Fibromyalgia References: Triggers, Symptoms, Treatments - & Hunting & Tracking them

INTRODUCTION - version 2021-04 - newest version below

Deepening on the Symptoms lists: 100, 200, full… ("64"):

Reformulating our experiences is helpful, but I also need to bundle all I find out, for quicker reference. Linking all items/descriptions isn’t possible, but I’ll refer between them and hyperlink to any in-depth-posts. I’ll edit the 3 posts for the month it is possible, then add new versions.

CAUSES/TRIGGERS, version 2021-04: newest version below

Trigger list (work in progress)

A. Triggers in the sense of general beginning of the disease (pathogenesis; etiology)

CSS, central sensitization syndrome, central sensitivity syndrome

The Science of Fibromyalgia (CSS)

Autoimmune / cytokines / chemokines / mast cells...

cf. EpicGenetics new blood test for Fibromyalgia - #18 by JayCS

Study on Fibromyalgia and cytokines" 2014

Current evidence suggests that cytokines and especially chemokines may have a role in the pathogenesis of this syndrome. Cytokines are small soluble factors that work as immune system messengers. They can be classified as pro-inflammatory and anti-inflammatory cytokines. Chemokines are a special kind of pro-inflammatory cytokines that guide the movement of circulating mononuclear cells to the injured side. Some pro-inflammatory cytokine levels (i.e. IL-1RA, IL-6, and IL-8) and, recently, some chemokines’ levels have been found to be increased in patients with fibromyalgia. Thus, herein we review the current knowledge regarding the role of cytokines in fibromyalgia patients and their possible clinical relevance.
“Low-grade chronic inflammation mediated by mast cells in fibromyalgia: role of IL-37”: Mast cells are involved in FM by releasing proinflammatory cytokines, chemokines, chemical mediators, and PGD2. Ah, I’d heard of mast cells before.
Interesting to me cos of my whole-body cryotherapy is this one: Serial whole-body cryotherapy in fibromyalgia is effective and alters cytokine profiles" - very new: Adv Rheumatol. 2021 Jan 13;61(1):3.

Also wondering if GABA and its derivatives are related to this, cf. the updated GABA-thread GABA & derivatives, gabapentin (Neurontin), pregabalin (Lyrica), phenibut, baclofen, picamilon

genetic predisposition

Occurs more in some families, also in twins.

Neuroendocrine

Psychological stress and fibromyalgia: a review of the evidence suggesting a neuroendocrine link

Chronic pain

Cfs - #6 by SK1

(Not accepted in any way, I don't think: Extinction memory damage, EMD

New hypothesis on the origin of FMS and related diseasesThe EMD hypothesis)

- ...

B. Triggers in the sense of possible general starting points of fibromyalgia

Virus Infections:

such as flu, swine flu, Epstein-Barr-Virus (EBV)

Psychological:

Trauma, stress, panic disorder,
bipolar disorder (The Co-Morbidity between Bipolar and Panic Disorder in Fibromyalgia Syndrome - PubMed)

Functional - intolerances, deficiencies

10 Causes of Fibromyalgia Your Doctor May Not Know About

C. Triggers in the sense of more long-term flares

  • Cold weather

D. Triggers in the sense of day to day flares

  • Overdoing it
  • Stress

Version

Starting 2021-04-16, April 16th. - Delete after starting a new post.

SYMPTOM List, version 2021-04: newest version below

Symptom list (work in progress)

Starting point: 200+ Symptoms of Fibromyalgia (Hard to Believe). What are Yours? - Fibromyalgia Resources from the thread Symptoms lists: 100, 200, full... ("64")

200+ List being changed to alphabetical, ordered by body parts, leaving out repetitions, things I've not heard of much or which are much too specific (e.g. everything "cognitive"!) and ordering things more sensibly (most important word first...)

GENERAL *
Activity level significantly decreased
Raynaud: Cold hands and feet (extremities)
Fibro-Fog: Delayed reaction to physical activity or stressful events
Dryness of eyes and/or mouth
Edema
Trigger: Family member(s) with Fibromyalgia
Fatigue from physical exertion or stress
Feeling cold
Feeling hot
Frequent sighing

Hoarseness
Thirst increased
Raynaud: Poor circulation in hands/feet
Flu-feeling
Shortness of breath with little or no exertion (esp. arms)
Sore throat
Swollen-feeling
Sweats
Triggers: Stress, temperature changes
Lymph nodes swollen, especially in neck and underarms
Trembling, tremor
Weight gain or loss, unexplained

Doubting it
Overdoing it

PAIN - Parts of the body, toe to top
Legs:
Feet - Plantar arch or heel pain
Thighs
Restless Leg Syndrome, RLS
RLS
Hip

Torso:
Abdomen/belly
Chest
Ribs - Inflamed Rib Cartilage, Costochondritis
Costochondritis, Ribs
Breasts, lumpy & tender
Clavicula/collarbone
Collarbone/clavicula

Arms: Elbow

Head:
Jaw: TMJ syndrome
TMJ syndrome: jaw
Teeth
Head - Headache
Scalp Pain (like hair being pulled out)

All over:
Joint pain
Nerves burning
Morning stiffness
Stiffness, morning
Stiffness, all day after not moving for a while
Muscle pain
Muscle spasms
Muscle twitching
Muscle weakness
?Pain that ranges from moderate to severe
Pain that moves around the body
Paralysis or severe weakness of an arm or leg
Sciatica-like pain
Tender points (not the same as trigger points)
Trigger points (not the same as tender points)
Voodoo Doll-Poking Sensation in random places

NEUROLOGICAL

Brain fog:

https://princessinthetower.org/10-ways-to-ease-brain-fog, Brain Fatigue = Brain Fatigue 101

Carpal Tunnel
Feeling spaced out
Smells hallucinations
Thinking unclearl
Light-headedness
Noise intolerance
Numbness or tingling sensations
Photophobia (sensitivity to light)
Light sensitivity
Seizures and Seizure-like episodes
Tinnitus (ringing in one or both ears)
Vertigo or dizziness
EQUILIBRIUM/PERCEPTION
Bumping into things
Walking clumsily
Balancing difficult
Distance-judging difficult (when driving, etc.)
Directional disorientation
Dropping things frequently
Disoriented spatially feeling
Tripping or stumbling frequently
Stumbling, tripping frequently
Not seeing what you’re looking at
Balance and coordination poor
Staggering gait

Fatigue at daytime

SLEEP
Alertness/energy best late at night
Sleep/wake schedule altered
Awakening frequently
Falling asleep difficult
Staying asleep difficult
Excessive sleeping, Hypersomnia
Hypersomnia, Excessive sleeping
Narcolepsy
Falling asleep at random and sometimes dangerous moments
Sleep pattern light or broken
Muscle spasms/twitches at night
Sleep disturbances * 104. Sleep starts or falling sensations * 105. Teeth grinding * 106. Tossing and turning * 107. Un-refreshing or non-restorative sleep * 108. Vivid or disturbing dreams/nightmares EYES/VISION * 109. Blind spots in vision * 110. Eye pain * 111. Difficulty switching focus from one thing to another * 112. Frequent changes in ability to see well * 113. Night driving difficulty * 114. Occasional Blurry vision * 115. Poor night vision * 116. Rapidly worsening vision * 117. Vision changes COGNITIVE * 118. Becoming lost in familiar locations when driving * 119. Confusion * 120. Difficulty expressing ideas in words * 121. Difficulty following conversation (especially if background noise present) * 122. Difficulty following directions while driving * 123. Difficulty following oral instructions * 124. Difficulty following written instructions * 125. Difficulty making decisions * 126. Difficulty moving your mouth to speak * 127. Difficulty paying attention * 128. Difficulty putting ideas together to form a complete picture * 129. Difficulty putting tasks or things in proper sequence * 130. Difficulty recognizing faces * 131. Difficulty speaking known words * 132. Difficulty remembering names of objects * 133. Difficulty remembering names of people * 134. Difficulty understanding what you read * 135. Difficulty with long-term memory * 136. Difficulty with simple calculations * 137. Difficulty with short-term memory * 138. Easily distracted during a task * 139. Dyslexia-type symptoms occasionally * 140. Feeling too disoriented to drive * 141. Forgetting how to do routine things * 142. Impaired ability to concentrate * 143. Inability to recognize familiar surroundings * 144. Losing track in the middle of a task (remembering what to do next) * 145. Losing your train of thought in the middle of a sentence * 146. Loss of ability to distinguish some colors * 147. Poor judgment * 148. Short term memory impairment * 149. Slowed speech * 150. Staring into space trying to think * 151. Stuttering; stammering * 152. Switching left and right * 153. Transposition (reversal) of numbers, words and/or letters when you speak * 154. Transposition (reversal) of numbers, words and/or letters when you write * 155. Trouble concentrating * 156. Using the wrong word * 157. Word-finding difficulty Fibromyalgia Disability Car bumper sticker: Lets put this sticker on your car and spread the fibromyalgia awareness. As many people out there don’t consider our illness as being disable, because they don’t know it. *– Click Here to get Yours Fibromyalgia Disability Sticker for you Car * Click Here to visit the store for More Products EMOTIONAL * 158. Abrupt and/or unpredictable mood swings * 159. Anger outbursts * 160. Anxiety or fear when there is no obvious cause * 161. Attacks of uncontrollable rage * 162. Decreased appetite * 163. Depressed mood * 164. Feeling helpless and/or hopeless * 165. Fear of someone knocking on the door * 166. Fear of telephone ringing * 167. Feeling worthless * 168. Frequent crying * 169. Heightened awareness – of symptoms * 170. Inability to enjoy previously enjoyed activities * 171. Irrational fears * 172. Irritability * 173. Overreaction * 174. Panic attacks * 175. Personality changes –usually a worsening of pervious condition * 176. Phobias * 177. Suicide attempts * 178. Suicidal thoughts * 179. Tendency to cry easily GASTROINTESTINAL * 180. Abdominal cramps * 181. Bloating * 182. Decreased appetite * 183. Food cravings * 184. Frequent constipation * 185. Frequent diarrhea * 186. Gerd-like Symptoms * 187. Heartburn * 188. Increased appetite * 189. Intestinal gas * 190. Irritable bladder * 191. Irritable bowel syndrome * 192. Nausea * 193. Regurgitation * 194. Stomachache * 195. Vomiting * 196. Weight gain * 197. Weight loss UROGENITAL * 198. Decreased libido (sex drive) * 199. Endometriosis * 200. Frequent urination * 201. Impotence * 202. Menstrual problems * 203. Painful urination or bladder pain * 204. Pelvic pain * 205. Prostate pain * 206. Worsening of (or severe) premenstrual syndrome (PMS) * * SENSITIVITIES * 207. Alcohol intolerance * 208. Allodynia (hypersensitive to touch) * 209. Alteration of taste, smell, and/or hearing * 210. Sensitivity to chemicals in cleaning products, perfumes, etc. * 211. Sensitivities to foods * 212. Sensitivity to light * 213. Sensitivity to mold * 214. Sensitivity to noise * 215. Sensitivity to odors * 216. Sensitivity to yeast (getting yeast infections frequently on skin, etc.) * 217. Sensory overload * 218. Sensitivity to pressure & humidity changes * 219. Sensitivity to extreme temperature changes * 220. Vulvodynia SKIN * 221. Able to “write” on skin with finger * 222. Bruising easily * 223. Bumps and lumps * 224. Eczema or psoriasis * 225. Hot/dry skin * 226. Ingrown hairs * 227. Itchy/Irritable skin * 228. Mottled skin * 229. Rashes or sores * 230. Scarring easily * 231. Sensitivity to the sun * 232. Skin suddenly turns bright red Cardiovascular (Heart) 234. Fluttery heartbeat * 235. Heart palpitations * 236. Irregular heartbeat * 237. Loud pulse in ear * 238. Pain that mimics heart attack * 239. Rapid heartbeat HAIR/NAILS * 240. Dull, listless hair * 241. Heavy and splitting cuticles * 242. Irritated nail beds * 243. Nails that curve under * 244. Pronounced nail ridges * 245. Temporary hair loss OTHER * 246. Canker sores * 247. Dental problems * 248. Disk Degeneration * 249. Hemorrhoids * 250. Nose bleeds * 251. Periodontal (gum) disease
Touching pain = allodynia
Amplified pain = hyperalgesia
Neck pain: Epsom salt-baths (magnesium sulfate)
Back pain: Epsom salt-baths (magnesium sulfate)
Back pain (lower back, SI-joint, sacro-ilial joint, coccyx, from sitting): Standing work station; lying down with laptop when possible; Yoga exercises for the lower back; back exercises; osteopathy; acupressure; kneeling chair & gym ball if coccyx is OK, chiropractor, special cushions.
Overstraining something: Twist-stretch: stop whatever & twist limbs, back or neck gently & hold it for 10 to 20 seconds.

The following symptom, dry eyes, is an example of just one "side-"symptom with about 15 characteristics, 20 causes/triggers and 20 treatments (just from 2 sites…). Most causes and treatments are very specific. Wind however also triggers core symptoms for me. Whilst such connections may be interesting & helpful they wdn’t generally justify a databank-overload. Maybe it’d make sense to sort symptoms.

Dry eyes: itchiness, hurting, stinging, burning, scratchy, stringy mucus, light sensitivity, eye redness, foreign-body sensation, contact lense difficulty, nighttime driving difficulty, watery eyes (as response), blurred vision, eye fatigue…
**

Dry eyes: 15 treatments:

What Is Dry Eye Syndrome? – Optometrists.org
Warming by cupping warm hands, then Gua Sha, gently.
Dry eyes - Diagnosis and treatment - Mayo Clinic Various therapies, 4 drop types, other things like intense-pulsed light therapy followed by massage of the eyelids, adding omega-3 fatty acids (flaxseed oil, castor oil eyedrops and acupuncture:

Dry eyes: 10s of triggers

Heating, wind,
Dry eyes - Symptoms and causes - Mayo Clinic

Example of a symptom-group, ALSO an image to explain to others, like “run over by a truck/car/train/rhino” or “lead suit”…
Flu-like feeling: heaviness, Ache, fatigue, more pains, rest need, sleep need, sleep long. With or without fever-feeling, sinuses/runny nose (allergy?), headaches (migraines).


Version

Starting 2021-04-16, April 16th. - Delete after starting a new post.

TREATMENT list, version 2021-04: newest version below

Treatment list

Ordered systematically here first, alphabetically later.
Docs/therapists: If you’re dissatisfied & can afford to do so: change, get 2nd/3rd opinions.

A. MIND (pacing, (forum-)support (memes), psychotherapy, esp. CBT, relaxation, sleep)

Psychologist, psychiatrist, psychotherapist, counsellor, pastor, helpdesk, outreach clinic…

A.1. Pacing: Fatigue,

= finding the invisibly moving sweet spots of each activity.
Not trying to keep up with before or others, but keeping under limits, learning what overdoing is.
(Incl. Socializing reduced, esp. evenings: Fatigue)
(incl. Changing work stress and work amount, perhaps work type or work altogether)
Various diaries keeping track of what you’ve done and how you’re feeling before, during & after, adapting with abbreviations to your need, cf. JayCS’s Fibro Blog (see summary-thread ∑)

A.2. Memes & other support, e.g. forums, support groups = mental hygiene

Pics & Memes that visualize fibromyalgia and other chronic pain illnesses - #91 by AussieMom (German: “Psychohygiene”)

A.3. psychotherapy

e.g. CBT, psychoanalysis, Gestalt therapy

A.3.1. CBT (& b. CPT)

CBT (and A3.1b CPT): Trauma therapy (CPT) for PTSD, Anxiety therapy, depression, with or better without using meds, cf. E1. Biochemical: meds.

A3.2 counseling

x

A.4. Relaxation techniques

Autogenous/autogenic training
self-hypnosis
progressive muscle relaxation (Jacobsen),
Alexander technique…
Calming music
Calming nature sounds
meditation
Reading: stress.
Sun! :sun_with_face:

A.5. Sleep hygiene

Napping is usually not recommended, but try it or power naps and compare.
Get ruminating down: Cut off thoughts with “Stop!” Scissors, Chainsaw, Cold showering
Nightmares: Reality check, reverse imaging techniques…
Sleep diary
Bedtime procrastination - Wikipedia
What is Sleep Hygiene? - Sleep Foundation
German Was ist Revenge Bedtime Procrastination? | Schlaf.de
German Revenge bedtime procrastination: Warum wir Schlaf gegen Handy-Zeit eintauschen - WELT


B. PHYSICAL/BODY (Hands, Heat/Cold, Devices, Electricity, Do vs. Get Done...)

TCM doctors: acupuncturist, Chinese herbs/teas,
physiotherapists: massage therapist, acupressurist, acupuncturist, osteopath, teachers of the various types of yoga, tai chi, qi gong.
Good physiotherapists are more important than good docs, unless you want mainly meds.

By therapist:…
By yourself:…

Asian or Asian-influenced:...

Acupressure
Ear-acupressure (Penzel)
Acupressure points
palpation points
trigger points
Acupuncture
Ear-acupuncture
Dry needling (trigger point dry needling) Dry needling - Wikipedia
Qi Gong
Tai Chi
TCM
Wim Hof Method, WHM
Yoga types
Breathing exercises
Breathing/breath-holding exercise (Wim Hof)

Breathing exercises
Breathing/breath-holding exercise (Wim Hof)
Nose strips for better breathing, more oxygen
Cold/Heat
Cryotherapy
Whole Body Cryotherapy: Cold Chamber/Barrel (-120°C, now -150°C (-240°F) for 3 mins.
Cold showers (inspired by Wim Hof)
Hand heat baths: canola seed: 15’ (5’)
Hand heat baths: Spelt
Hand cold baths: canola seed: 15’ (5’)
Hand cold baths: Spelt
Sun! :sun_with_face:
Connective tissue massage
Cupping
Electrotherapy
TENS unit or gentler: microcurrent unit (relaxes breathing)
microcurrent unit gentler than a TENS unit
Hydrotherapy: moving in water, using hot or cold water etc.
Water therapy, hydrotherapy
Massages various
Manual therapy
Manipulation
Mechanical devices such as traction.
Mechanical devices:
Kinesio tape/taping Kinesio Tape, anyone?
Acu ball for TMJ
Gum shield, mouth guard, tooth guard: for grinding teeth, bruxism.
Traction.
Myofascial massage
Osteopathy
Physical therapy exercises
Body parts
Hand exercises
Neck exercises
Back exercises
Back exercises (“yoga“)
Qi Gong
Stretching - gentle, dynamik, short, like this: https://youtu.be/fONfo3OpoGI (Bob & Brad)
Tai Chi
TENS unit or gentler: microcurrent unit (relaxes breathing)
microcurrent unit gentler than a TENS unit
Wim Hof Method, WHM
Yoga types
Back exercises
Yin yoga
Changing positions regularly
Standing working station (bar stool, bar table)
Lying down

Sports:

Aqua jogging / Hydrotherapy
Swimming: stress.
Walks: stress
Workout: Muscles, tendons, fascies, joints, breathing, overall.

Stretching, gently!: back pain.
Stretching, gently!: back pain.
Twist-Stretching

Hygiene
Dental hygiene
/Tooth hygiene
Teeth brushing
Teeth flossing
Showering
Washing

(Bioresonance therapy - whatever you think of it…)


C. BIOLOGICAL (Diets, essential oils...)

functional medicine doc, nutritionist, alternative practitioner, allergologist, nutritionist…

Baths cf. Biochemical: supps (magnesium/Epsom salts) and Physical: cold/heat
Cold/Heat cf. Physical: cold/heat
Essential Oils:
Lavender
Swiss pine
Diets:
For Bladder:
For Gut / IBSD/C:
For Stomach:
Overview of diets under “I do still have questions about the ketogenic diet” Ketogenic diet: reductions in auditory hallucinations and delusions, better mood and energy, and weight loss - everywomanover29
Whole foods diet
Organic diet
gluten free diet
grain free diet
low carb diet: Your “Healthy” Diet Could Be Quietly Killing Your Brain | Psychology Today (Interesting Carbohydrate News in Psychology Today, Not Just Gluten!)
Keto diet / ketogenic diet (high fat, low carb, low protein)
Ketogenic diet: reductions in auditory hallucinations and delusions, better mood and energy, and weight loss - everywomanover29
FODMAP diet, low FODMAP
vegan/vegetarian/non-dairy
low oxalate,
low salicylate
low histamine
no nightshade
paleo diet
AIP diet: Autoimmune protocol: Variant of the paleo diet: minus nightshades, nuts, seeds, sweeteners and eggs. 14 Signs of Nightshade Sensitivity (and What to Do About It)

Mediterranean diet

Important Food types
Unsaturated fats rather than saturated fats
Complex carbs rather than simple carbs
Omega 3: flaxseed oil

ozone-autohemotherapy (ozone-injections)
oxygen-autohemotherapy (oxygen-injections)


D. ENVIRONMENTAL (Bed, air, cold, heating, light, noises, wind, sun...)

forums, web pages, empathetic doc, counsellor, friends, family, partner

Air rooms
Bed new: pillow: neck pain.
Bed new: mattress: back pain.
Bed new: pillow: neck pain.
Bed new: mattress: back pain.
Pillow under hunchback
Pillow-wedge under face
Place more pillows for comfort
Weighted blankets
Heating - moisten air, but not too much.
cf. Better sleep - 30 wakers & stoppers
Change clothes, blankets
Sun! :sun_with_face: - but carefully…
Wind protection: Hoodies,
Cold protection: Longjohns, rain legs for bike, more socks, more clothes, layered onion-like.
Rain protection: Rain legs for bike


E. BIOCHEMICAL (Meds, supps, herbs)
E1. MEDS

Doctors (change them if necessary, get 2nd and 3rd opinions if you’re dissatisfied and can afford to do so), GP / PCP / principal; pain doctor, rheumatologist (orthopedists), neurologist…

GABA (cf. supps ) & Co.: gabapentin, pregabalin, phenibut, baclofen, picamilon, mirogabalin

GABA & derivatives, gabapentin (Neurontin), pregabalin (Lyrica), phenibut, baclofen, picamilon - #6 by JayCS

Low-Dose Naltrexone, LDN

General: Low-dose naltrexone - Wikipedia
Experiences: Low Dose Naltrexone/LDN for Fibromyalgia: Four Year Update - Melissa vs Fibromyalgia
Side effects: Naltrexone (Oral Route) Side Effects - Mayo Clinic Vivid dreams, IBS
Side effects What are the Side Effects of LDN - Town & Country Compounding
Studies:
Reduced Pro-Inflammatory Cytokines after Eight Weeks of Low-Dose Naltrexone for Fibromyalgia - PubMed 2017
Fibromyalgia symptoms are reduced by low-dose naltrexone: a pilot study - PubMed 2009 10 women. may be effective, highly tolerable, and inexpensive.
Use of low-dose naltrexone in the management of chronic pain conditions: A systematic review - PubMed 2020 pain. anti-inflammatory and immunomodulator. most studies, incl. for orofacial pain.
The Use and Utility of Low-dose Naltrexone Capsules for Patients with Fibromyalgia - PubMed 2018 4.5mg 25 women
Low-Dose Naltrexone for the Treatment of Fibromyalgia: Investigation of Dose-Response Relationships - PubMed 2020 CFS: 3 cases
Low dose Naltrexone for induction of remission in inflammatory bowel disease patients - PubMed IBD 2018: reducing mucosal ER stress
Low-dose naltrexone as a treatment for chronic fatigue syndrome - PubMed CFS 2020
Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels - PubMed 2013 31 women pain/mood better, not fatigue/sleep.
The Use of Low-Dose Naltrexone for Chronic Pain - PubMed 2019 pain: could be a viable treatment option cos minimal adverse effects and cheap.
Pharmacology Update: Low-Dose Naltrexone as a Possible Nonopioid Modality for Some Chronic, Nonmalignant Pain Syndromes - PubMed 2019 pain: increased levels of endogenous opioid production, known as opioid rebound effect
Low-dose naltrexone (LDN): A promising treatment in immune-related diseases and cancer therapy - PubMed 2018 immune review: may become a promising immunomodulatory agent
The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain - PubMed 2014 anti-inflammatory/pain: glial cell modulator.
Low Dose Naltrexone in the Treatment of Fibromyalgia - PubMed 2018: small: safe, likely
Low-Dose Naltrexone for Chronic Pain: Update and Systemic Review - PubMed 2018 pain: promising
The Safety and Efficacy of Low-Dose Naltrexone in the Management of Chronic Pain and Inflammation in Multiple Sclerosis, Fibromyalgia, Crohn's Disease, and Other Chronic Pain Disorders - PubMed 2018 pain incl. FMS: safe, but unproven
Low-Dose Naltrexone (LDN)-Review of Therapeutic Utilization - PubMed 2018 = Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization overview: FMS too small.

Celecoxib (Cox-2-inhibitor),
Etoricoxib (Cox-2-inhibitor),
Tilidine (opioid)
Cox-2-inhibitors: Celecoxib, Etoricoxib
Opioids: Tilidine,
Metamizole (“Novalgin”)
Diclofenac
amitriptyline (‘Endep’): sleep, pain.
Meds: sleep.
Meds: pain.
Venlafaxine ‘Effexor’ SNRI: depression, anxiety, pain.
Milnacipran (trade names Ixel , Savella , Dalcipran , Toledomin), SNRI: fibromyalgia, depression.
Fluoxetine (Prozac) (SSRI): depression, OCD…
Neural therapy - injections with procaine (Local anaesthetic) (Huneke) (complementary medicine)
Hyaluronic acid injections in the lumbar spine - ‘sunburn’ in face, excrutiaing pain in spine
Zomoph
Metoxican
Paracetamol
Sumatriptan for migraines bc of tension in neck/jaw.
Guaifenesin protocol: Guaifenesin protocol - Wikipedia vs. The Guaifenesin Protocol - Fibromyalgia Treatment Center

E2. SUPPS

functional medicine doc, alternative medicine doc, ‘environmental doc’…, some half-conventional docs etc., alternative health practicioner, nutritionist

GABA & Co.: gabapentin, pregabalin, phenibut, baclofen, picamilon, mirogabalin

GABA & derivatives, gabapentin (Neurontin), pregabalin (Lyrica), phenibut, baclofen, picamilon - #6 by JayCS
For sleep. - My GABA side effects initially: tingling, belly ache, all the time: dry mouth, vivid dreams, nose clot, nose bleed, improved after a few days. Positive: Energy, better sleep, less sensitive bladder.
GABA Neurotransmitters as food supplements: the effects of GABA on brain and behavior - PubMed Unclear if and how it works.
GABA in food: A List of Foods with the Highest GABA | Livestrong.com
Gabapentin: epilepsy, neuralgia - Needs 1-2 weeks to develop it’s effect. Side-effects: Increases tiredness.
A List of Foods with the Highest GABA | Livestrong.com

Serrapeptase

A proteoloytic enzyme which users say is anti-inflammatory and has hardly any/no side effects.
Fibro occasionally listed. Altho we of course don’t know if it really has something inflammatory or autoimmune.
Evidence-based medicine seems to believe there are not enough trials to warrant interest.
But a look on pubmed shows a negative review of this kind from 2013, however 3 more positive ones from 2017 2x and 2020.
The role of serratiopeptidase in the resolution of inflammation - PubMed The role of serratiopeptidase in the resolution of inflammation, Asian J Pharm Sci. 2017 May
Serratiopeptidase: Insights into the therapeutic applications - PubMed Serratiopeptidase: a systematic review of the existing evidence. Int J Surg. 2013;11(3):209-17
Analytical techniques for serratiopeptidase: A review - PubMed Analytical techniques for serratiopeptidase: A review J Pharm Anal. 2017 Aug;7(4):203-207
So I am inclined to try it one day, after GABA is helping so well at the moment.
And the feverish-feeling I still get makes me feel there is some hidden inflammation or something autoimmune going on in my body unbeknownst to man. ;o)
3 trusted online pharmacies offer it here, not that cheap tho: 40c per 500mg pill.
Oh, wait a minute: https://draxe.com/nutrition/serrapeptase/
serrapeptase: digestive upset, skin inflammation, infections or rash, can lead to muscle aches and joint pain, risk for pneumonia, infections, bleeding and bruising.

•	Digestive upset, including nausea
•	Skin inflammation and spreading of infections or rash (13)
•	Muscle aches and joint pain
•	Increased risk for pneumonia
•	Potentially increased risk for infections, such as bladder infection
•	Potentially increased risk for bleeding and bruising, especially when combined with drugs such as warfarin, clopidogrel and aspirin

10mg-60, most often 15-30, 5mg for mild symptoms.
Empty stomach, first thing, between meals, 2h from meal.
https://serrapeptase.info/

Good German link on serrapeptase

https://www.foodgroove.de/serrapeptase/ gut - schmerz, schleim, herz, spermien, Entzündungen - Arthritis, Dermatitis, Gastritis, Colitis, Gelenke, Schwellungen, verhindert Aussonderung bestimmter schmerzerzeugender Substanzen z.B. Bradykinin. Hilft bes. lokalisiert z.B. Ohren, Rachen, Nase. Schleim. Blutgerinnsel. Narben. Nattokinase ähnlich, besser gg Alzheimer.
Nicht mit ASS kombinieren.
Nüchtern, 30’-2h vor Mahlzeit, 3x Tal., in Studien meist 10g (-60). Evtll effektiver mit Zn oder Mangan.
Nix in Drogerien, Apo. aber netz.
Studien.

Glutamic acid: Is turned into glutamine, so less effective than that.

Glutamine (glutamic acid)

Glutamic acid: Is turned into glutamine, so less effective than that.
German link: Glutamin und Glutamat

Minerals:

Minerals:
Calcium
Magnesium types:
Epsom salt-baths (magnesium sulfate): neck pain.
Epsom salt-baths (magnesium sulfate): back pain.
magnesium sulfate (Epsom salt-baths): neck pain.
magnesium sulfate (Epsom salt-baths): back pain.
magnesium (taurate) for TMJ
Mg activates Vit. D & thiamine and activated thiamine is needed to activate vitamin B6 which together with magnesium, thiamine and B12 are involved with nerve health, pain and many other tasks.
potassium
selene
zinc
proteolytic enzymes for Myofascial and Fibro

Hormones:
(L-)tryptophan
Tryptophan ((L-)tryptophan)
5 HTP
Melatonin: sleep

Melatonin, L-Tryptophan, 5-HTP

Has Anyone Seen the Research on Melatonin? - #16 by JayCS
Shd praps analyze again whether 5-HTP helped in the winter break, as not working in the Easter break did not help:
https://www.livingwithfibro.org/t/jaycs-s-fibro-blog/13307/174

progesterone

Vitamins:
Vitamin B12 - basic, often one of the most nec.
Vitamin B1
Vitamin B2
Vitamin C
Vitamin D3: often very necessary
Vitamin E: types
Q10

Omega 3: flaxseed oil, cf. diets.
Regime: Vitamins & mineral regime in 5 phases (Dr. Bodo Kuklinski, Rostock): vitamin b12 injections / potassium, zinc, selene / vitamins B1 + B2, C, E / flaxseed oil / Q10)

E3. HERBS

functional medicine docs, alternative medicine docs, ‘environmental docs’…, some half-conventional docs etc., alternative practitioner

Ashwagandha

Sleep, blood fats, thyroid, joints and more.
https://www.healthline.com/nutrition/12-proven-ashwagandha-benefits#_noHeaderPrefixedContent
Ashwagandha is a nightshade! Who’d’ve thought! Gets on my nerves when such basics are omitted, even on pages like healthline.
Wdn’t keep me off trying it, as I have no detectable problems with at least mild peppers (yellow), but if I feel the need, despite GABA, and the endocrinologist says OK, I’d know where any side effects of it are coming from…

Tried ashwagandha May 11th & 12th - severe burning stomach at night:

Wind, stomach burn (ache): https://www.onlymyhealth.com/side-effects-ashwagandha-1317705629
Take it with meals then. https://blog.paleohacks.com/nightshades: stomach hyperacid problems are normal. https://www.youtube.com/watch?v=U2UFcLqkQCM comments: Itching possible (bilirubin/liver), better with hot milk/water & ghee (wdnt be good for me). https://www.youtube.com/watch?v=AuUgsAJXnDo: Take for at least 3 months, it needs to build up. Capsules OK, better for ‘bad taste’, the name means horse-smell (Indian doc).
https://www.nourishdoc.com/TreatmentPlans/Ashwagandha-Benefits-Side-Effects-diabetes-type-ii-heart-disease: Increased stomach acid… :roll_eyes:
(Unlikely that this was caused by drinking a few sips of fizz, cos I drank 5x as much yesterday.)

German link: https://www.zentrum-der-gesundheit.de/ernaehrung/nahrungsergaenzung/heilpflanzen/ashwagandha Aim for 2x2-4g/d, only evenings if it makes you tired; earlier and apart from meals if it doesn’t work enough. Can take days, weeks or months to work.

Celafen cream (with Celadrin)

https://selfhacked.com/blog/celadrin/
https://en.wikipedia.org/wiki/Celadrin_(joint_cream)

Arnica
Arnica oil: pain in muscles and tendons (‘joints’)
Arnica complex cream (‘Traumeel’): pains in muscles & tendons (‘joints’)
CBD oil: sleep.
CBD oil: pain
Golden root
Passiflora = passion flower: for sleep
Rhus toxicodendron for (rheumatic) pain
Valeriana for sleep
Turmeric, raw peeled: fatigue. (Stomach pain)(German = Curcuma, gelber Ingwer)
Willow bark: pain (aspirin)


Z. My Treatments (JayCS)
Z.1 Helps me, in order of importance:

Acupressure
Whole Body Cryotherapy: Cold Chamber/Barrel (-120°C, now -150°C (-240°F) for 3 mins.
Cold showers (inspired by Wim Hof)
Osteopathy
Breathing/breath-holding exercise (Wim Hof)
Wim Hof Method, WHM
Back exercises (“yoga“)
Connective tissue massage
Autogenous training
Hand exercises
Aqua jogging

Z.2 Harmed me:

Celecoxib (Cox-2-inhibitor),
Etoricoxib (Cox-2-inhibitor),
Tilidine (opioid)
Cox-2-inhibitors: Celecoxib, Etoricoxib
Opioids: Tilidine,
Metamizole (“Novalgin”)
Acupuncture
Neural therapy,
Hyaluronic acid injections in the lumbar spine - ‘sunburn’ in face, excrutiaing pain in spine
Nose strips - allergy if left on nose on too many hours
Stretching - pain, nausea and cramps if longer than 30’’
Cupping
Electrotherapy,
Yin yoga
Physical therapy exercises,
Manual therapy,
Physical therapy: Manual therapy,
Physical therapy: Manipulation,
Manipulation.
Physical therapy: Mechanical devices such as traction,
Mechanical devices:
Traction.
Hand heat baths: canola seed: 15’ (5’)
Hand heat baths: Spelt
Hand cold baths: canola seed: 15’ (5’)
Hand cold baths: Spelt
Qi Gong
Melatonin 2mg extended release and 1mg (halved)
CBD oil 10% 1 drop
ashwagandha: stomach & gut

Z.3 Didn't help me:

Diclofenac
Willow bark
Glutamine
Arnica
Rhus toxicodendron,
golden root
Magnesium
Calcium
Valeriana,
Passiflora
(L-)tryptophan,
5 HTP,
progesterone,
lavender
Swiss pine,
bioresonance therapy,
gluten free diet,
low carb diet
psychotherapy
Vitamins & minerals: vitamin b12 injections, potassium, zinc, selene, vitamins B1 + B2, C, E, flaxseed oil, Q10)
amitriptyline: Helped getting back to sleep for a few months, but too harmful (8 side effects).
ozone-autohemotherapy (ozone-injections)
oxygen-autohemotherapy (oxygen-injections)
Heavier blanket (haven’t tried a real weighted one yet, but seems to irritate)


Version

Starting 2021-04-16, April 16th. - Delete after starting a new post.

STUDIES list, version 2021-04: newest version below

100 studies on fibro per month… :upside_down_face:

I just thought I’d look if there’s a new study or two on pubmed: <fibromyalgia 2021> brings up 394 results. Dud, I thought. Scanned thru them all. Not dud! A few are from 2020. That’s 100 studies per month! Most of them center on fibro, all of them relevant in one way or another (pain, duloxetine etc.).

Examples

Symptoms
Women Fibromyalgia in women: somatisation or stress-evoked, sex-dimorphic neuropathic pain? - PubMed
Stigmatization Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences - PubMed
PsA Fibromyalgia in patients with psoriatic arthritis: Relationship with enthesopathy, sleep, fatigue and quality of life - PubMed
Laziness-prejudice "Everyone thinks I am just lazy": Legitimacy narratives of Americans suffering from fibromyalgia - PubMed
Age differences: young - more anxiety; middle - more pain & co-morbidities, old - “better self-report cognitive function” Comorbid Conditions, Mental Health and Cognitive Functions in Adults with Fibromyalgia - PubMed
PsA-co-morbidity worsens Fibromyalgia in patients with psoriatic arthritis: Impact on disease activity indices, fatigue and health-related quality of life - PubMed
Personality is irrelevant Personality and psychopathology heterogeneity in MMPI-2 and health-related features in fibromyalgia patients - PubMed

Causes
SFN Advances in the Management of Small Fiber Neuropathy - PubMed
Salivary Biomarkers Application of Salivary Biomarkers in the Diagnosis of Fibromyalgia - PubMed

Treatments
Pregabalin Pregabalin - PubMed
Exercise Effectiveness of Exercise on Fatigue and Sleep Quality in Fibromyalgia: A Systematic Review and Meta-analysis of Randomized Trials - PubMed
Q10 Coenzyme Q10 - PubMed
Exercises Prescription of exercises for the treatment of chronic pain along the continuum of nociplastic pain: A systematic review with meta-analysis - PubMed
Neural Therapy Neural therapy for fibromyalgia: Myth or improving quality of life? - PubMed
Pain education [Effectiveness of pain neuroscience education in patients with fibromyalgia: Structured group intervention in Primary Care] - PubMed
Therapies don’t help much Association of Therapies With Reduced Pain and Improved Quality of Life in Patients With Fibromyalgia: A Systematic Review and Meta-analysis - PubMed
Medical Cannabis can help, types unclear Safety and Efficacy of Medicinal Cannabis in the Treatment of Fibromyalgia: A Systematic Review - PubMed
Mindfulness & CBT help help Differential efficacy between cognitive-behavioral therapy and mindfulness-based therapies for chronic pain: Systematic review - PubMed
Walking helps Promoting unsupervised walking in women with fibromyalgia: a randomized controlled trial - PubMed

@JayCS Thanks for the mention and credit.

@JayCS Your research is awesome! What caught my eye is “altered glutamate metabolism”. I have terrible reactions to glutamate, both natural and MSG. I can’t eat beef because of it, or most processed foods. I have researched for years and haven’t been able to find the cause or the connection to my many conditions. Thanks for the link!

I have heard recently from many Fibro patients who later were diagnosed with a different illness with overlapping symptoms.
One writer said “FIBROMYALGIA MIGHT BE A SYMPTOM OF AN UNDERLYING ISSUE.”
That would explain why there seem to be so many different causes of Fibro, and why many go on to be diagnosed with something more specific later on. What do you think of that possibility, that in many cases it’s not a disease in itself, but the symptom of a disease?

2 Likes

Thanks so much Sheila!
And very glad you’ve found something here that helps.
What I’m aiming for is that you cdve directly looked up glutamate and been lead to the link.
So I’d list “altered glutamate metabolism” as “glutamate metabolism altered”, plus I’m aiming for doing (3? and) one long alphabetical list, once that’s done. (Haven’t found the item myself yet tho :laughing:)
Glad to hear any further suggestions.

Writing about FMS being symptom of sth. underlying cd even have been me myself! :slight_smile: I haven’t read this much anywhere else, so it’d be great if you cd point me to the writer/quote (if nec per pm). One person who’d write it similar is Des Quinn of FMA UK.

If I take it at face value I cd retort that my experience is different: A centre for rare diseases suspected that Sjögren’s and Hashimoto’s were the real underlying conditions of my fibro. Both were examined closely: neither cd be confirmed. Also a spinal tap made sure no dangerous stuff like MS is involved. Then I have had every single smallest of symptoms checked by 45+ docs in 1.5 years (even urological, skin & allergies). The amount of my diagnoses went up a bit to 30+, but the only major ones were/are a non-growing spinal tumour and genetically high blood fats, both assessed as chance finding by all docs. So despite the fact that I had the feeling there was something else or underlying, no further issues could be found.

Then, I have managed to pinpoint, analyze, treat and alleviate many of my symptoms singly and thus get esp. my pains & GI problems down to almost zero. This wd make it seem that fibro is not one symptom of one underlying issue, but a collection of symptoms from many underlying issues. These could still be related, e.g. in my case problems with the muscle tone. And if I didn’t self-care and pace any more they’d all return, cos my general Ache wd worsen them. But it differentiates what the writer was talking about. Arguably I still have a remainder of esp. sleep, exhaustibility/energy and muscle tone problems which force me to reduce work to 15-20% and this might still be a symptom of one … or more underlying issues. On the other hand I’d always recommend to treat each single symptom alone and not focus on assuming it’s fibro just because other fibromites have this symptom. That’s also the snag about the symptom lists, as I say in that introduction.

My latest discovery, GABA, however, points in this direction of this way of thinking too. One supplement improves not only one of my toughest symptoms, 2 types of stiffness all day, but altogether improves 10+ symptoms since April 15th, where muscle tone seems to be a major connection between them. One of my underlying issues would then be low GABA. Finding the right dose isn’t easy at all, but I very much doubt this will get rid of everything. A lot of my symptoms have also been improved by acupressure, which is holistic and has had to target many single areas of my body.

Mainly, I’d think that there are underlying issues as in ‘cause-theories’, but they usually haven’t been found yet, neither by docs, incl. functional, nor physios, nor patients. When people say they have managed to heal fibro to date, I believe that the form of fibro-symptoms concerned are probably ‘easy’ and that it is a simple underlying issue. If it were that easy I and many others wd also be there already. Till then I’d recommend looking for underlying issues, since there’s nothing else we can do and since I’ve at least improved my quality of life that way.

I’d prefer to word it ‘some’, not ‘many’ to date. :slight_smile:

Thanks very much for this pointer :pray:, I’ll add it to Causes: A. Theories. Ah, I’ve just seen my latest addition sleep disorder, like chronic pain before, is actually similar, so I’ll subordinate those two to your suggestion, as I was a bit dissatisfied how to put them…

Cause/Trigger list

A. HYPOTHESES ("THEORIES") (pathogenesis; etiology)
A.1. CSS, central sensitization syndrome, central sensitivity syndrome (pain only)

The Science of Fibromyalgia (CSS)
Inflammation of the glia as cause or effect?

A.2. Autoimmune (e.g. - perhaps! - biomarkers cytokines (e.g. IL-6) / chemokines)

It’s completely open whether biomarkers such as these have to do with the causes or rather with effects / consequences…
Newest study: Goebel et al 2021: https://www.jci.org/articles/view/144201 FMS-IgG causes “sensitivity to pressure and cold” and reduces “movement grip strength” in mice, AI-treatment helped.

A.3. SFN = Small Fiber Neuropathy (pain)

2021 Advances in the Management of Small Fiber Neuropathy - PubMed
2020 Fibromyalgia syndrome-A laser-evoked potentials study unsupportive of small nerve fibre involvement - PubMed unsupportive
2019 Current Diagnosis and Treatment of Painful Small Fiber Neuropathy - PubMed
2018 Fibromyalgia and small fiber neuropathy: the plot thickens! - PubMed
2015 The Role and Importance of Small Fiber Neuropathy in Fibromyalgia Pain - PubMed
2014 Small nerve fiber involvement in patients referred for fibromyalgia - PubMed subset

A.4. AV-shunt-disorder

Biotech Research 2013/2016: Hand nerves increased in FM (was: New Research) - #35 by JayCS

A.5. Neuroendocrine

Psychological stress and fibromyalgia: a review of the evidence suggesting a neuroendocrine link

A.6. Mitochondria/ATP/Q10

Many studies about Q10 & FM mention this connection as a cause (or biomarker?).
View held by Bodo Kuklinski, Rostock.

A.7. Underlying issues like chronic pain, sleep disorder, low GABA, other diseases (e.g. SPD)

Due to @Sheila_W 's idea: Fibromyalgia References: Causes, symptoms, treatments (to be intertwined) - #21 by JayCS

When people occasionally seem to have been healed or find other underlying issues

Chronic pain idea: Cfs - #6 by SK1

GABA improves 10+ of my symptoms

Now I’ve got my pains down, it often feels like that a sleep disorder is the main part of my fibro.

Stiff Person’s Disorder (cf. @Freedom): Good news! I don’t have Stiff Person’s Syndrome

A.8. genetic predisposition: twins; translocator protein gene

Occurs more in some families, also in twins. 15% increased likelihood in twins https://www.painscale.com/article/7-possible-causes-triggering-fibromyalgia-pain

translocator protein gene, Kosek 2016: The translocator protein gene is associated with symptom severity and cerebral pain processing in fibromyalgia - PubMed

translocator protein gene Fanton 2021 (with Kosek) The translocator protein gene is associated with endogenous pain modulation and the balance between glutamate and GABA in fibromyalgia and healthy subjects: a multimodal neuroimaging study - PubMed TSPO is important for pain, so meds shd target that.

A.9. (Not accepted in any way: Extinction memory damage, EMD

New hypothesis on the origin of FMS and related diseasesThe EMD hypothesis)

A.10. (Unclear idea: HPV vaccination syndrome)

HPV vaccination syndrome: A clinical mirage, or a new tragic fibromyalgia model - PubMed 2018.

- ...


B. BIOMARKERS ('tests' for FMS, more validation needed)
B.1. Proinflammatory/neuroinflammatory cytokines (IL-6, IL-8) / chemokines / mast cells...

cf. EpicGenetics new blood test for Fibromyalgia - #18 by JayCS
Fibro doesn’t cause inflammation in the normal sense, but recent research has shown some neuroinflammatory markers (Des).
Neuroinflammation in Fibromyalgia

Study on Fibromyalgia and cytokines" 2014

Current evidence suggests that cytokines and especially chemokines may have a role in the pathogenesis of this syndrome. Cytokines are small soluble factors that work as immune system messengers. They can be classified as pro-inflammatory and anti-inflammatory cytokines. Chemokines are a special kind of pro-inflammatory cytokines that guide the movement of circulating mononuclear cells to the injured side. Some pro-inflammatory cytokine levels (i.e. IL-1RA, IL-6, and IL-8) and, recently, some chemokines’ levels have been found to be increased in patients with fibromyalgia. Thus, herein we review the current knowledge regarding the role of cytokines in fibromyalgia patients and their possible clinical relevance.
“Low-grade chronic inflammation mediated by mast cells in fibromyalgia: role of IL-37”: Mast cells are involved in FM by releasing proinflammatory cytokines, chemokines, chemical mediators, and PGD2. Ah, I’d heard of mast cells before.
Interesting to me cos of my whole-body cryotherapy is this one: Serial whole-body cryotherapy in fibromyalgia is effective and alters cytokine profiles" - very new: Adv Rheumatol. 2021 Jan 13;61(1):3.
Plasma Cytokine Levels in Fibromyalgia and Their Response to 15 Weeks of Progressive Resistance Exercise or Relaxation Therapy - PubMed 2018, done 2010, exercise made no difference.
Comparison of the Levels of Pro-Inflammatory Cytokines Released in the Vastus Lateralis Muscle of Patients with Fibromyalgia and Healthy Controls during Contractions of the Quadriceps Muscle--A Microdialysis Study - PubMed Christidis 2015 no correlation with muscle pain.

Also wondering if GABA and its derivatives are related to this, cf. the updated GABA-thread GABA & derivatives, gabapentin (Neurontin), pregabalin (Lyrica), phenibut, baclofen, picamilon

B.2. Salivary Biomarkers

Application of Salivary Biomarkers in the Diagnosis of Fibromyalgia - PubMed

B.3. Muscle pressure

Evidence that Muscle Pressure is Almost Three Times Higher than Expected in the Trapezius Muscle Opens a Pathway to Identify Fibromyalgia Pain with a Definitive Test
https://www.jrheum.org/content/jrheum/early/2020/12/10/jrheum.191068.full.pdf
https://doi.org/10.3899/jrheum.191068
https://frankleavitt.weebly.com
Painfully High Muscle Pressures in Fibromyalgia Put Old Paradigm to the Test - Health Rising Criticism that the biomarker doesn’t explain much and treatments such as Mg and HBOT (oxygen) to improve consequent muscle oxygen is not mentioned in the study.
(My answer here: Pardon Our Interruption)

B.4. Less gut bacteria & serum: molecular biomarkers and altered glutamate metabolism

Gut microbiome and serum metabolome analyses identify molecular biomarkers and altered glutamate metabolism in fibromyalgia - PubMed 2019:
We found that the diversity of bacteria is reduced in fibromyalgia patients. The abundance of the Bifidobacterium and Eubacterium genera (bacteria participating in the metabolism of neurotransmitters in the host) in these patients was significantly reduced. The serum metabolome analysis revealed altered levels of glutamate and serine, suggesting changes in neurotransmitter metabolism. The combined serum metabolomics and gut microbiome datasets showed a certain degree of correlation, reflecting the effect of the microbiome on metabolic activity. We also examined the microbiome and serum metabolites, cytokines and miRNAs as potential sources of molecular biomarkers of fibromyalgia.

Conclusions: Our results show that the microbiome analysis provides more significant biomarkers than the other techniques employed in the work. Gut microbiome analysis combined with serum metabolomics can shed new light onto the pathogenesis of fibromyalgia. We provide a list of bacteria whose abundance changes in this disease and propose several molecules as potential biomarkers that can be used to evaluate the current diagnostic criteria.

B.5 Hormones: serotonin, noradrenaline, dopamine, cortisol...

Hormones “Research has found people with fibromyalgia have abnormally low levels of the hormones serotonin, noradrenaline and dopamine in their brains.”
“Some researchers have also suggested that changes in the levels of some other hormones, such as cortisol, which is released when the body is under stress, may contribute to fibromyalgia.” (Des)

B.6 protein backbones and pyridine-carboxylic acids using vibrational spectroscopy

Hackshaw 2019 et al. Metabolic fingerprinting for diagnosis of fibromyalgia and other rheumatologic disorders - PubMed

...

C. Possible general STARTING POINTS
C.1. Virus Infections:

such as flu, swine flu, Epstein-Barr-Virus (EBV).
But the connection is only slight:
Real studies are >30 years old and don’t really see much of a connection
1987: The "chronic, active Epstein-Barr virus infection" syndrome and primary fibromyalgia - PubMed
1989: The chronic fatigue syndrome: definition, current studies and lessons for fibromyalgia research - PubMed
These are the newest connections made:
EBV Is The Possible Cause Of Fibromyalgia, Research - Fibromyalgia Resources
Epstein Barr Virus and Fibromyalgia Connected - Wellness Resources
(interesting to me, as I’m using glutamate and serotonin increasing amino acids like GABA, whilst catecholamines are also something Trudy Scott recommends amino acids for.)

C.2. Psychological:

Trauma, stress, panic disorder,
bipolar disorder (The Co-Morbidity between Bipolar and Panic Disorder in Fibromyalgia Syndrome - PubMed)

C.3. Functional - intolerances, deficiencies:
10 causes: 1) gluten, 2) candida, 3) thyroid, 4) mg/D3/B12, 5) SIBO/leaky gut, 6) mycotoxins, 7) mercury fillings, (8) adrenal fatigue as result, 9) MTHFR mutations (B6, B12, folinic acid nec.)), 10) glutathione deficiency

10 Causes of Fibromyalgia Your Doctor May Not Know About = https://www.prohealth.com/library/10-causes-of-fibromyalgia-your-doctor-doesnt-know-about-32779
Mercury: Can mercury in amalgam fillings cause fibromyalgia? (from Plasmaboy)

SIBO

https://bodyecology.com/articles/the-hidden-cause-of-fibromyalgia-a-natural-treatment-for-pain/

Fructose (& fructans) decreasing serotonin

Fibromyalgia Syndrome: A Metabolic Approach Grounded in Biochemistry for the Remission of Symptoms = Fibromyalgia Syndrome: A Metabolic Approach Grounded in Biochemistry for the Remission of Symptoms - PubMed (2017): Improving the low serotonin=5-HT levels in FMS by reducing fructose (= some carbs) and increasing trytophan in food intake, instead of taking (L-)tryptophan(=Trp), might alleviate and also be better for the microbiota, interrupting a vicious circle.
“The core of the hypothesis is that a gastrointestinal malabsorption has a central role as a primarily cause of FMS and that it is mainly due to fructose. This way, the core of the treatment is the contrast of Trp malabsorption, favoring its normal absorption.”
“the hypothesis springs from the observation of marked worsening of pain and stiffness in a FMS patient after a breakfast of fruit, marmalade, and rye bread…”
" Although fructose malabsorption plays a primarily role, it appears reasonable that it is not the sole cause of FMS, mostly because the incidence of fructose malabsorption (28) is well greater than the FMS ones (4). Maybe, it can just be considered the main risk factor for FMS."
“Theoretically, the most efficacious management would be a fructose free, fructan restricted, lactose free, sorbitol free, aspartame free, low sucrose diet, together with proper Trp intake.”
" Excessive amount of fructose is very easy to be reached, as modern Western diets are rich in fructose due to industrial food containing high fructose corn syrup (HFCS), fresh fruit that naturally contains fructose, honey, soft drink, and beverages containing HFCS and saccharose (27, 28, 34, 47). In addition, wheat and the most of cereals, the most of legumes and many vegetables contain fructans (28), contributing to increase the total amount of ingested fructose.
Lactose might have the same consequences of fructose in the gut, especially if the enzyme lactase is deficient."
" Trp supplements (like Trp tablets) are not suggested in any way, as their intake has potential for important side effects by themselves or due to the interaction with serotonergic drugs, up to life-threatening effects related to serotonin syndrome (48).
Suggested food containing Trp are: meat, eggs, fish, rice, potatoes, dark chocolate, and walnuts."
"A further note concerns monosodium glutamate (MSG) and aspartame: their withdrawal from the diet is suggested too.
“the mean rate of 5-HT synthesis is significantly lower in women.”
“The association between decreased serum Trp concentrations and sugar (fructose and lactose) malabsorption was observed in experimental studies significant only in women.”
“Trp can only be transported across the blood–brain barrier in its free form by the competitive and non-specific l-type amino acid transporter” (16). “Trp reaches the brain when ingested food is rich in this amino acid and not excessively rich in other large neutral amino acid (LNAAs), that could compete with it” (15).


D. Causing LONG-TERM FLARES (weeks or months)

http://www.healthcentral.com/chronic-pain/c/5949/151398/fibromyalgia/
found by @Sheila_W here 10 Causes of Fibro Flares
Flares/flare-ups can take hours, days, months or years, can start 48h later than the trigger.
Journals, keeping a log, diary, blog can help identify triggers/causes.

  • D.1. Illness, common cold…
  • D.2. injury,
  • D.3. long-term stress (often hard to identify)
  • D.4. allergies, incl. seasonal,
  • D.5. sleep problems
  • D.6. vicious circles of sleep, stomach/gut problems, etc.
  • D.7. hormonal changes (menstrual cycles, menopause, etc.)
  • D.8. treatment changes
  • D.9. meds/supps/herbs, even without changing them.
    e.g. Statins may be a nocebo! https://jamanetwork.com/journals/jama/fullarticle/2779202
  • D.10. traveling:
    Travel often disrupts lifestyle factors like sleep, nutrition, environmental conditions and activity levels, which can bring on a flare-up. NAD+ for Fibromyalgia - NAD Amino Acid Fights Chronic Fatigue

E. Causing SHORT-TERM FLARES (hours or days)
E.1. Physicallly overdoing it/overexertion:

carrying on physical activities altho we are over our limits/capacities

E.2. Mental Stress

social: socializing/peopling

E.3. Weather, esp. temperature, esp. changes

Cold, hot, sunny, extremes, changes, wind, humidity, seasonal allergies, rainy

E.4. sensitivies: light, noise, smells

E.5. changes in sleep routine


Version 2021-08-11 = August 11th

Symptom list

  • To pinpoint/describe sensations & (eventually) look up likely treatments, not to diagnose FMS.
  • Every symptom may be due to something else, so get checked if you want to be sure it isn’t.
  • Ordered by relatedness/relevance to FMS (e.g. pain or sleep), which can suggest the order of treatment trials.
  • All FMS-symptoms can be “treated” alone, whether locally or generally.
  • This is trying to be the most helpful symptom list, not necessarily the longest. (But I’ve used and am improving some of the longest, and there are 200+ here at the moment.)
  • Revised Fibromyalgia Impact Questionnaire (FIQR), 2009, Bennett et al
  • New Clinical Fibromyalgia Diagnostic Criteria 2010 (ACR?)
To Do/Work in Progress

2021-07-14: Numbering (for navigation) may not be worth it.
Starting point: 200+ Symptoms of Fibromyalgia (Hard to Believe). What are Yours? - Fibromyalgia Resources from the thread Symptoms lists: 100, 200, full... ("64")
Being changed to alphabetical PLUS ordered by body parts, leaving out repetitions, things I’ve not heard of much or which are much too specific (e.g. everything “cognitive”!)and ordering things more sensibly (most important ones first…), adding specifications"]

The following symptom, dry eyes, is an example of just one "side-"symptom with about 15 characteristics, 20 causes/triggers and 20 treatments (just from 2 sites…). Most causes and treatments are very specific. Wind however also triggers core symptoms for me. Whilst such connections may be interesting & helpful they wdn’t generally justify a databank-overload. Maybe it’d make sense to sort symptoms.

Dry eyes: itchiness, hurting, stinging, burning, scratchy, stringy mucus, light sensitivity, eye redness, foreign-body sensation, contact lense difficulty, nighttime driving difficulty, watery eyes (as response), blurred vision, eye fatigue…
**

Dry eyes: 15 treatments:

What Is Dry Eye Syndrome? - Optometrists.org
Warming by cupping warm hands, then Gua Sha, gently.
Dry eyes - Diagnosis and treatment - Mayo Clinic Various therapies, 4 drop types, other things like intense-pulsed light therapy followed by massage of the eyelids, adding omega-3 fatty acids (flaxseed oil, castor oil eyedrops and acupuncture:

Dry eyes: 10s of triggers

Heating, wind,
Dry eyes - Symptoms and causes - Mayo Clinic

Example of a symptom-group, ALSO an image to explain to others, like “run over by a truck/car/train/rhino” or “lead suit”…
Flu-like feeling: heaviness, Ache, fatigue, more pains, rest need, sleep need, sleep long. With or without fever-feeling, sinuses/runny nose (allergy?), headaches (migraines).


Docs that still don’t know, acknowledge, understand fibro
(Treatment:) If you doc doesn’t know fibro & doesn’t want to get educated by himself or by brochures (e.g. FMA UK, internet pages) or by you: Phone around, asking at the desk how many fibromites they treat. (Accurate descriptions of symptoms.)


Symptom groups: 0. ‘Invisibility’, Chronicity, Flares. 1. Pain 2. Fatigue, 3. Sleep, 4. Psychological, 5. Neurological, 6. Fibro Fog, 7. Body temperature sensation, 8. Sensitivities, 9. GI/IBS, 10. Vision, 11. Urogenital, 12. Skin, 13. Dryness, 14. Lungs, 15. Heart, Blood vessels (16. Hair, 17. Nails, 18. Mouth, 19. Weight)


0. 'Invisibility', Chronicity, Flares

Docs can’t find anything (scans, bloods) - core symptoms 1-4 below plus diagnosis of exclusion.
Docs often don’t know about, acknowledge or understand it.
People incl. friends & partners can’t see anything, don’t understand, see us smiling: “But you look OK.”
Chronic: Longer than 3 months is the definition for FM.
Flares: Phases where the symptoms get worse than usual, due to Fibromyalgia References: Causes, symptoms, treatments (to be intertwined).


1. PAIN & stiffness - all over / parts of the body - toe to top

Remember: “Pain caused by Fibromyalgia isn’t a threat” (‘radical acceptance’ - Jemimas psychologist).
Possible treatments: Everything, specifically Epsom salt-baths (magnesium sulfate)

1.0.1 All over at the same time

(Treatment: Overstraining something: Twist-stretch: twist limbs, back or neck & hold 10-20’’.)
Allodynia = touching pain, cf. hyperalgesia
Ache (esp. limbs)
Feeling run over by a truck=lorry/car/train/rhino/plane/whatever
Feeling like walking in a lead suit… / like the tin can man
Hyperalgesia = amplified pain, cf. allodynia
Stiffness, morning
Stiffness, all day, after not moving for a while, after overexertion. Cf. stiff person’s/man syndrome (not nec. combined with to pain)
Muscle weakness
Pain moderate to severe
Tender points (≠ trigger points)
Trigger points (≠ tender points)

1.0.2 Certain areas all over, maybe alternating

“Joint” pain (probably tendons, i.e. tendinomyopathy)***
Muscle cramps (bigger area)
Muscle spasms (smaller area)
Muscle pain
Muscle twitching
Pains alternate, seem to move
Sighing, breathing in, etc. frequently (also fatigue, also psychological)
Tensed muscles, unconsciously
Voodoo doll-poking sensation, random places
Weakness (severe) or paralysis of an arm or leg

1.1. Legs

Feet - Plantar arch or heel pain
Thighs
Restless Leg Syndrome = RLS
Hip
Sciatica-like pain (from back down the legs)

1.2. Torso/Trunk

Back pain:
Disk/Discs Degeneration, DDD = Degenerative Disc/Disk Disease
Lower back pain = SI-joint = sacroilial joint = sacrum and coccyx)
Abdomen/belly
Scoliosis (sideways curve)
Hunchback (kyphosis)
Chest
Chest, mimicking heart attack
Ribs - Inflamed Rib Cartilage = Costochondritis
Breasts, lumpy & tender
Collarbone = clavicula
Neck pain: Epsom salt-baths (magnesium sulfate)

1.3. Arms

Elbow
Weak achy muscles

1.4. Head

Jaw, TMJ syndrome (= temporomandibular joints)
Teeth / tooth / gums
Head - Headache
Scalp Pain (like hair being pulled out)


2. FATIGUE, slowdown of activity

Activity level significantly decreased
Fatigue from physical exertion, pain, stress etc.: 11 types of fatigue: esp. tiredness, ache, lack of energy, mental; Spoon theory
Sighing, breathing in, etc. frequently (also pain, also psychological)


3. SLEEP

sleep lab psychiatrist, sleep lab neurologist, sleep lab pneumologist, multi-disciplinary
Alertness/energy best late at night
Sleep/wake schedule altered
Awakening frequently
Falling asleep difficult
Staying asleep difficult
Excessive sleeping = Hypersomnia
Hypersomnia = Excessive sleeping
Narcolepsy / Falling asleep at random and sometimes dangerous moments
Sleep pattern light or broken
Muscle spasms/twitches at night
Sleep disturbances
Teeth grinding
Tossing and turning
Un-refreshing or non-restorative sleep
Vivid or disturbing dreams/nightmares


4. PSYCHOLOGICAL / MIND / EMOTIONAL

Doubting it / “Imposter syndrome”
Not accepting it
Overdoing it (dilemma of feeling better & normal during & perhaps for a time directly after it)
Sighing, breathing in, etc. frequently (also fatigue, also pain)

EMOTIONAL, esp. depression (part or consequence), anxiety, incl. PTDS

Depression:
Appetite decreased
Crying frequently / easily
Helpless feeling
Hopeless feeling
Enjoyment, inability to previously enjoyed activities
Mood depressed
Suicidal thoughts / Suicide attempts

Anxiety:
Anxiety or fear when there is no obvious cause
Fear of someone knocking on the door / telephone ringing
Fears, irrational
Panic attacks
Phobias
Self-confidence, lacking; feeling worthless
Social anxiety

Mood:
Awareness of symptoms heightened
Irritability
Mood swings, like anger outbursts, uncontrollable rage, abrupt and/or unpredictable
Overreaction
Personality changes


5. NEUROLOGICAL

Nerves:
Burning nerves
Numbness sensations
Tingling sensations
Tinnitus (ringing in one or both ears)
Trembling, tremor
Wrist: Tendons swell & press on nerves: carpal tunnel syndrome, CTS

Not that close to fibro:
Seizures and Seizure-like episodes aren’t FMS (I have them myself)


6. "FIBRO FOG": 1. Sensations, 2. Cognitive, 3. Speech, 4. Balance, 5. Perception, 6. Coordination

Not easy to separate these areas from one another.
Neurologist, opthalmologist, neuro-ophthalmologist

Fibro-Fog / Brain fog: Delayed reaction to physical activity or stressful events. Appears like but ≠ adult ADHD.

General sensations:

Confusion
Dizziness, e.g. vertigo
Light-headedness
Spaced out feeling

Cognitive / Thinking unclear, difficulties:

Attention/concentration difficult, easily distraction
Decision-making difficult
Distance-judging difficult (when driving, etc.)
Judging difficult
Orientation (Disorientation) (directional or spatial, really or feeling)
Recognizing (routines, left/right, number/word orders)
Remembering (difficulty remembering, short-term or long-term, losing things, forgetting)

Speech:

Expression difficult (words, numbers)
Speech slowed, stuttering, stammering
Understanding difficult (words, numbers)
Word-finding difficulty/using wrong words.

Perception (Seeing, hearing, smelling):

Not seeing what you’re looking at
Smell hallucinations
Sensitivities → there.

Balance:

Balancing difficult
Walking wobbly

Coordination poor:

Bumping into things
Dropping things frequently
Staggering gait
Stumbling, tripping frequently
Walking clumsily


7. BODY TEMPERATURE SENSATION

Cold or hot feeling, or alternating
Flu-feeling, cf. Ache, Allodynia (touch pain), Feverishness, Hyperalgesia (amplified pain)
Hands/feet, poor circulation there: Raynaud Syndrome.
Hot flashes = hot flushes
Sweats → Skin


8. SENSITIVITIES / INTOLERANCES

Alcohol
Allodynia (hypersensitive to touch)
Chemicals in cleaning products, perfumes, etc.
Cold
Foods
Heat
Light sensitivity = photophobia
Noise intolerance
Odors = smells
Sensory overload
Pressure & humidity changes
Sun
Temperature changes
Weather changes
Wind


9. GASTROINTESTINAL (gut: IBS = Irritable Bowel Syndrome & stomach: hyperacidity or hypoacidity?)

Abdominal cramps
Appetite decreased
Appetite increased
Bloating
Food cravings (e.g. for carbs)
Constipation frequent (e.g. IBS-C)
Diarrhea frequent (e.g. IBS-D)
GERD = Gastroesophageal reflux disease = Reflux
Heartburn
Intestinal gas
Irritable bowel syndrome = IBS
Nausea
Rectum burning irritation (foods?)
Reflux see GERD
Regurgitation
Stomachache
Stomach burning
Vomiting
Weight gain
Weight loss


10. EYES / VISION poor

eye specialist, oculist, ophthalmologist
Eye pain
Vision blurry, difficulty switching focus
Vision ability changes, frequent changes in ability to see well
Vision poor at night, e.g. driving


11. UROGENITAL pain

Bladder pain
Endometriosis
Urination frequent
Impotence / Libido (sex drive) decreased
Irritable bladder, Overactive Bladder (OAB)
Menstrual problems
Pelvic pain
Premenstrual syndrome (PMS) worse
Prostate pain
Urination painful, altho no UTI (= Urinary tract infection)
Vulvodynia


12. SKIN

Bruising easily
Eczema/Dermatitis
Itchy/irritable skin
Psoriasis
Rashes
Scalp pain cf. pain: head.
Scarring easily
Skin hot/dry
Sores

Swellings:

Bumps
Edema
Lipoma
Lumps
Lymph nodes swollen, esp. neck & underarms
Swollen feeling

Sensitivity to the sun
Sweating


13. DRYNESS (Sicca syndrome?)

Eyes dry (Sjögren’s?)
Mouth dry (Sjögren’s?)
Teeth & gum problems
Throat dry (sore, hoarse, speaking, singing, thirst increased),
Stomach dry (hyperacidic)
Gut dry (constipation),
Skin dry


14. LUNGS

Air hungriness/hunger
Breath short with little or no exertion (esp. using arms above the head)
Breathlessness
Gasping for breath


15. "CARDIOVASCULAR" (Heart, blood vessels):

Blood pressure increased (due to pain?)
Hemorrhoids (piles)
Heart attack-like pain that mimics (costochondritis?)
Heartbeat fluttery
Heartbeat irregular
Heart palpitations
Heartbeat rapid
Pulse loud in ear


16. HAIR

Hair dull, listless
Hair: heavy and splitting cuticles
Hair: temporary loss

17. NAILS (praps Psoriatic Arthritis = PsA)

Nail beds irritated
Nail ridges pronounced
Nails that curve under

18. MOUTH cf. 13. Sicca

Dental problems
Periodontal (gum) disease
Canker sores, mouth ulcers, e.g. aphthous stomatitis

19. WEIGHT

Weight gain, unexplained,
Weight loss, unexplained


Version starting 2021-08-11 = August 11th

Treatment list

Shortest summary/appetizer

  1. mind: pacing, diaries for symptom tracking etc., simplifying, relaxation, sleep hygiene etc.,
  2. physio: e.g. osteopathy, chiropractic; esp. self-treatments, e.g. Asian, stretches, TENS, praps cryotherapy.
  3. diet: healthy, e.g. Mediterranean, or eliminating various things.
  4. environmental changes in bedroom and weather protection.
  5. Med/supp/herbs: Esp. supps, check if anything is low (for FM esp. D3 and B12), try magnesium types (for FM esp. malate) and esp. the amino acids (check Trudy Scott’s amino acid questionnaire.)

Full list

Systematically here, alphabetically: first try above. 2021-07-17: Numbering reduced again.
Therapist-types named for each treatment field (if you can, get 2nd/3rd opinions).
If your doc/therapists/physiotherapist doesn’t know fibro & doesn’t want to get educated by himself

  • show info material like brochures (e.g. FMA UK, internet pages),
  • learn to accurately describe your symptoms,
  • search for experts or knowledgable or acknowledging docs on the web, incl. some forum resources,
  • ask support groups for good docs,
  • phone around for a new good doc, asking at the desk how many fibromites they treat.

Scientific evidence is almost only possible for meds and their many harmful side effects, so almost everything else here is “complementary”, wikipedia often writes “pseudoscientific” or like most studies concludes that more high-quality research is necessary.
This meta-review (2021) for instance cdnt “prove” anything helps for fibro except that CBT (psychotherapy), CNS depressants & antidepressants can help pain & Quality of Life, at least in the short & medium term, of which CNSd are all highly addictive.

A. MIND (1. pacing, 2. understanding, 3. therapy, 4. relaxation, 5. sleep, 6. fog help, 7. & body)

Psychologist, psychiatrist, psychotherapist, counsellor, pastor, helpdesk, outreach clinic, holistic/functional medicine doctors

A.1 Pacing: Stopping in time, resting, fatigue,
  • finding, learning & keeping under (or not too far/long over) the invisibly moving sweet spots & limits of each activity,
  • not overdoing it; not trying to keep up with us before fibro or with others,
  • incl. socializing, incl. evenings, incl. work stress, amount, type or altogether.
  • symptom tracking incl. pain tracking using pain resources, various diaries, keeping track of what you’ve done and how you’re feeling before, during & after, adapting with abbreviations to your need, cf. JayCS’s Fibro Blog
  • Dilemma 1: Sometimes (when we can do something with little or no pain) we feel like carrying on doing it to feel ‘normal’, which is good for our mental hygiene and to get our body back into better shape at least once in a while. The art is finding how to do it in a way that the consequences are limited.
  • Dilemma 2: The repercussions of overdoing it often come delayed, not during or immediately. after an activity. That makes it harder to spot the sweet spots, making diaries, analysis and the suggestions of others (people around us as well as fibromites) necessary.
  • A good not-to-do-list (© 2013 Toni Bernhard)
A.2 Understanding/Being understood: Memes & other support, e.g. forums, support groups = mental hygiene (German: "Psychohygiene"), information, research, accurate symptom description.

Memes
Emotionally…
Educating ourselves, e.g.
books,
videos,
online resources
Educating others (docs, partners, friends, bosses, colleagues, acquaintances ), e.g.
memes,
better symptom descriptions,
brochures & similar summaries

A.3 psychotherapy, e.g. CBT (& b. CPT), psychoanalysis, Gestalt therapy, Trauma therapy (CPT) for PTSD, pain management, Anxiety therapy, depression, with or better without using meds, cf. T.E.1, counselling.
A.4 Relaxation techniques

Alexander Technique
Autogenous/autogenic training
Calming music
Calming nature sounds
Deep Breathing exercise
Knitting, crocheting etc.
Meditation
Progressive muscle relaxation (Jacobsen)
Reading
Self-hypnosis
Sun (if OK)
Yoga Nidra (‘yogic sleep’)

A.5 Sleep hygiene
A.6 Reminders (for brain fog)
A.7 Body psychotherapy → B.1 & B.2


B. PHYSICAL (1. Exercise, 2. Manual, 3. Meridians 4. Breath 5. Cold/Heat, 6. Electro, 7. Water, 8. Devices, 9. Positioning, 10. Sports, 11. Non-touch)

*TCM doctor (Chinese trained if possible): acupuncturist, Chinese herbs/teas, holistic/functional medicine doctor,
Physical therapist = physiotherapist, incl. massage therapist, acupressurist, acupuncturist, chiropractor, osteopath, Rolfers, teachers of the various types of yoga, tai chi, qi gong.
“Physios are better with fascia issues (than osteopaths). Sports physios in particular.” (??))
“Good physiotherapists are more important than good docs, unless you want mainly meds.”

Studies: seems to help

B.1 Physical therapy exercises
B.1.1 by Body parts

Legs
Back
Arms
Hands

Jaw
Neck

B.1.2 All over

Aqua jogging, as one form of water/“Hydrotherapy” (aqua fit, aqua therapy…) (cf. hot/cold)
Body Psychotherapy (influenced by Reich & Jung, many schools/branches)
Feldenkrais Method
Hakomi Method (somatic/body psychotherapy, mindfulness)
Pilates
Qi Gong / Qigong
Somatic experiencing (Peter A. Levine, for PTSD)
Stretching, cf. Yin Yoga gentle, dynamically, short Twist-Stretching
Tai Chi
Yin yoga stretches
Yoga, (“Hatha” yoga with asanas/poses), Styles, restorative/chair/senior, background

B.2 Manual / Massages and Bodywork

Body Realignment by Jan Trewartha (incorporates aspects of Fascial Release, Orthobionomy and Positional Release)
Bowen Technique pro & con
Connective tissue massage
Dry needling (trigger point dry needling)
Manual therapy = manipulation (muscles, joints)
Myofascial release MFR, self-myofascial release) Foam roller video
Myofascial trigger point massage, = MTrPs, cf. PRT
Osteopathy (incl. Counterstrain, Positional Release Technik PRT/Jones Technik - gentler!, craniosacral therapy = CST, visceral therapy, parietal therapy)
Postural Integration (form of body psychotherapy, cf. Gestalt therapy)
Reflexology (incl. foot reflexology, ear reflexology like ear-acupressure and ear-acupuncture)
Rolfing
Scar and Bonework (Sharon Wheeler)
Shiatsu (Japanese form of massage)
Trager approach

B.3 Meridian system (Asian): Acupuncture, acupressure

Acupuncture (best only few needles though!)
Ear-acupuncture
Acupressure (therapist)
Acupressure points / palpation points (self help, see devices)
Ear-acupressure (Penzel)

B.4 Breath

Pranayama yoga breathing exercises (… Yoga),
Wim Hof’s breathing-exercise, Wim Hof Method, WHM (Yoga-influenced)

B.5 Cold / Heat (sometimes moist)

Cold/heat overview
B.5.1 Whole body
B.5.1.1 Cold showering or ice baths inspired by Wim Hof, cf. WHM/breath-holding exercise) vs. warm showers (or baths, e.g. with magnesium = Epsom salts; mudbaths) or alternating (e.g. after sauna) (form of hydrotherapy)
B.5.1.2 Whole body cryotherapy (cold barrel, cold chamber, cold sauna) or heat chamber.
Cold down to -150°C (-240°F) for 3 mins.
B.5.1.3 heated mattress pad
B.5.1.4 blankets,
B.5.1.5 sauna
B.5.1.6 Sun! :sun_with_face: (if you’re OK with it)
B.5.1.7 Acupressure or acupuncture to stimulate temperature tolerance
B.5.2 Parts of the body
B.5.2.1 Hand grain baths (15’, canola, alternatively rice, spelt, wheat) cold or hot.
B.5.2.2 Topical/localized cryo therapy: = Partial body cryotherapy = PBC or heat (e.g. using an air hose)
B.5.2.3 Smaller Cold pads / ice packs or heat pads, hot water bottle, grain cushions (e.g. spelt, cherry, wheat), or gel pads for either, wherever necessary, bag of frozen peas.

B.6 Electrotherapy

Careful: Triggers focal seizures (that’d be me)
Cranial electrotherapy stimulation (CES, e.g. “Alpha-Stim” (R)"
Electroacupuncture
Microcurrent unit (gentler than a TENS unit), Microcurrent electrical neuromuscular stimulator
TENS unit (pads) or TENS pen.
TMS, Transcranial magnetic stimulation (= brain magnetic stimulation)) and transcranial direct current stimulation (tDCS)
Bioresonance diagnosis/therapy

B.7 Water therapy, hydrotherapy

moving in certain ways in water (e.g. “aquajogging”, “aquafit” “aqua therapy”) cf. B.1.2
using hot or cold water etc. cf. B.4

B.8 Mechanical devices
B.8.1 Acupressure devices

Acuball, for muscles & joints, e.g. for TMJ (cf. B.7. acupressure),
Acupressure mat (‘Acumat’)
Energy roller
Foot roller (“krupa chakra”)
Power mat (pyramid mat)
Spine roller
Teishein needle for percussion pressure

Cupping
Foam roller for B.2 MFR
Footwear change for skeletal problems
Gum shield, mouth guard, tooth guard: for grinding teeth, bruxism
Insoles change for skeletal problems
Kinesio tape/taping
Nose strips for better breathing, more oxygen
Traction

B.9 Changing positions regularly

Arms up
Feet up = legs up
Lying down; finding new lying positions (pillows etc.)
Standing working station (bar stool, bar table)

B.10 Sports (incl. for stress...)

Cycling, bike
Swimming
Walks
Weight training
Workout. For Muscles, tendons, fasciae, joints, breathing, overall.[/details]

B.11 Non-touch (pseudo-scientific)

Breathwork respiration techniques
Energy healing (New Age)
Reiki
Therapeutic touch (non-contact therapeutic touch, NCTT)


C. BIOLOGICAL (1. Diets, 2. essential oils, 3. oxygen/ozone)

holistic/functional medicine doctor, nutritionist, alternative practitioner, allergologist…

C.1 Diets

Links

sorted by symptoms: put there

For FMS: Fructose & fructans free
For Gut / IBSD/C: Fructose free, elimination diet. BTW: Belt etc. loose around the waist.
For stomach - hyperacidic: elmination diet, e.g. nothing acidic, i.e. sour, spicy, onion-like.
For Bladder: … pumpkin seeds
For Cardiovascular: Mediterranean diet

Quick overview of diets here under “I do still have questions about the ketogenic diet”

C.1.1 dairy free (but perhaps meat)
C.1.2 fructose/fructans free (for FMS)
C.1.3 gluten free,
C.1.4 grain free,
C.1.5 nightshade free,
C.1.6 sugar free
C.1.7 vegan (no dairy, no meat etc.)
C.1.8 vegetarian (no meat etc., but dairy)
C.1.9 dairy free plus grain free

C.1.10 low carb/Atkins, incl.:
C.1.11 Keto diet / ketogenic diet (high fat, low carb, low protein) and
C.1.12 low FODMAP (fermentable oligo-, d i-, mono-saccharides and p olyols, i.e. all short-chain carbs), incl. fructans (see fructose free above),
C.1.13 candida diet (= low on simple carbs)
C.1.14 low histamine
C.1.15 low oxalate
C.1.16 low salicylate

C.1.17 paleo diet (palaeolithic, caveman, stone-age, = no dairy, grains, sugar, legumes…), incl.:
C.1.18 AIP diet (Autoimmune protocol) / anti-inflammatory: paleo minus nightshades, nuts, seeds, sweeteners and egg; no wheat/gluten, milk
C.1.19 plant paradox (lectin free) for leaky gut
C.1.20 virgin diet (no gluten, dairy, soy, eggs, corn, peanuts and sugar)
C.1.21 Mediterranean diet: unsaturated fats (e.g. omega 3: flaxseed oil) fats & complex carbs
C.1.22 pegan, a vegan form of paleo, for fibro (‘nutrition docs’ on German TV/youtube)
C.1.23 elimination diet using diary for food sensitivities contributing to IBS & stomach hyperacidity or pain, or the whole30 elimination diet.
C.1.24 Hay diet (“separate” proteins & carbs in one meal), seperate plant & dairy protein) for IBS
C.1.25 organic foods
C.1.26 whole foods (i.e. non-processed)
C.1.27 fasting, e.g. intermittent fasting

C.1.28 healthy: Unsaturated fats rather than saturated fats, complex carbs rather than simple carbs (e.g. sugar), Omega 3: flaxseed oil. 5 smaller meals, or if blood fats are high 3, not too late in the evening.

C.2 Essential Oils / Aromatherapy

capsules or topically or scents
Lavender
Swiss pine
“Morphine bomb”: majoram, lemongrass, frankincense

C.3 Oxygen

HBOT = hyperbaric oxygen therapy 2
Nose strips for better breathing, more oxygen (cf. mechanical devices)
ozone/oxygen-autohemotherapy (ozone/oxygen-injections)


D. ENVIRONMENTAL (1. Inside: air, bed, heating, light, noise; 2. outside: weather, aids)

forums, web pages, empathetic doctor, counsellor, friends, family, partner

D.1 Inside

D.1.1 Air rooms: Windows at the best time of the day to regulate heat & cold, rather than all day?

D.1.2 Bed

pillow(s), pillow-wedge
mattress
soft topper on mattress
lambskin under painful parts of the body (e.g. thighs), best under topper or sheet,
mattress pad heated
cushion, hard small spelt, or folded towel under hunchback
blanket weighted blanket or thicker continental quilt.
night clothes change
blanket change

D.1.3 Heating: moisten air, but not too much, see Better sleep - 30 wakers & stoppers
D.1.4 Light: blackout curtains or blinds, eyemask
D.1.5 Noise: ear plugs - many different types, noise cancelling earphones, talk with neighbours

D.2 Outside
D.2.1 Weather protection

Cold protection: Longjohns, “rain legs” for cycling, more socks, more clothes, layered onion-like, thick warm insoles.
Rain protection: “Rain legs” - plastic thigh shield for cycling.
Sun protection: amount, shielded…
Wind protection: Hoodie, windbreaker/windcheater.
Wind protection: windbreak, shelterbelt, shielded, blanket on balcony.

D.2.2 Aids for sitting

Chair cushion to go (restaurant, bench)
Chairs foldable to go: esp. camp chair (light).

D.2.3 Aids for walking

Bicycle
Walker/rollator


E. BIOCHEMICAL (1. Meds, 2. supps, 3. herbs)
E.1 MEDS: 1. Pain, 2. Depression, 3. Sleep/pain 4. Others

Doctors (change them if necessary, get 2nd and 3rd opinions if you’re dissatisfied and can afford to do so), GP / PCP / principal; pain doctor, rheumatologist (orthopedists), neurologist…
Life-belts when we aren’t able to cope/pace or treat, but suppress & fog over underlying issues.

E.1.1 Pain (Analgesics, Painkillers)
Cannabinoids

CBD without THC, e.g. as CBD oil: sleep & pain
MMJ = Medical Marijuana / Medical Cannabis, CBD with THC

Anti-convulsant: GABA-derivates:
gabapentin (‘Neurontin’, partial seizures, neuropathic pain, neuralgia)
pregabalin (‘Lyrica’…, for neuropathic pain, fibromyalgia, RLS, generalized anxiety disorder
phenibut (‘Anvifen’, ‘Fenibut’, ‘Noofen’, for anxiety, insomnia)
baclofen (‘Lioresal’ for muscle spasticity)
mirogabalin (‘Tarlige’ for neuralgia, neuropathic pain)

Hyaluronic acid injections (hyaluronan)

(knees, skin, eyes) (for me in the lumbar spine ‘sunburn’ in face, excrutiating pain in spine)

Local anaesthetic

Lidocaine (lignocaine) infusions, ‘Xylocaine’
Lidocaine injections with procaine or lidocaine etc. = “neural therapy” (Huneke) (= complementary medicine),

Metamizole ('Novalgin')
NMDA receptor antagonist

Dextromethorphan (DXM)
Ketamine
Methoxetamine) (MXE)
Nitrous_oxide
Phencyclidine (PCP),

NMDA receptor antagonist and Opioids at the same time

Dextropropoxyphene,
Ketobemidone
Levorphanol
Methadone
Pethidine
Tramadol (‘Ultram’… )

NSAIDs (Nonsteroidal anti-inflammatory drugs), incl. COX-2-inh.

Aspirin (acetylsalicylic acid, ASA, developed out of willow bark)
cf. combinations like co-codaprin = aspirin/codeine

COX-2-inhibitors:

Celecoxib
Etoricoxib

Diclofenac (‘Voltaren’)
Ibuprofen (‘Advil’, ‘Brufen’, ‘Motrin’, ‘Nurofen’…)
Meloxicam (‘Mobic’…)
Naproxen (‘Aleve’)

Opioids, incl. Opiates (directly derived von opium)

Embeda CR 20-0.8 (combination of opioid (morphine) and opioid antagonist (naltrexone))
Morphine (‘Oramorph’, ‘Sevredol’, …, extended-release: ‘Avinza’, ‘Dolcontin’, ‘Filnarine’, ‘Kadian’, ‘Morphagesic’, ‘MS Contin’, ‘MST Continus’, ‘MXL’, ‘Zomorph’.
Tilidine

Low Dose Opioid Antagonists

Low-Dose Naltrexone, LDN (ardent supporters)

Paracetamol (acetaminophen) (pain & fever)
SNRI (Serotonin–norepinephrine reuptake inhibitors)

Milnacipran (‘Ixel’, ‘Savella’, ‘Dalcipran’, ‘Toledomin’) (pain, depression)
Venlafaxine (‘Effexor’) (depression, anxiety, pain)

Sumatriptan ('Imitrex', migraines)
Paracetamol = acetaminophen 'Tylenol'

(add for gut: omeprazole) when paracetamol or NSAIDs aren’t enough:

Combinations

Co-Codamol = Codeine / paracetamol(=acetaminophen) (‘Emtec’, ‘Zapain’)
Co-Dydramol = Dihydrocodeine (dihydrocodeine tartrate) / paracetamol
cf. similar combination co-codaprin = aspirin/codeine

E.1.2 Depression (Antidepressants)
SSRIs, selective serotonin reuptake inhibitors

Citalopram (‘Celexa’…)
Fluoxetine (‘Prozac’, ‘Sarafem’) (depression, anxiety, OCD…)
Paroxetine (‘Paxil’, ‘Seroxat’)

E.1.3 Sleep/pain/depression/anxiety (tricylic antidepressants)

amitriptyline (‘Endep’)
nortryptyline (‘Pamelor’)

E.1.4 Sleep (sedatives, hypnotics) & anxiety/spasms (tranquilizers): CNS depressants, very addictive
Benzodiazepines incl.
  • Diazepam (‘Valium’)
  • Clonazepam (‘Klonopin’)
  • Alprazolam (‘Xanax’)
  • Triazolam (‘Halcion‌’)
  • Estazolam (‘Prosom’)‌
Non-Benzodiazepine Sedative Hypnotics incl.:
  • Zolpidem (‘Ambien’)
  • Eszopiclone (‘Lunesta‌’)
  • Zaleplon (‘Sonata’)
  • Zopiclone (‘Imovane’)
Barbiturates incl.:
  • Mephobarbital (‘Mebaral’)
  • Phenobarbital (‘Luminal‌’)
  • Pentobarbital sodium (‘Nembutal’)‌
E.1.5 Others

Guaifenesin (‘Mucinex’…, coughing = expectorant) Guaifenesin protocol: Anti vs. Pro (ardent supporters)
BCG vaccine (tuberculosis), cf. C.A.2, C.B.1. Recently Discovered Vaccine Treats Fibromyalgia Patient - Fibromyalgia Resources

E.2 SUPPS: 1. Amino acids, 2. Minerals, 3. Enzymes, 4. Hormones, 5. Vitamins, 6. Fatty Acids, 7. Kuklinski Protocol 8. D-Ribose

functional medicine doc, holistic medicine doc, alternative medicine doc, ‘environmental doc’…, some half-conventional docs etc., alternative health practicioner, nutritionist, orthomecular medicine doc

E.2.1 Amino acids

GABA = Gamma-Aminobutyric Acid & perhaps picamilon
Glutamine (not glutamic acid, despite Verla branding theirs “Glutamin”)"] German link
Glutamic acid: Is turned into glutamine, so less effective than that.
Glycine
Theanine: sleep.
(L-)Tryptophan
Tyrosine
N-Acetyl Cysteine (NAC)
5-Hydroxytryptophan (5-HTP)
Glutathione: antioxidant compound made up of the amino acids Glutamic Acid, Cysteine, and Glycine.

E.2.2 Minerals

Calcium
Magnesium types:
Epsom salt-baths = magnesium sulfate for neck & back pain cf. warm baths, B.5
Magnesium taurate for TMJ
Magnesium glycinate vs. malate combination product calming & more bioavailable & slightly less IBSD-ey vs. more ATP/energy.
Potassium
Selene
Zinc

E.2.3 Proteolytic enzymes (for Myofascial and Fibro)

Serrapeptase

E.2.4 Hormones
Melatonin: sleep (for 5 HTP & (L-)Tryptophan cf. E.2.1. amino acids)

Has Anyone Seen the Research on Melatonin? - #16 by JayCS
Shd praps analyze again whether 5-HTP helped in the winter break, as not working in the Easter break did not help:
JayCS’s Fibro Blog - #174 by JayCS

Progesterone

E.2.5 Vitamins

Vitamin B1
Vitamin B2
Vitamin B3
Vitamin B6
Vitamin B12 - basic, often one of the most nec.
Vitamin C (protect)
Vitamin D3: often very necessary
Vitamin E: 8 types.
Co-Enzyme Q10 = ubiquinone-10

E.2.6 Fatty acids

Omega 3: flaxseed oil, cf. diets
Oil pulling

E.2.7 Kuklinski Protocol

A vitamin & mineral protocol in 5 phases of 2-3 weeks each, mainly: 1. vitamin B12 injections / 2. potassium, zinc, selene / 3. vitamins B1 + B2, C, E / 4. flaxseed oil / 5. Q10)

? E.2.8 D-Ribose

a simple sugar: for pain, cramping, stiffness, CFS, FMS, mitochondria/ATP ( → C:A.6) heart,

E.3 HERBS: 1. Pain, 2. Sleep, 3. Fatigue...

functional medicine doc, holistic medicine doc, alternative medicine doc, ‘environmental doc’…, some half-conventional docs etc., alternative practitioner

E.3.1 Pain

Arnica as oil or complex cream (‘Traumeel’) for pain in muscles and tendons (‘joints’)
Celafen cream (with Celadrin), cf. wp.
Rhus toxicodendron for (rheumatic) pain
Willow bark: pain (developed to aspirin)

E.3.2 Sleep (Anxiety, Restlessness

Ashwagandha
Hops
Passiflora = passion flower
Valeriana

E.3.3 Fatigue etc.

Golden root (depression, fatigue, BP)
Turmeric, raw peeled: fatigue (Curcumin)

E.3.4 TCM herbs as hot teas.

E.3.5 Homeopathy (Hahnemann), incl. Bach flower remedies, Schüßler/Schuessler salts (placebo or more?)



Version 2021-08-11 = 11th August

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Alphabetical list of treatments (with references to the systematic treatments list)

Alphabetical list of treatments
Key, e.g. T:E.3.1 = T: = Treatment list, E. = Biochemical, 3. = Herbs, 3.1 = for Pain
  • C:A-E = Cause/Trigger list A-E, e.g. → A.1 = CSS, or → D.1 = Illness as trigger of long-term flares.
  • S:1-19 = Symptom list, groups 1-19, e.g. → S.1 = Pain Symptoms.
  • T:A1.-E.3.5 Treatment list, groups A-E, subgroups, e.g. → T:A.1 = Pacing, or → T:E.3.1 = Pain Herbs
  • ’ = the words before an apostrophe ’ constitute a brand name followed by the name of the medication if it is one, but by nothing if it is not, e.g. <Advil’ Ibuprofen> means Advil is a brand name of Ibuprofen, while <Alpha-Stim’ CES T:B.6> means it is not a drug, but something abbreviated by CES, which is not deciphered there to save space, but you can look for it under that first letter, i.e. CES = cranial…

Numerical

5-Hydroxytryptophan (5-HTP) T:E.2.1

A

Acuball, for muscles & joints, e.g. for TMJ T:B.8.1
Acumat’ Acupressure mat T:B.8.1
Acupressure (therapist) T:B.3
Acupressure devices T:B.8.1
Acupressure mat (‘Acumat’) T:B.8.1
Acupressure points / palpation points (self help, see devices) T:B.3
Acupuncture T:B.3
Advil’ Ibuprofen T:E.1.1
AIP diet T:C.1.18
Air room T:D.1.1
Aleve’ Naproxen T:E.1.1
Alexander Technique T:A.4
allergologist T:C
Alpha-Stim’ CES T:B.6
Alprazolam (‘Xanax’) T:E.1.4
alternating hot/cold baths T:B.5.1.1
alternating hot/cold showers T:B.5.1.1
alternative health practicioner T:E.2 T:E.3
alternative medicine doc T:E.2 T:E.3
alternative practitioner T:C T:E.2 T:E.3
Ambien’ Zolpidem T:E.1.4
amitriptyline (‘Endep’) T:E.1.3
Anti-convulsant: GABA-derivates T:E.1.1
Antidepressants T:E.1.2
Anvifen’ phenibut T:E.1.1
Anxiety therapy T:A.3
Aqua jogging T:B.1.2
Arm exercises T:B.1.1
Arms up T:B.9
Arnica as oil or complex cream T:E.3.1
Aromatherapy T:C.2
Ashwagandha T:E.3.2
Aspirin T:E.1.1
Autogenous/autogenic training T:A.4
Autoimmune protocol T:C.1.18
Avinza’ Morphine T:E.1.1

B

Bach flower remedies T:E.3.5
Back exercises T:B.1.1
baclofen (‘Lioresal’) T:E.1.1
bag of frozen peas T:B.5.2.3
Barbiturates T:E.1.4
BCG vaccine T:E.1.5
Benzodiazepines T:E.1.4
Bicycle T:D.2.3
Bike T:B.10
BIOLOGICAL (1. Diets, 2. essential oils, 3. oxygen/ozone): T:C
Bioresonance diagnosis/therapy) T:B.6
blanket change T:D.1.2
blanket weighted blanket or thicker continental quilt T:D.1.2
blankets T:B.5.1.4
Body part exercises T:B.1.1
Body psychotherapy (T:B.1 & T:B.2) T:A.7
Body Psychotherapy T:B.1.2
Body Realignment by Jan Trewartha T:B.2
Bowen Technique T:B.2
Brain magnetic stimulation T:B.6
Breath T:B.4
Breathwork respiration techniques T:B.11
Brufen’ Ibuprofen T:E.1.1

C

Calcium T:E.2.2
Calming music T:A.4
Calming nature sounds T:A.4
candida diet T:C.1.13
Cannabinoids T:E.1.1
canola hand baths, cold or hot T:B.5.2.1
carb, low, diet T:C.1.10
CBD without THC, e.g. as CBD oil T:E.1.1
CBT T:A.3
Celadrin T:E.3.1
Celafen cream T:E.3.1
Celecoxib T:E.1.1
Celexa’ Citalopram T:E.1.2
CES T:B.6
Chair cushion to go (restaurant, bench) T:D.2.2
chair yoga T:B.1.2
Chairs foldable to go: esp. camp chair (light) T:D2.2
Changing positions regularly T:B.9
cherry cushion T:B.5.2.3
Citalopram (‘Celexa’…) T:E.1.2
Clonazepam (‘Klonopin’) T:E.1.4
clothes added T:D.2.1
clothes layered onion-like T:D.2.1
CNS depressants T:E.1.4
Co-Codamol = Codeine / paracetamol (‘Emtec’, ‘Zapain’) T:E.1.1
Co-Codaprin = aspirin/codeine T:E.1.1
Co-Dydramol = Dihydrocodeine (dihydrocodeine tartrate) / paracetamol T:E.1.1
Co-Enzyme Q10 = ubiquinone-10 T:E.2.5
Cognitive Behavioural Therapy T:A.3
Cognitive Processing Therapy T:A.3
Cold / Heat (sometimes moist) T:B.5
cold barrel T:B.5.1.2
cold chamber T:B.5.1.2
Cold pads T:B.5.2.3
Cold protection T:D.2.1
cold sauna T:B.5.1.2
Cold showering (Wim Hof) T:B.5.1.1
Combinations of pains meds T:E.1.1
Connective tissue massage T:B.2
counselling T:A.3
counsellor T:A.2 T:D
Counterstrain T:B.2
COX-2-inhibitors T:E.1.1
CPT T:A.3
Cranial electrotherapy stimulation (CES, e.g. ‘Alpha-Stim’) T:B.6
craniosacral therapy = CST T:B.2
CST T:B.2
Cupping T:B.8
cushion, small or hard small spelt cushion, or folded towel under hunchback T:D.1.2
Cycling, bike T:B.10

D

D-Ribose T:E.3.2.8
dairy free (but perhaps meat) T:C.1.11
dairy free plus grain free T:C.1.9
Deep Breathing exercise T:A.4
depression therapy T:A.3
Dextromethorphan (DXM) T:E.1.1
Dextropropoxyphene T:E.1.1
Diazepam (‘Valium’) T:E.1.4
Diclofenac (‘Voltaren’) T:E.1.1
Diets T:C.1
Dolcontin’ Morphine T:E.1.1
Dry needling T:B.2

E

ear reflexology T:B.2
Ear-acupressure (Penzel) T:B.3
Ear-acupuncture T:B.3
Effexor’ Venlafaxine T:E.1.1
Electroacupuncture T:B.6
Electrotherapy T:B.6
elimination diet T:C.1.23
Embeda CR 20-0.8 T:E.1.1
empathetic doctor T:A.2 T:D
Emtec’ Co-Codamol = Codeine / paracetamol T:E.1.1
Endep’ amitriptyline T:E.1.3
Energy healing (New Age) T:B.11
Energy roller T:B.8.1
environmental doc’ T:E.2 T:E.3
Epsom salt-baths = magnesium sulfate cf. warm baths (T:B.5) T:E.2.2
Essential Oils T:C.2
Estazolam (‘Prosom’)‌ T:E.1.4
Eszopiclone (‘Lunesta‌’) T:E.1.4
Etoricoxib T:E.1.1

F

family T:A.2 T:D and more
fasting T:C.1.27
Feet up = legs up T:B.9
Feldenkrais Method T:B.1.2
Fenibut’ phenibut T:E.1.1
Filnarine’ Morphine T:E.1.1
flaxseed oil T:E.2.6
Fluoxetine (‘Prozac’, ‘Sarafem’) T:E.1.2
Foam roller T:B.8
Foam rolling = MFR T:B.2
FODMAP, low, diet T:C.1.12
fog help T:A.6
foot reflexology T:B.2
Foot roller (“krupa chakra”) T:B.8.1
Footwear change T:B.8
forums T:A.2 T:C T:D
friends T:A.2 T:D and more
fructose/fructans free T:C.1.2
functional medicine doc T:B T:E.2 T:E.3

G

GABA = Gamma-Aminobutyric Acid T:E.2.1
GABA-derivates T:E.1.1
gabapentin (‘Neurontin’)
gel pads T:B.5.2.3
Gestalt therapy T:A.3
Glutamic acid T:E.2.1
Glutamine T:E.2.1
Glutathione T:E.2.1
gluten free T:C.1.3
Glycine T:E.2.1
Golden root T:E.3.4
grain cushion T:B.5.2.3
grain free T:C.1.4
Guaifenesin protocol T:E.1.5
Gum shield T:B.8

H

Hakomi Method T:B.1.2
Halcion‌’ Triazolam T:E.1.4
Hand grain baths T:B.5.2.1
Hands exercises T:B.1.1
Hatha“ yoga T:B.1.2
Hay diet T:C.1.24
HBOT = hyperbaric oxygen therapy T:C.3
healthy diet T:C.1.28
heat chamber T:B.5.1.2
heat pads T:B.5.2.3
heated mattress pad T:B.5.1.3
Heating T:D.1.3
helpdesk T:A.3
histamine, low, diet T:C.1.14
holistic medicine doc T:B T:E.2 T:E.3
Homeopathy (Hahnemann) T:E.3.5
Hops T:E.3.2
hot water bottle T:B.5.2.3
Hyaluronic acid injections (hyaluronan) T:E.1.1
hypnotics T:E.1.4

I

Ibuprofen (‘Advil’, ‘Brufen’, ‘Motrin’, ‘Nurofen’…) T:E.1.1
ice baths (Wim Hof) T:B.5.1.1
ice packs T:B.5.2.3
Imitrex’ Sumatriptan T:E.1.1
Imovane’ Zopiclone T:E.1.4
Insoles change T:B.8
insoles, thick & warm T:D.2.1

J

Jacobsen = PMR T:A.4
Jaw exercises T:B.1.1
Jones Technik T:B.2
Jung T:B.1.2

K

Kadian’ Morphine T:E.1.1
Ketamine T:E.1.1
Keto diet = ketogenic diet T:C.1.11
Ketobemidone T:E.1.1
Kinesio tape/taping T:B.8
Klonopin’ Clonazepam T:E.1.4
Knitting, crocheting etc. T:A.4
krupa chakra T:B.8.1
Kuklinski Protocol T:E.2.7

L

lambskin T:D.1.2
Lavender T:C.2
Leg exercises T:B.1.1
Levine, Peter T:A. T:B.1.2
Levorphanol T:E.1.1
Lidocaine infusions (‘Xylocaine) T:E.1.1
Lidocaine injections, “neural therapy” (Huneke) T:E.1.1
Light: blackout curtains or blinds, eyemask T:D.1.4
Lioresal’ baclofen T:E.1.1
Local anaesthetic T:E.1.1
Longjohns T:D.2.1
low carb diet T:C.1.10
Low Dose Opioid Antagonists T:E.1.1
low FODMAP diet T:C.1.12
low histamine diet T:C.1.14
low oxalate diet T:C.1.15
low salicylate diet T:C.1.16
Low-Dose Naltrexone, LDN T:E.1.1
Luminal‌’ Phenobarbital T:E.1.4
Lunesta‌’ Eszopiclone T:E.1.4
Lying down; finding new lying positions (pillows etc.) T:B.9
Lyrica’ pregabalin T:E.1.1

M

Magnesium (types) T:E.2.2
Magnesium bisglycinate T:E.2.2
Magnesium glycinate T:E.2.2
Magnesium malate T:E.2.2
Magnesium taurate T:E.2.2
Manual / Massages and Bodywork T:B.2
Manual therapy = manipulation T:B.2
mattress pad, heated T:B.5.1.3 T:D.1.2
mattress T:D.1.2
Mebaral’ Mephobarbital T:E.1.4
Mechanical devices T:B.8
Medical Cannabis = MMJ T:E.1.1
Medical Marijuana = MMJ T:E.1.1
Meditation T:A.4
Mediterranean diet T:C.1.21
Melatonin T:E.2.4
Meloxicam (‘Mobic’…) T:E.1.1
Memes T:A.2
mental hygiene T:A.2
Mephobarbital (‘Mebaral’) T:E.1.4
Meridian system (Asian): Acupuncture, acupressure T:B.3
Metamizole (‘Novalgin’) T:E.1.1
Methadone T:E.1.1
Methoxetamine) (MXE) T:E.1.1
MFR T:B.2
Microcurrent unit T:B.6
Milnacipran (‘Ixel’, ‘Savella’, ‘Dalcipran’, ‘Toledomin’) T:E.1.1
MIND T:A
mirogabalin (‘Tarlige’) T:E.1.1
MMJ = Medical Marijuana T:E.1.1
Mobic’ Meloxicam T:E.1.1
Morphagesic’ Morphine T:E.1.1
Morphine T:E.1.1
Morphine bomb’: essential oils majoram, lemongrass, frankincense T:C.2
Motrin’ Ibuprofen T:E.1.1
Mouth guard T:B.8
MS Contin’ Morphine T:E.1.1
MST Continus’ Morphine T:E.1.1
MTrPs T:B.2
mudbaths T:B.5.1.1
MXE T:E.1.1
MXL’ Morphine T:E.1.1
Myofascial release MFR T:B.2
Myofascial trigger point massage = MTrPs, cf. PRT T:B.2

N

N-Acetyl Cysteine (NAC) T:E.2.1
NAC T:E.2.1
Naproxen (‘Aleve’) T:E.1.1
Neck exercises T:B.1.1
Nembutal’ Pentobarbital sodium T:E.1.4
night clothes change T:D.1.2
nightshade free diet T:C.1.15
Nitrous oxide T:E.1.1
NMDA receptor antagonist and Opioids at the same time T:E.1.1
NMDA receptor antagonist T:E.1.1
Noise: ear plugs - many different types, noise cancelling earphones, talk with neighbours T:D.1.5
Non-Benzodiazepine Sedative Hypnotics T:E.1.4
Non-touch exercises (pseudo-scientific) T:B.11
Noofen’ phenibut T:E.1.1
nortryptyline (‘Pamelor’) T:E.1.3
Nose strips for better breathing, more oxygen (cf. mechanical devices) T:C.3
Nose strips T:B.8
not-to-do-list T:A.1
Novalgin’ Metamizole T:E.1.1
NSAIDs (Nonsteroidal anti-inflammatory drugs), incl. CO2-inh. T:E.1.1
Nurofen’ Ibuprofen T:E.1.1
nutritionist T:C T:E.2 T:E.3

O

Oil pulling T:E.2.6
Omega 3 T:E.2.6
online resources T:A.2
Opioids, incl. Opiates (directly derived von opium) T:E.1.1
Oramorph’ Morphine T:E.1.1
organic foods T:C.1.25
orthomecular medicine doc T:E.2 T:E.3
Osteopathy T:B.2
outreach clinic T:A.2
oxalate, low, diet T:C.1.15
Oxygen T:C.3
oxygen-autohemotherapy (ozone/oxygen-injections) T:C.3
ozone-autohemotherapy (ozone/oxygen-injections) T:C.3

P

Pacing: Stopping in time, resting, fatigue T:A.1
Painkiller Combinations T:E.1.1
paleo diet T:C.1.17
Pamelor’ nortryptyline T:E.1.3
Paracetamol = acetaminophen (‘Tylenol’) T:E.1.1
parietal therapy T:B.2
partner T:A.2 T:D
Parts of the body hot or cold T:B.5.2
Passiflora = passion flower T:E.3.2
pastor T:A.3
pegan T:C.1.22
Pentobarbital sodium (‘Nembutal’)‌ T:E.1.4
Penzel T:B.3
personal support T:A.2 T:C
Peter A. Levine T:B.1.2
Pethidine T:E.1.1
Phencyclidine (PCP) T:E.1.1
phenibut (‘Anvifen’, ‘Fenibut’, ‘Noofen) T:E.1.1
Phenobarbital (‘Luminal‌’) T:E.1.4
PHYSICAL T:B
Physical therapy exercises T:B.1
Pilates T:B.1.2
pillow(s), pillow-wedge T:D.1.2
plant paradox T:C.1.19
Positional Release Technik PRT T:B.2
Postural Integration T:B.2
Potassium T:E.2.2
Power mat (pyramid mat) T:B.8.1
Pranayama yoga breathing exercises T:B.4
pregabalin (‘Lyrica’)
Progesterone T:E.2.4
Progressive muscle relaxation (Jacobsen T:A.4
Prosom’) Estazolam T:E.1.4
Prozac’ Fluoxetine T:E.1.2
PRT T:B.2
psychiatrist T:A and more
psychoanalysis T:A.3
Psychohygiene T:A.2
psychologist T:A.3
psychotherapist T:A.3
psychotherapy T:A.3
PTSD T:A.3
pyramid mat T:B.8.1

Q

Qi Gong / Qigong T:B.1.2

R

Rain legs" T:D.2.1
Rain protection: “Rain legs” - plastic thigh shield for cycling T:D.2.1
Reading T:A.4
Reflexology
Reich T:B.1.2
Reiki T:B.11
Relaxation techniques T:A.4
Reminders (for brain fog) T:A.6
restorative yoga T:B.1.2
Rhus toxicodendron T:E.3.1
Ribose D-Ribose T:E.3.2.8
rice hand baths, cold or hot T:B.5.2.1
Rolfing T:B.2

S

salicylate, low, diet T:C.1.16
Sarafem’ Fluoxetine T:E.1.2
sauna T:B.5.1.5
Scar and Bonework T:B.2
Schuessler/Schüßler salts T:E.3.5
sedatives T:E.1.4
Selene T:E.2.2
Self-hypnosis T:A.4
self-myofascial release MFR T:B.2
senior yoga T:B.1.2
Serrapeptase T:E.2.3
Sevredol’ Morphine T:E.1.1
Sharon Wheeler T:B.2
Shiatsu T:B.2
Sleep hygiene T:A.5
SNRI (Serotonin–norepinephrine reuptake inhibitors) T:E.1.1
socks added T:D.2.1
soft topper on mattress T:D.1.2
Somatic experiencing T:B.1.2
Sonata’ Zaleplon T:E.1.4
spelt cushion T:B.5.2.3
spelt hand baths, cold or hot T:B.5.2.1
Spine roller T:B.8.1
Sports T:B.10
SSRIs, selective serotonin reuptake inhibitors T:E.1.2
Standing working station (bar stool, bar table) T:B.9
Stretching T:B.1.2
sugar free T:C.1.6
Sumatriptan (‘Imitrex’, migraines) T:E.1.1
Sun protection: amount, shielded T:D.2.1
Sun T:A.4 T:B.5.1.6
support groups T:A.2 T:C
Swimming T:B.10
Swiss pine T:C.2

T

Tai Chi T:B.1.2
Tarlige’ mirogabalin T:E.1.1
TCM doctor T:B
TCM herbs as hot teas T:E.3.4
tDCS T:B.6
Teishein needle for percussion pressure T:B.8.1
Temperature tolerance stimulating with acupressure or acupuncture T:B.5.1.7
TENS pen T:B.6
TENS unit (pads) T:B.6
Theanine T:E.2.1
Therapeutic touch (non-contact therapeutic touch, NCTT) T:B.11
therapy T:A.3
Tilidine T:E.1.1
TMS T:B.6
Tooth guard T:B.8
Topical/localized cryotherapy: = Partial body cryotherapy = PBC T:B.5.2.2
Traction T:B.8
Trager approach T:B.2
Tramadol (‘Ultram’… ) T:E.1.1
tranquilizers T:E.1.4
transcranial direct current stimulation (tDCS) T:B.6
Transcranial magnetic stimulation (TMS) T:B.6
Trauma therapy T:A.3
Treatment list T:
Triazolam (‘Halcion‌’) T:E.1.4
tricylic antidepressants T:E.1.3
trigger point dry needling T:B.2
Tryptophan (L-Tryptophan) T:E.2.1
Turmeric, raw peeled: fatigue (Curcumin) T:E.3.3
Twist-Stretching T:B.1.2
Tyrosine T:E.2.1

U

Ultram’ Tramadol T:E.1.1

V

Valeriana T:E.3.2
Valium’ Diazepam T:E.1.4
vegan (no dairy, no meat etc.) T:C.1.7
vegetarian (no meat etc., but dairy) T:C.1.8
Venlafaxine (‘Effexor’) T:E.1.1
virgin diet T:C.1.20
visceral therapy T:B.2
Vitamin B1 T:E.2.5
Vitamin B12 T:E.2.5
Vitamin B2 T:E.2.5
Vitamin B3 T:E.2.5
Vitamin B6 T:E.2.5
Vitamin C (protect) T:E.2.5
Vitamin D3 T:E.2.5
Vitamin E: 8 types T:E.2.5
Voltaren’ Diclofenac T:E.1.1

W

Walker/rollator T:D.2.3
Walks T:B.10
warm baths, e.g. with magnesium = Epsom salts T:B.5.1.1
warm showers T:B.5.1.1
Water therapy, hydrotherapy moving in certain ways in water (e.g. “aquajogging”, “aquafit” "aqua therapy“ or using hot or cold water etc. (cf. T:B.4) T:B.7
Weather protection T:D.2.2
web pages T:A.2 T:D
Weight training T:B.10
wheat cushion T:B.5.2.3
wheat hand baths, cold or hot T:B.5.2.1
Whole body cryotherapy T:B.5.1.2
whole foods T:C.1.26
Willow bark: pain (developed to aspirin) T:E.3.1
Wim Hof’s breathing-exercise T:B.4
Wind protection: Hoodie, windbreaker/windcheater T:D.2.1
Wind protection: windbreak, shelterbelt, shielded, blanket on balcony. T:D.2.1
Workout T:B.10

X

Xanax’ Alprazolam T:E.1.4

Y

Yin yoga stretches T:B.1.2
Yoga breathing exercises T:B.4
Yoga Nidra T:B.1.2
Yoga T:B.1.2

Z

Zaleplon (‘Sonata’) T:E.1.4
Zapain’ Co-Codamol = Codeine / paracetamol T:E.1.1
Zinc T:E.2.2
Zolpidem (‘Ambien’) T:E.1.4
Zomorph’ Morphine T:E.1.1
Zopiclone (‘Imovane’ T:E.1.4


ToDo: Shall I re-name the whole thread Fibromyalgia (Cross-)References? (Once I've started those). Next: Add the Cause & the Symptom list once I feel sure this is the best possible format for looking things up.

Only 12689 characters, max. in one post is 32000. Corrections: 12422. Adding brand names: 13637 i.e. 1215 characters more. But I’ll still be able to get the other 2 lists in here too.

Version 2021-08-11 = August 11th

My triggers, my symptoms, my treatments, my docs (JayCS):

A. My "causes"/triggers

A. Theories: :
x: CSS, genetic predisposition, neuroendocrine,
:question: chronic pain,
:white_check_mark:(:question:) Autoimmune/cytokines, ATP/mitochondria. Sleep problems/disorder. Muscle tone.
B. Biomarkers: Praps cytokines as cold showering & cryotherapy help. Muscle pressure as muscle tone is improved by GABA? Gut (IBSD)?? (But can’t feel a connection.)
C. Starting points: Possibly swine flu 2011.
D. Long-term flares: I am in one long-term flare since about Nov 2019. What might have caused it is … stress/anxiety, pain (back, gut, nerves, skin), overexertion a lot of my life, actually until about the start of the FMS, where I’d got all these down pretty perfectly.
E. Short-term flares: Bad sleep, overdoing it/overexertion, willingly or unknowingly.

B. My symptoms (stub, rest coming up)
Lungs: Air hungriness -> acupressure

I felt air hungry for months, as if I cd never breathe in enough. Also When doing something with a lot of energy I have to pant much more suddenly harder than I used to. When cycling that may be normal, but not when using my arms for 1-2 minutes or after climbing 20 steps in normal or slow speed when in a flare… My ‘felt theories’ are that it is fibro-related due to lack of oxygen in the cells or sudden overexertion due to muscle etc. & pain problems.
My acupressurist got the air hunger down with one certain treatment. She pinpoints the overexertion-panting regularly, using lung acupressure points on ear and body as well as working on my chest.

IBS

rectum burning irritation: Tomatoes.

C. My treatments 1. Helps, 2. Harmed, 3. Neither, to be updated
C.1 Helps me, in order of importance:

Acupressure 2x2h/wk
GABA very helpful since 2021-04, used together with passionflower, Magnesium malate, Magnesium bis)glycinate, glutamine.
Whole Body Cryotherapy: Cold Chamber/Barrel (-120°C, now -150°C (-240°F) for 3 mins before acupressure
Cold showers (inspired by Wim Hof) - helps sleep, reduces pains and Ache

Osteopathy
Back exercises (“yoga“)
Breathing/breath-holding exercise (Wim Hof)
Wim Hof Method, WHM

Connective tissue massage
Autogenous training
Hand exercises
Aqua jogging perhaps a bit.

C.2 Harmed me:

Almost all pain meds I tried:
Cox-2-inhibitors: Celecoxib, Etoricoxib: Severe skin rashes
Opioids: Tilidine: zombified and severe focal seizures
Metamizole (‘Novalgin’): skin rashes

Acupuncture: hurt severely when the needles were in and afterwards
Neural therapy
Hyaluronic acid injections in the lumbar spine - ‘sunburn’ in face, excrutiaing pain in spine
Nose strips - allergy if left on nose on too many hours
Stretching - pain, nausea and cramps if longer than 30’’
Cupping: hurt skin
Electrotherapy - focal seizures
Yin yoga: hurt severely after a short time of stretching
Physical therapy exercises: hurt after short time
Manual therapy: hurt
Manipulation: hurt
Traction devices: hurt, uncomfortable
Hand heat & cold baths in canola seed over 5’: severe circulation problems
Qi Gong: pain, esp. in arms.
Melatonin 2mg extended release and 1mg (halved): zombified
CBD oil 10% 1 drop: zombified
ashwagandha: stomach & gut

C.3 Didn't help me:

Diclofenac
Willow bark
Glutamic acid
Arnica
Rhus toxicodendron
golden root
Magnesium
Calcium
Valeriana
Passiflora
(L-)tryptophan: gut if pills
5 HTP
progesterone
lavender (nice for sleep tho)
Swiss pine (nice for sleep tho)
bioresonance therapy,
gluten free diet
low carb diet
psychotherapy (nice tho, when I’d gone back to a suitable one)
Vitamins & minerals: vitamin b12 injections, potassium, zinc, selene, vitamins B1 + B2, C, E, flaxseed oil, Q10)
amitriptyline: Helped getting back to sleep for a few months, but too harmful (8 side effects).
ozone-autohemotherapy (ozone-injections)
oxygen-autohemotherapy (oxygen-injections)
Heavier blanket (haven’t tried a real weighted one yet, but seems to irritate)
Insoles, special…(?)

D. My docs, 46+..., to be completed

GP 1
GP 2
Rheum 1
Radiologist 1
Gastroenterologist 1
Neurosurgeon
Neurologist 1
Neurologist 2
Endocrinologist
Rehabilitation doc/orthopedist 1
Psychiatrist 1
Psychiatrist & neurologist Sleep lab 2
Psychiatrist, sleep lab 3
Rheumatologist 2 (Fibromyalgia diagnosis)
ENT 1
Alternative practitioner
Clinic examination, 1 doc: Neurologist/Psychiatrist/Pain doc 1 (Orthopedist/Manual therapy)
Orthopedist 2
Clinic examinations, 3 docs: Pain doc 2, orthopedist 3, psychologist 1.
Pain doc 3, 4, 5, 6
Cardiologist 1
Angiologist
Lipidologist
Allergologist
Centre for rare diseases - group of docs, neurologist 3
ENT 2 & 3
Dermatologist 1
Urologist
Cardiologist 2
Psychologist 1 (when?)
Psychologist 2 (when?)
Rheumatologists 3-6, Psychologist 3
Dermatologist 2
Endocrinologist 2
Nephrologist
Public health officer
Psychologist 4

E. My diagnoses (to be translated & re-arranged), 27+...

Primary combined hyperlipidemia
Arterial Hypertonia
Carotisatheromatosis
Primary Raynaud-Syndrome
Varicose veins,
Chronic Venous Insufficiency

WS-Syndrom (b.w.), 1981
Focal Seizures
Renal cycst (harmless)
Tumor L1
Spinal syndrome

  • Beckenschiefstand
  • LWS-Syndrom
  • LWS-Osteochondrose
  • deg. LWS mit Segmentlockerung
  • Hyperlordose
  • deg. obere HWS
  • Hyperkyphose
  • Facettensyndrom
    Gelenke: Polyarthralgie, „2020“ (2010)

Allergien (nochmal allergologische Abklärung 6.7.2020ff), 1982 Nahrungsmittelunverträglichkeiten
Hausstauballergie
Vorform von Neurodermitis-Vorform Raumforderung L1: Vermutlich Neurinom, ohne Wachstum Apr20, Zufallsbefund Okt19. HNO: Septumdeviation, Nasenmuschelhyperplasie, 2020 (2010)
Psychisch: V.a. Erschöpfungsdepression, 2020
Angiologisch
Dermatologisch
Zentrum für selten Erkrankungen am MHH 13.7.ff.,

  • Orangene Flecken an Unterschenkeln & Füßen mit Hautunebenheiten, 1990
  • Kalte Füße (und Hände), blau nach Hochdrücken, 2016
  • Lipom (?) linke Flanke Überschneidungen mit Fibromyalgie? Feb16, bes. Aug19

Urologisch, 20.7.: (Muskuläre) Schmerzen vorm Wasserlassen,
Neurologisch, 3.8.: Schmerzen im Gesicht (Trigeminusneuralgie wohl)

F. Physiotherapists 15 for fibro (about 10 before that for back)

Gym 1-3
Osteopath
Cryotherapist → acupressurist
Clinic: about 10 incl. aquajogging/exercising (cryotherapists), connective tissue massage, electrotherapist, 2(-4) hand exercising & hand baths, osteopath, traction, substitute: leg work, tai chi therapist/progressive muscle relaxation.


Version 2021-08-11 = August 11th

Studies list

80+ published studies on fibro are registered on pubmed per month…! :upside_down_face:

I just thought I’d look if there’s a new study or two on pubmed: <fibromyalgia 2021> brings up 394 results. Dud, I thought. Scanned thru them all. Not dud! A few are from 2020. That’s 100 studies per month! Most of them center on fibro, all of them relevant in one way or another (pain, duloxetine etc.). Update July: Gone down a little bit to 80+.

Examples

Symptoms
Age differences: young - more anxiety; middle - more pain & co-morbidities, old - “better self-report cognitive function” Comorbid Conditions, Mental Health and Cognitive Functions in Adults with Fibromyalgia - PubMed
Laziness-prejudice "Everyone thinks I am just lazy": Legitimacy narratives of Americans suffering from fibromyalgia - PubMed
Personality is irrelevant Personality and psychopathology heterogeneity in MMPI-2 and health-related features in fibromyalgia patients - PubMed
PsA Fibromyalgia in patients with psoriatic arthritis: Relationship with enthesopathy, sleep, fatigue and quality of life - PubMed
PsA-co-morbidity worsens Fibromyalgia in patients with psoriatic arthritis: Impact on disease activity indices, fatigue and health-related quality of life - PubMed
Stigmatization Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences - PubMed
Women Fibromyalgia in women: somatisation or stress-evoked, sex-dimorphic neuropathic pain? - PubMed

Causes
Salivary Biomarkers Application of Salivary Biomarkers in the Diagnosis of Fibromyalgia - PubMed
SFN Advances in the Management of Small Fiber Neuropathy - PubMed

Treatments
Exercise Effectiveness of Exercise on Fatigue and Sleep Quality in Fibromyalgia: A Systematic Review and Meta-analysis of Randomized Trials - PubMed
Exercises Prescription of exercises for the treatment of chronic pain along the continuum of nociplastic pain: A systematic review with meta-analysis - PubMed
Medical Cannabis can help, types unclear Safety and Efficacy of Medicinal Cannabis in the Treatment of Fibromyalgia: A Systematic Review - PubMed
Mindfulness & CBT help Differential efficacy between cognitive-behavioral therapy and mindfulness-based therapies for chronic pain: Systematic review - PubMed
Neural Therapy Neural therapy for fibromyalgia: Myth or improving quality of life? - PubMed
Pain education [Effectiveness of pain neuroscience education in patients with fibromyalgia: Structured group intervention in Primary Care] - PubMed
Pregabalin Pregabalin - PubMed
Q10 Coenzyme Q10 - PubMed
Therapies don’t help much Association of Therapies With Reduced Pain and Improved Quality of Life in Patients With Fibromyalgia: A Systematic Review and Meta-analysis - PubMed
Walking helps Promoting unsupervised walking in women with fibromyalgia: a randomized controlled trial - PubMed

Version starting 2021-08-11 = 11th August

1 Like

Update/ToDo (Aug 2nd: invisibility, chronicitiy, flares, Aug 11th: renewal, 12th: criteria)

Aug 12th: Added the FIQR 2009 and New Diagnostic Criteria 2010 at the top of the symptoms list, thx to Anit. Symptom tracking, not just pain tracking!
Aug 11th: Just renewed all 6 to be able to continue editing them.
Aug 2nd: Added “0. Invisibility” as symptom and educating and paintracking as treatments - still to improve that, Aug 8th?: Also added Chronicity and Flares there.

1. Cause/Trigger list - pretty comprehensive already
2. Symptom list - re-arranged, pretty comprehensive now (:new: July 17th)
3. Treatment list - In order; but so many notes to put in there…

4. I’ll renew & reap the studies list once I’ve “finished” the main 3.
5. My own triggers, symptoms, treatments, docs, etc. partly stub & update nec.
6. Cross-reference key and alphabetical list of treatments with reference key (:new: July 18th)

:new: 2021-07-15 Re-ordered the symptoms list: 1) Headings by relatedness to FMS, 2) added subheadings and 3) re-assigned many symptoms.

Aim: Renewing our descriptions of our experiences is helpful, but I need it bundled.
Despite the limitations in post size (32000 characters), hyperlinking (possible, but doubles the amount of characters) & editing (new versions nec. every 30 days): I love it here.
:slight_smile:

Archive of update news May/June/July

2021-07-12 Deleted the B-version of the treatment list and completed & improved the first one, not using headers for intertwining. Instead I’ll try to do that by grouping treatments by what they are best for, see how that goes…


2021-06-30? Linkable headings? Decided against it...

Hi there - :wave:: I could do with your quick opinion! :rescue_worker_helmet: :slight_smile: . Which would be better for you to use? Treatment list A or B? Treatment list A hides details with little linkability, whilst linkable (intertwinable) headings in treatment list B allow no hiding, making it harder to navigate/scan. Intertwining would refer a symptom you look up to the most fitting treatments (and those to deepening posts, but that’s always possible). And refer a treatment you look up to applicable symptoms & causes. And any item in an alphabetical list to where it fits systematically in any of the other lists.

2021-06-26 I’ve tried linkable headings now, but it’s not possible to put them inside “hidden details” :roll_eyes: Wow, don’t believe it :exploding_head:, I’ve actually ‘finished’ the treatment list B, i.e. sorted it, taken superfluous links out of it, now I can start adding main links sometime…

2021-06-25 After finding out a week ago :exploding_head: :roll_eyes: :unamused: that characters (i.e. letters etc.) per entry are limited to 32000, which the treatments list is now exceeding, I’ve decided not to split entries into more, but instead to try to reduce characters as much as possible. So I need to put all additional information somewhere else: Easiest is to separate out my own experiences, e.g. onto my profile. Then all external links into seperate threads. Then save on formatting characters… Do you have any other ideas on this?
I’ll be able to start work on all this properly at the end of July. Haven’t even managed to integrate the recent notes I started on June 6th… But still raring to go…
:racehorse:

2021-06-12 added Savella-“one-stop”-info-post to treatments (SNRIs, milnacipran).
Still not getting round to tidying up and sorting in my old lists as much as I’d like to…

2021-06-11 :new: Hyperlinks inside of posts are possible, using “headings” (1-6x#) :bangbang:

How to hyperlink...

This will revolutionize i.e. complete my idea for this database,

because I can now intertwine items by hyperlinking them. I wonder how the hyperlinks work exactly. These are the links to the headings/sections of 2021-06-12, having renamed the first:

Earlier Title JayCS’s Fibro Blog - #379 by JayCS
Later Title JayCS’s Fibro Blog - #379 by JayCS
Sleep JayCS’s Fibro Blog - #379 by JayCS
Activities JayCS’s Fibro Blog - #379 by JayCS
Treatment JayCS’s Fibro Blog - #379 by JayCS
Conclusion: The heading at the top of a post does not work, whether I use 1x or 2x#! Instead of pointing to the beginning of the last post, it points generally to a post 16 days ago, I assume the last loadable one. This is probably, because it isn’t necessary anyway, being at the top of a post. Interesting if you leave that one out whether the first heading later down works.

As Hyperlinks, with heading name repeated vs. without:
Earlier Title [JayCS’s Fibro Blog - #379 by JayCS](https://Earlier Title)
Later Title [JayCS’s Fibro Blog - #379 by JayCS](https://Changed Title)
https://www.livingwithfibro.org/t/jaycs-s-fibro-blog/13307/379#sleep-9h20-up-4x-3h35-left_right_arrow-feeling-90-well-pain-1-of-7-white_check_mark-but-hyperactive-2
Activities https://www.livingwithfibro.org/t/jaycs-s-fibro-blog/13307/379#activities-h-left_right_arrow-3
https://www.livingwithfibro.org/t/jaycs-s-fibro-blog/13307/379#treatment-h-self-4
Conclusion: Same problem with the heading at the top of the post. I mistook URL for text. Corrected for 3-5:
Sleep
Activities
Treatment
Conclusion: Beautiful? Not quite. It looks beautiful, but now again the first (of these 3) links generally to a post 16 days back. So what happens if I put the 1st heading at the end?

Sleep
Activities
Treatment
Earlier Title
Later Title
Conclusion: Now suddenly the first of the 5 links is working like it shd and the last 2 are again not. Was the last test dud? No it wasn’t. It’s the way I arrange the hyperlink. They don’t work if there is no line left before. But that doesn’t quite explain why the renamed first one doesn’t work, because it is 2nd in order. What happens if I change the order back, but leave a line before the 1st in order. And if necessary before the 2nd in order too…:

Earlier Title
Later Title
Sleep
Activities
Treatment
Conclusion: It still doesn’t work. What if I leave out the one at the beginning, which I had then renamed?

Later Title
Sleep
Activities
Treatment
Conclusion: Nope. Continue when time has passed. What if I don’t rename? What if the first one isn’t at the top of the post? What if I use the first one but space it out? Neither works. The 16 days back seems to have 2+ reasons. Can’t change things in the other blog without saving, can’t change things here without saving as I can’t see the hyperlink-signs in the preview.

Later Title

Earlier Title

Updates

Earlier Title
Updates

Conclusion: Spacing out doesn’t work. Updates here does work. Even not spacing out works here. So is it just the renaming?

Corrected for 3-5:
Updates

Even the same text as above with the first heading of a post here works. Putting a line after the text above does not work. Same heading, same surroundings, not renamed.

Can I try renaming here?

Updates
Updates

Fibromyalgia References: Causes, symptoms, treatments (to be intertwined) - #13
Fibromyalgia References: Causes, symptoms, treatments (to be intertwined) - #13

Try to find out what this is:

2021-06-11 :new: Hyperlinks inside of posts are possible, using “headings” (1-6x#) :bangbang:

if 2021-06-12-saturday-testing turn into
JayCS’s Fibro Blog - #379 by JayCS
then

2021-06-11 :new: Hyperlinks inside of posts are possible, using “headings” (1-6x#) :bangbang:

wd be
Fibromyalgia References: Causes, symptoms, treatments (to be intertwined) - #13, using “headings” (1-6x#) :bangbang:

The 4 at the end is like the 13307, which is the thread-number, however I rename the thread. This number is the important bit, the words before it/of the title are re-nameable. But the # is needed too. This is the short version of the hyperlink: JayCS’s Fibro Blog - #374 by JayCS. No it’s not.
These are treble-# links, but only one # is shown, it’d be interesting to check if/how that varies.

Also I’d been planning on using ‘hide details’ on each reference-item. You can’t put a # before or in that tho. So I’d have to hyperlink an item and follow that with the item-details. Also the (many) short hyperlinks wd have to be hidden in the ‘hide details’. For pain meds, I’d put that as the title, then follow it by hidden details with all the various groups and names, each with a hyperlink, but none of these can be put as a title, i.e. cannot be pointed too directly, only to the title, pain meds.
Hmm… Makes me think I shd have another good look around the Discourse-forum…
Oh dear, strange, I’m testing another hyperlink now and it’s not working this time… hmm…
It’s a ###-title which is under a #-title. This just sends me to the thread, which is of course worse than sending to a post.

2021-06-06 / June 6th: Many titbits, esp. treatments, from recent notes I want to get out of the way. Older notes and links’d be more important.
:new: Adding details here of new things I’m adding/filing. Only rough order:

Titbits I'm adding 2021-06-06... not finished yet...

SYMPTOMS: pain caused by Fibromyalgia isn’t a threat (Jemima)
Symptom: Docs that don’t know fibro: Phone around.
Symptoms:
Air hungry.
I felt air hungry for months, as if I cd never breathe in enough. Also When doing something with a lot of energy I have to pant much more suddenly harder than I used to. When cycling that may be normal, but not when using my arms for 1-2 minutes or after climbing 20 steps in normal or slow speed when in a flare… My ‘felt theories’ are that it is fibro-related due to lack of oxygen in the cells or sudden overexertion due to muscle etc. & pain problems.

My acupressurist got the air hunger down with one certain treatment. She pinpoints the overexertion-panting regularly, using lung acupressure points on ear and body as well as working on my chest.
symptom rectum burning irritation

TREATMENTS
MEDS
zopiclone for insomnia very addictive
Co-Dydromol for pain
zapain? for pain
oramorph for pain
Naproxen it is a pain medication that had antiinflammatory properties and can help with pain.
If you meant low dose naltrexone it is a med used to aid in quitting alcohol. At less than 1/10 of the concentration (4.5mg) it has shown to help with fibromyalgia pain in small, non-blinded pilot study.
low dose naltrexone. After taking this for 3 days, I woke up at 3:30am with severe muscle rigidity.

nortryptyline helps with sleep & takes away the morning aches so it becomes more tolerable, less sedative than amitriptyline
theanine for sleep. Fx: GI. 400mg. headache, sleepiness.
THEANINE: Overview, Uses, Side Effects, Precautions, Interactions, Dosing and Reviews
L-Theanine Side Effects & Adverse Reactions (List) - Mental Health Daily
GI, keep low & with meals.
L-Theanine: Dosage, Benefits, and Side Effects

serrapeptase: GI, Haut, Muskelschmerz. WARTEN!
Serrapeptase: 13 Vorteile + optimale Dosierung, Studien, Nebenwirkungen
Apotheke: Nur für 45€, besser klein anfangen. idealo?

Wellbutrin for energy but I feel In a zone.
Does anyone take vyvance for fatique? …

Diets: Mayo clinic is neutral to weak against for diet. There is some relative recent research on gut biome and fibro.
Foods to Avoid with Fibromyalgia
https://creakyjoints.org/about-arthritis/fibromyalgia/fibromyalgia-healthy-living/fibromyalgia-diet/
Diets: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551150/ Lowry et al, 2020:
oxidative status or damage; dysfunction of pro-inflammatory or anti-inflammatory modulation; dysfunction of energy production; or, dysfunction of the neuromodulation within the peripheral or central nervous systems. To recommend any nutritional intervention, will require extensive randomised, controlled, human trials. (And that’s the problem.)

„Peer reviewed“: What does "peer reviewed" mean? - LibAnswers

TREATMENTS
Physio
Body Realignment by Jan Trewartha (incorporates aspects of Fascial Release, Orthobionomy and Positional Release)
Scar and Bonework (Sharon Wheeler).

Physios are better with fascia issues (than osteopaths). Sports physios in particular.

Sexual release/relief.

local support groups (zoom?)

cold: heated socks (cost a lot of money) and heated gloves, electric blankets and hot water bottles.
Bowen therapy
auricular acupuncture
aroma therapy

Restorative Yoga
Revitive Medic machine for exercise - probably not helpful.

costochondritis
cider vinegar(black pepper, turmeric, raw honey ginger) mix drinks every morning
Wheat bag
Heat pad
hot water bottle, Long
Frozen pads
ibuprofen gel
naproxin
rest
Paracetamol and dehydracodine
Instead of
Co codamol
Pregabalin instead if gabepentin
Low dose tramadol
Low dose fentynal
Antidepressant
Naproxan if you need inflammatory

mindfulness
TENS machine

What Is Sleep Hygiene? | Sleep Foundation

Unbewusste Anspannung zu hoch! - unwillkürlich, unfreiwillig.

CBD salve for aching body and medical marijuana thc oil for sleep at night. I mostly sleep reasonably well now compared to years of terrible/no sleep. I also started a Paleo diet 5 years ago which transioned into a nutritional ketogenic diet

Treatment of „Us/others not understanding“:
“it’s very painful, and so complicated that not even specialists understand it.” I love this definition. It is what it feels like most of the time. I think I’ll use this from now on, so thank you.
Laugh Therapy: relaxation, depression, pain
I tried laughing yoga — and what I learned about myself surprised me
Here and Now mindfulness via hiking, dancing, other exercising, playing with pets, knitting crocheting or quilting I swapped social media for meditation — and it turned me into a monster

drugs that people use for Fibromyalgia ie. Tramadol, Codeine, Co-Codamol, Dihydracodeine, Nefopam, are Opioids and you have to wean off them gradually.
Pregablin, and Gabapentin (Anti-Epilectics) also have to be weaned off.
Any Anti-Depressant, Amitriptyline, Nortriptyline, Duloxetine etc. have to be weaned off. All of these drugs are currently used for Fibromyalgia. Nefopam 30mgs X 3times a day, Paracetamol 2 500 mgs X 4 times a day, Amitriptyline 50mgs at night. That works for me, (Greenpeace UIK)
Pain Management course
Ginkgo biloba alert brain fog.
Lots of meds low dose
fentynal patch low dose ,

nortriptalin

Meditators: I saw a BBC program with Michael Mosley the medical presenter/reporter they have and they did this study where they tested the calf strength of 30 odd volunteers, then they split them into two groups. They got one half to do conventional calf exercises and they got the other half to meditate on their calf muscle for 30 minutes a day. They did this for at least a month (I can’t remember how long) then they retested the calf strength in all the volunteers. They found that calf strength in both groups had got better but surprisingly some of the meditators had improved beyond the others in the exercise group. When they scanned the muscles of both groups they found the exercisers had enlarged their main calf muscle and the mediators hadn’t but they instead had grown masses of these tiny connectors that link the muscles to the rest of the body which had made them stronger.

2-3 days Respite from a sting?! https://www.fibromyalgiaforums.org/ community/threads/brief-respite.28586/

2021-06-05 / June 5th: Added Sweating (incl. 6 studies & treatments) to symptoms. Wasn’t on there despite being by far the most common skin problem for FMS!

2021-05-27 / May 27th: Update of ‘causes’ using the list of triggers Sheila_W’s once posted. Rearranged treatments, still lots to rearrange and interlink there too…

2021-05-25 / May 25th: Tidied causes, sorted symptoms better. ToDo: Core symptoms first; introduction. Linking treatments with longer posts. More intertwining.

Hunting & Tracking: symptoms, triggers & treatments - the basics

“How to” :fireworks: track symptoms, :fireworks: hunt triggers, :fireworks: decide and follow thru on (preventing & alleviating) treatments.

Updates:

:arrow_forward: v5 (Oct 10th): Bathing in sadness, resting for a while and then swimming again.

v2-4 (2021-09-19, 10:15): Added lots!...

v4: More on grieving, “fighting” etc. Section on Self-motivating.
v3: More on preventing & alleviating (& healing?) as opposed to suppressing or accepting symptoms & sfx.
Expand ‚blog‘ to a rough overview.
Blog/diary structure:
Sleep comes first, as it is fundamental.
Either rewarding dozing/AuTr or getting up immediately & doing something about the insomnia.
Sleep entries.
Symptoms & their triggers next.
Scaling.
My assumption that I will find a trigger if I look hard enough has been rewarding.
Add how to cope with sfx of anything: dose & times, e.g. tryptophan, encapsulating.
sfx: A brain with pain may be preferable to no pain with no brain. Meaning: It’s harder to pinpoint & alleviate symptoms with a brain dulled by pain killers. Pain killers do not kill pain, they suppress it. Trigger & treatment hunting generally will be able to alleviate pain.
However those of us with less pain tolerance may prefer „less brain“.
Keep ‚killing’ separate.
Med detox. Being sure they are having fx. Not waiting long for things to work.
Coin further phrases.
All treatments can have placebo fx and/or nocebo sfx. Does it matter? Reduce?
How fast should we progress with changing treatments? 3 modes: 2 weeks. 3 months. 1 day.
Contact Mandy, C/TJ, Dooi


The lists of causes/triggers, symptoms & treatments can provide us a bit of orientation.
They can help us even if we don’t change what we do, by changing our mindsets,
e.g. “acceptance”.
But we can normally only improve our symptoms if we apply what we find, to change things.
Some may say they are too old to want to spend time & energy on improving symptoms.


Symptom tracking:

What symptoms (exactly) happen when (exactly)?
Just because a symptom is listed as one of the “200” it may still be something else than fibro.
Just because a symptom is listed under “possibly fibro” doesn’t mean it’s unchangeable fate.
If we are prepared & able to spend time & energy on improving symptoms
each single one is worth looking at and revisiting again and again.
Even if body fatigue and brain fog are robbing time & energy, setting priorities may help bit by bit.
Keeping written record of it, e.g. symptom & treatment diaries can help this, using abbreviations.
If we can’t ourselves, maybe someone can help us - our loved ones or some mentor.
There are ‘pain tracking’ tables which very much need to be adapted, for me they’d need more detail.
Maybe my blog can show roughly how it can be done, esp. now it’s becoming more systematic.
Details on my blog structure and how it would look in table form at the bottom.


Trigger hunting:

What might be the trigger(-s!) of a certain symptom?
Looking hard enough for triggers may be greatly rewarded with progress.
Causes of symptoms can help look for guidance for triggers & treatments in the right place:
It’s good to check thoroughly if there is a cause of a symptom outside/independently of fibro.
The list of hypotheses of (“10”) possible causes of fibro can give a vague idea of treatment types.
E.g. feverishness may feel ‘inflammatory’/AI: cryotherapy and serrapeptase may be things to try.

One very likely mid-term trigger independent of fibro may be the side effects (sfx) of treatments, esp. meds.
In this case the question is if we can adapt/reduce the dose and/or times of taking things, or changing the form, e.g. capsules instead of tablets (or pulverizing & encapsulating them).
A brain with pain may be preferable to no pain with no brain. Meaning: It’s harder to pinpoint & alleviate symptoms with a brain dulled by pain killers. Pain killers do not kill the trigger of pain, they only suppress it. Trigger & treatment hunting generally will be able to alleviate pain by stopping the trigger. However those of us with less pain tolerance may prefer „less brain“. :wink:

We can research some or all triggers, unless we want to stick to the mindset that “it’s all fibro”.
We can’t do everything at the same time. So it needs time. And/or others:
Our time and the time of people who can empathize & help us think;
these may be friends, loved ones or physios during a treatment appointment, even docs;
esp. if we ask specifically and learn to describe & track our symptoms vividly and in detail to do so.

It also helps to focus on a symptom that seems most relevant at the moment, i.e. set priorities.
Either because it may be easy to resolve (e.g. ear plugs, eye masks, clothing, bed clothes).
Or because it is very debilitating and maybe central to other symptoms.
It helps to differentiate and describe very exactly to ourselves and to others what we exactly mean.
(E.g. What exactly do we mean by 'fatigue'? (11? types).
Fatigue’s treatments may vary according to its type: tiredness, no energy, Ache, mental, or brain fog…)
If we have neither time, energy nor helpers, then acceptance etc. is the only way to get a bit of a hold on it at all.
This is always best for the parts of it we can’t deal with at the moment, in extreme cases might be the whole of it…


Treatments

:fireworks: Grieving & self-motivating; :fireworks: deciding & prioritizing; :fireworks: testing; :fireworks: preventing & alleviating.

Motivating ourselves, while and after “grieving” (Bathing in sadness for a while & resting and then swimming again):
Grieving about our condition are “stages” or praps better “types of grief”:
:eight_pointed_black_star: shock/denial, :eight_pointed_black_star: anger (& fear) & blaming (esp. docs & researchers, or ourself), :eight_pointed_black_star: bemoaning, comparing & idealizing the life that seems “gone”, maybe we feel like :eight_pointed_black_star: bargaining, praps like a child; :eight_pointed_black_star: depression; finally hopefully :eight_pointed_black_star: acceptance, letting go, finding a new way of coping, adapting to the new life and making the best of it. (Kübler-Ross; Kast; Spiegel; & Bonanno)
All of these are an important part of coping, so it’s good to let ourselves feel most of them for a time, whatever order, alternating, however strongly.
The faster we adapt, the faster we will get moving - moving to get a life.
Fighting against our condition as an “enemy” may be tougher than self-caring & love for ourself.
Self-motivating depends on having or getting an active attitude.
Our attitude can tend more to pessimistic and :eight_pointed_black_star: state-oriented or to optimistic and :eight_pointed_black_star: action-oriented (Kuhl).
Our starting point depends on our personality development, but studies show we can practice and learn the other.
The serenity prayer (serenity to accept; courage to change; wisdom to distinguish) shows how both help.
To become more action-oriented, if nec., we need to decide to, to associate this positively & repeat both.
We need to love doing it, use “pictures” to convince ourselves, let our hearts follow. Helped by relaxation.
Have faith in it, hope, try. Learn techniques to tolerate the pain and the struggle.
Swing between :eight_pointed_black_star: carrying on and :eight_pointed_black_star: reminding ourselves of the positive goal.
If we are more state-oriented (feel powerless, helpless) we need encouragement & reassurance from others (family, friends, counsellors) to remind us we are not powerless.
Sometimes we need to croak like a frog, but we can fly high like an eagle & change our days.
To stop us from hesitating, becoming vague or giving up, we need to keep in contact with our feelings, learn to self-reassure, use positive fantasies of our goal, split into baby steps, practice patience, learn to control any feelings of rejection and shame.
Know what we want and keep a positive mindset by spending time with nice things.
Not suppressing important negative things like grief.
Positive thinking can help us if we are action-oriented.
If we are state-oriented we may need to criticize/punish ourselves a little bit, e.g. with “bad smileys”.
Fear of failure can help motivate, but only if it’s not too strong: otherwise (learn ways to) self-reassure.
Taking self-responsibility and self-advocacy can lead to self-confidence & success, being able to live with things going wrong or even “mistakes”. I still need to find myself, my own way, tho.
It helps to advocate our new stance publicly.
Deciding and prioritizing:
Which treatment might be the next most successful for a certain symptom in my body?
Don’t forget there are 100s! on my list - have we really seen, appreciated & tried all we can “afford”?
Most of the symptoms & treatments are actually already intertwined in the lists, see below.
We can :eight_pointed_black_star: suppress, :eight_pointed_black_star: alleviate, :eight_pointed_black_star: prevent or praps even :eight_pointed_black_star: heal.
Which of these is my priority? Suppressing makes everything else harder, healing, alleviating & preventing.
Suppressing may be able to heal acute illnesses, but very likely not chronic ones.
Healing may come from alleviating & preventing for/after a while.
For healing good PT is best; for preventing: diet, environment; for alleviating: supps, herbs, PT; for suppressing: meds.
The less we work on alleviating, the more we’d need to work on preventing and vice versa.
Testing:
What effects (fx) and side effects (sfx) might be preventing or alleviating which symptoms?

Preventing means identifying and trying to avoid the trigger of a symptom.
Usually self-treatment, hard to get help for, unless from close people or fellow sufferers. Mainly:

  • food = the various diets: #3 above,
    for :eight_pointed_black_star: general health, :eight_pointed_black_star: general fibro triggers or :eight_pointed_black_star: specifically GI problems, and
  • sleeping & weather conditions/environment = bed, clothes, light, sound, seats: #4 above.
  • Pacing of activities & actions (e.g. poses), incl. rest; adjusting the people & things there. (#1)

Alleviating means trying out all relevant kinds of

  • physiotherapy (#2 above), all paced gently, carefully, starting very short: minutes.
    Many of these are all-encompassing, so may alleviate Ache and pain as well as sleep, energy etc.
    Expert physio (by a listening, knowing, gentle PT) and our self-treatments need to go hand in hand.
    If nec. all youtube physios instead of live experts, i.e. increased self-treatment.
    If we find the right sort of PT it may be the best way of actually healing some parts of our body.
  • meds, supps & herbs (#5 above, already roughly ordered according to symptoms there).
    Too specific intertwining cannot do the amount of fx, sfx and personal differences justice.
    Each of us has to try to find their own way or ask one another for specific ideas.

Both in varying ways/extents using our minds to change how we do things (#1 above).

Killing = suppressing symptoms - usually with meds - means giving up on trying to find the trigger, which has the consequence that our body still has to cope with the trigger, but additionally also with the med which is suppressing it. Doing a complete “med detox” may actually be having a real effect, esp. if we’ve been taking quite a few things for months or years and are no longer sure what they are doing. We need to know how to wean off them: A good general sense of our bodies, the experiences of others incl. docs can help with that.

But we can always try to reduce one of our pills once in a while to see if we are right in assuming they are helping.
All treatments can have placebo fx or nocebo sfx. It’s good to know that placebo or nocebo may happen even if we are aware of them. The question is: Does it matter? If we take 10 things that don’t work and then one does…
How fast should we progress with changing treatments? It depends on the med & our body.
I’d recommend 3 modes: 2 weeks should be enough for most meds, supps, herbs, physio, therapies. For some, like diets, 3 months. For some 1 day may be enough, e.g. strong sfx. Or if we know how to listen to our body well or it reacts very quickly or we have got most things sorted out and know exactly what is happening and why.



Blog/diary/chart structure:

Sleep comes first for me, as it is fundamental.
My older technique (not having alternatives) was rewarding dozing or relaxation (autogenic training) by usually counting it as sleep. Remembering that we often dream that we cannot sleep, but actually are sleeping much more than we think. I often guess the durations afterwards roughly of course.
More recently (having found supps/herbs to help), I get up if I feel awake & do sth. about it, which now usually works, but didn’t use to.
Sleep entries: Time & dosage of supps, copying that over to the supps entry. Times of beginning & end of sleep. Plus waking up, with the minutes I am up. Usually trying to keep it down to 3’, or if I do something like cold showering down to e.g. under 10’: It has to be something strong enough to reverse the effect of staying up longer, which cold showering <1’ usually is for me. Plus (abbreviated using templates) a note of symptoms & treatments (pee, drink, hunger, dry mouth, GI, pains). More self-discipline by writing down the time & durations exactly.
Doing this on paper could mean a chart with a row with the start of a sleep interruption, the symptoms & treatments in columns and a space at the end to describe anything in detail.

Symptoms & their triggers comes 2nd.
For this, even more than with sleep, it’s helpful to scale the intensity.
(I use % for how well I’m feeling, 90% is my “new normal”, and a pain scale of 0-7 - crying or moaning etc.)
I separate overall Ache due to “activities” from single pains due to “actions”, e.g. poses.
That occasionally means doubling some, e.g. talking might cause Ache, but also jaw pain.
One activity, with the duration, can lead to a certain extent of overall Ache to scale.
One action, like sitting, can lead to many single pains, which need to be addressed, so scaled and noted, singly.
If it’s not that nec to scale precisely, it may suffice to use symbols (I use a combination of :white_check_mark::x::face_with_monocle:) and just be more precise when nec. That way I can clearly get a quick impression of all of them, as there will be many.
On paper this could mean a chart with one action per row (3 poses); all relevant body parts (may vary), stiffness, certain activities which may cause a general ache, but also single pains, in my case like walking, cycling & talking), and praps something specific to ourselves, our form of FM and our co-morbidities.

Treatments
Self-treatments: To reward and cheer ourselves on it’s helpful to write down (maybe for others too) the self-treatments we do and how long for.
The minutes, but also smileys for certain goals, regularly adjusted according to what kind of a phase we are in.
Our self-treatments may include “self-discipline”, relaxation, exercises, other physio with cold/heat or electricity etc., researching, thinking/writing, checking (e.g. blood pressure), in my case now filling powder into capsules.
On paper/chart I’m not quite sure which way round rows and columns’d be best, may not matter.
Therapy: Then it’s good to note the therapy appts we go to, whether physio, psycho or docs and how they helped or didn’t.
Pills: Noting every med, supp & herb we take, what dose & what time, whatever it’s for, will help think about the sense of using them. This can be divided up into what we do regularly at the moment, which needs to be adjusted regularly too, what we are adding and what we are planning on doing next: When we research, we may find treatment ideas we’re not quite up to at the moment, or we need to see what’s working for a while, but if we note these and keep them on your radar, plan in time when to try them, get them going (phoning for appts, ordering etc.), put them into a good order.
As said above doses may need to be reduced or split up to improve sfx.
But if something isn’t working visibly, but also has no sfx, increasing the dose may be good (in my case passiflora).

Keep mid- and long-term track
To keep longer term track of what’s been changing it’s helpful to summarize our week and our feelings about it (like my ‘highlights’, sometimes lowlights) and also our months (like my blog summary) so that we don’t have to read everything in detail, unless we are looking for something specific which we hadn’t realized at the time.

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Symptom list

(Edited a little from above, see end.)

  • To pinpoint/describe sensations & (eventually) look up likely treatments, not to diagnose FMS.
  • Every symptom may be due to something else, so get checked if you want to be sure it isn’t.
  • Ordered by relatedness/relevance to FMS (e.g. pain or sleep), which can suggest the order of treatment trials.
  • All FMS-symptoms can be “treated” alone, whether locally or generally.
  • This is trying to be the most helpful symptom list, not necessarily the longest. (But I’ve used and am improving some of the longest, and there are 200+ here at the moment.)
  • Revised Fibromyalgia Impact Questionnaire (FIQR), 2009, Bennett et al
  • New Clinical Fibromyalgia Diagnostic Criteria 2010 (ACR?)

Starting point: 200+ Symptoms of Fibromyalgia (Hard to Believe). What are Yours? - Fibromyalgia Resources from the thread Symptoms lists: 100, 200, full… (“64”)

Docs that still don’t know, acknowledge, understand fibro
(Treatment:) If you doc doesn’t know fibro & doesn’t want to get educated by himself or by brochures (e.g. FMA UK, internet pages) or by you: Phone around, asking at the desk how many fibromites they treat. (Accurate descriptions of symptoms.)

Symptom groups:
0. ‘Invisibility’, Chronicity, Flares. 1. Pain 2. Fatigue, 3. Sleep, 4. Psychological, 5. Neurological, 6. Fibro Fog, 7. Body temperature sensation, 8. Sensitivities, 9. GI/IBS, 10. Vision, 11. Urogenital, 12. Skin, 13. Dryness, 14. Lungs, 15. Heart, Blood vessels (16. Hair, 17. Nails, 18. Mouth, 19. Weight)

  1. ‘Invisibility’, Chronicity, Flares

Docs can’t find anything (scans, bloods) - core symptoms 1-4 below plus diagnosis of exclusion.
Docs often don’t know about, acknowledge or understand it.
People incl. friends & partners can’t see anything, don’t understand, see us smiling: “But you look OK.”
Chronic: Longer than 3 months is the definition for FM.
Flares: Phases where the symptoms get worse than usual, due to Fibromyalgia References: Causes, symptoms, treatments (to be intertwined).

  1. PAIN & stiffness - all over / parts of the body - toe to top
    Rheumatology & pain medicine cannot address causes, only suppress symptoms; acupuncture; nutritional supplements, esp. amino acids.

Remember: “Pain caused by Fibromyalgia isn’t a threat” (‘radical acceptance’).
Possible treatments: Everything, specifically Epsom salt-baths (magnesium sulfate)

1.0.1 All over at the same time

(Treatment: Overstraining something: Twist-stretch: twist limbs, back or neck & hold 10-20’’.)
Allodynia = touching pain, cf. hyperalgesia
Ache (esp. limbs)
Feeling run over by a truck=lorry/car/train/rhino/plane/whatever
Feeling like walking in a lead suit… / like the tin can man
Flu-like feeling: heaviness, Ache, fatigue, more pains, rest need, sleep need, sleep long. With or without fever-feeling, sinuses/runny nose (allergy?), headaches (migraines).
Hyperalgesia = amplified pain, cf. allodynia
Stiffness, morning
Stiffness, all day, after not moving for a while, after overexertion. Cf. stiff person’s/man syndrome (not nec. combined with to pain)
Muscle weakness
Pain moderate to severe
Tender points (≠ trigger points)
Trigger points (≠ tender points)

1.0.2 Certain areas all over, maybe alternating
Specialized physiotherapy, esp. osteopathy, chiropractic, acupressure

“Joint” pain (probably tendons, i.e. tendinomyopathy)***
Muscle cramps (bigger area)
Muscle spasms (smaller area)
Muscle pain
Muscle twitching
Pains alternate, seem to move
Sighing, breathing in, etc. frequently (also fatigue, also psychological)
Tensed muscles, unconsciously
Voodoo doll-poking sensation, random places
Weakness (severe) or paralysis of an arm or leg

1.1. Legs

Feet - Plantar arch or heel pain
Thighs
Restless Leg Syndrome = RLS
Hip
Sciatica-like pain (from back down the legs)

1.2. Torso/Trunk

Back pain:
Disk/Discs Degeneration, DDD = Degenerative Disc/Disk Disease
Lower back pain = SI-joint = sacroilial joint = sacrum and coccyx)
Abdomen/belly
Scoliosis (sideways curve)
Hunchback (kyphosis)
Chest
Chest, mimicking heart attack
Ribs - Inflamed Rib Cartilage = Costochondritis
Breasts, lumpy & tender
Collarbone = clavicula
Neck pain: Epsom salt-baths (magnesium sulfate)

1.3. Arms

Elbow
Weak achy muscles

1.4. Head

Jaw, TMJ syndrome (= temporomandibular joints)
Teeth / tooth / gums
Head - Headache
Scalp Pain (like hair being pulled out)

  1. FATIGUE, slowdown of activity
    Supplements

Activity level significantly decreased
Fatigue from physical exertion, pain, stress etc.: 11 types of fatigue: esp. tiredness, ache, lack of energy, mental; Spoon theory
Sighing, breathing in, etc. frequently (also pain, also psychological)

  1. SLEEP
    Sleep lab psychiatrist, sleep lab neurologist, sleep lab pneumologist, multidisciplinary, supplements.

sleep lab psychiatrist, sleep lab neurologist, sleep lab pneumologist, multi-disciplinary
Alertness/energy best late at night
Sleep/wake schedule altered
Awakening frequently
Falling asleep difficult
Staying asleep difficult
Excessive sleeping = Hypersomnia
Hypersomnia = Excessive sleeping
Narcolepsy / Falling asleep at random and sometimes dangerous moments
Sleep pattern light or broken
Muscle spasms/twitches at night
Sleep disturbances
Teeth grinding
Tossing and turning
Un-refreshing or non-restorative sleep
Vivid or disturbing dreams/nightmares

  1. PSYCHOLOGICAL / MIND / EMOTIONAL
    Psychologist, psychotherapist, empathetic psychiatrist, nutritional supplements.

Doubting it / “Imposter syndrome”
Not accepting it
Overdoing it (dilemma of feeling better & normal during & perhaps for a time directly after it)
Sighing, breathing in, etc. frequently (also fatigue, also pain)

EMOTIONAL, esp. depression (part or consequence), anxiety, incl. PTDS

Depression:
Appetite decreased
Crying frequently / easily
Helpless feeling
Hopeless feeling
Enjoyment, inability to previously enjoyed activities
Mood depressed
Suicidal thoughts / Suicide attempts

Anxiety:
Anxiety or fear when there is no obvious cause
Fear of someone knocking on the door / telephone ringing
Fears, irrational
Panic attacks
Phobias
Self-confidence, lacking; feeling worthless
Social anxiety

Mood:
Awareness of symptoms heightened
Irritability
Mood swings, like anger outbursts, uncontrollable rage, abrupt and/or unpredictable
Overreaction
Personality changes

  1. NEUROLOGICAL
    Neurologist, supplements

Nerves:
Burning nerves
Numbness sensations
Tingling sensations
Tinnitus (ringing in one or both ears)
Trembling, tremor
Wrist: Tendons swell & press on nerves: carpal tunnel syndrome, CTS

Not that close to fibro:
Seizures and Seizure-like episodes aren’t FMS (I have them myself)

  1. “FIBRO FOG”: 1. Sensations, 2. Cognitive, 3. Speech, 4. Balance, 5. Perception, 6. Coordination

Not easy to separate these areas from one another.
Neurologist, opthalmologist (see 10. Vision & 13. Dryness of the eyes), neuro-ophthalmologist, supplements

Fibro-Fog / Brain fog: Delayed reaction to physical activity or stressful events. Appears like but ≠ adult ADHD.

General sensations:

Confusion
Dizziness, e.g. vertigo
Light-headedness
Spaced out feeling

Cognitive / Thinking unclear, difficulties:

Attention/concentration difficult, easily distraction
Decision-making difficult
Distance-judging difficult (when driving, etc.)
Judging difficult
Orientation (Disorientation) (directional or spatial, really or feeling)
Recognizing (routines, left/right, number/word orders)
Remembering (difficulty remembering, short-term or long-term, losing things, forgetting)

Speech:

Expression difficult (words, numbers)
Speech slowed, stuttering, stammering
Understanding difficult (words, numbers)
Word-finding difficulty/using wrong words.

Perception (Seeing, hearing, smelling):

Not seeing what you’re looking at
Smell hallucinations
Sensitivities → there.

Balance:

Balancing difficult
Walking wobbly

Coordination poor:

Bumping into things
Dropping things frequently
Staggering gait
Stumbling, tripping frequently
Walking clumsily

  1. BODY TEMPERATURE SENSATION
    Endocrinology, Acupuncture, Acupressure, TCM.

Cold or hot feeling, or alternating
Flu-feeling, cf. Ache, Allodynia (touch pain), Feverishness, Hyperalgesia (amplified pain)
Hands/feet, poor circulation there: Raynaud Syndrome .
Hot flashes = hot flushes
Sweats → Skin

  1. SENSITIVITIES / INTOLERANCES
    Acupuncture, acupressure, TCM, avoid/alleviate (, allergology).

Alcohol
Allodynia (hypersensitive to touch)
Chemicals in cleaning products, perfumes, etc.
Cold
Foods
Heat
Light sensitivity = photophobia
Noise intolerance
Odors = smells
Sensory overload
Pressure & humidity changes
Sun
Temperature changes
Weather changes
Wind

  1. GASTROINTESTINAL (gut: IBS = Irritable Bowel Syndrome; stomach: hyperacidity or hypoacidity?)
    Gastroenterology, allergology, supplements, avoid/alleviate.

Abdominal cramps
Appetite decreased
Appetite increased
Bloating
Food cravings (e.g. for carbs) (try an “amino acid questionnaire”)
Constipation frequent (e.g. IBS-C)
Diarrhea frequent (e.g. IBS-D)
GERD = Gastroesophageal reflux disease = Reflux
Heartburn
Intestinal gas
Irritable bowel syndrome = IBS
Nausea
Rectum burning irritation (foods?)
Reflux see GERD
Regurgitation
Stomachache
Stomach burning
Vomiting
Weight gain
Weight loss

  1. EYES / VISION poor
    eye specialist, oculist, ophthalmologist

Eye pain
Vision blurry, difficulty switching focus
Vision ability changes, frequent changes in ability to see well
Vision poor at night, e.g. driving

  1. UROGENITAL pain
    Urology, gynecology, supplements.

Bladder pain
Endometriosis
Urination frequent
Impotence / Libido (sex drive) decreased
Irritable bladder, Overactive Bladder (OAB)
Menstrual problems
Pelvic pain
Premenstrual syndrome (PMS) worse
Prostate pain
Urination painful, altho no UTI (= Urinary tract infection)
Vulvodynia

  1. SKIN
    dermatologist

Bruising easily
Eczema/Dermatitis
Itchy/irritable skin
Psoriasis
Rashes
Scalp pain cf. pain: head.
Scarring easily
Skin hot/dry
Sores

Swellings:

Bumps
Edema
Lipoma
Lumps
Lymph nodes swollen, esp. neck & underarms
Swollen feeling

Sensitivity to the sun
Sweating

  1. DRYNESS (Sicca syndrome?)
    Rheumatologist, endocrinologist, ophthalmologist, dermatologist.
    e.g. for eyes: Various therapies, 4 drop types, other things like intense-pulsed light therapy followed by massage of the eyelids, gua sha, omega-3 fatty acids (flaxseed oil, castor oil eyedrops and acupuncture.

Eyes dry (Sjögren’s?) (itchiness, hurting, stinging, burning, scratchy, stringy mucus, light sensitivity, eye redness, foreign-body sensation, contact lense difficulty, nighttime driving difficulty, watery eyes (as response), blurred vision, eye fatigue…
Mouth dry (Sjögren’s?)
Teeth & gum problems
Throat dry (sore, hoarse, speaking, singing, thirst increased),
Stomach dry (hyperacidic)
Gut dry (constipation),
Skin dry

  1. “LUNGS”
    Physiotherapy, acupuncture, acupressure, TCM.

Air hungriness/hunger
Breath short with little or no exertion (esp. using arms above the head)
Breathlessness
Gasping for breath

  1. “CARDIOVASCULAR” (Heart, blood vessels):
    cardiologist, psychologist, relaxation exercises

Blood pressure increased (due to pain?)
Hemorrhoids (piles)
Heart attack-like pain that mimics (costochondritis?)
Heartbeat fluttery
Heartbeat irregular
Heart palpitations
Heartbeat rapid
Pulse loud in ear

  1. HAIR
    dermatologist, gynecologist, endocrinologist, supplements

Hair dull, listless
Hair: heavy and splitting cuticles
Hair: temporary loss

  1. NAILS (praps Psoriatic Arthritis = PsA)
    dermatologist, supplements

Nail beds irritated
Nail ridges pronounced
Nails that curve under

  1. MOUTH cf. 13. Sicca
    dentist

Dental problems
Periodontal (gum) disease
Canker sores, mouth ulcers, e.g. aphthous stomatitis

  1. WEIGHT (see 9. Gastrointestinal)

Weight gain, unexplained,
Weight loss, unexplained

Version starting 2021-10-09 = October 9th

compared to the version 2 months ago I’ve added docs/therapists to consult/diagnose/treat, left out ‘things to do’, integrated “dry eyes” and “flu-feeling” instead of leaving them at the top, as there’s no need to pursue similar in more detail.

Still haven’t got around to completing this lot. My own last additions

I’ve been thinking I’d have to add quite a few of my last supps to above list.
Now I’ve seen almost all are already on it. New are only:

  • NADH I might now add under vitamins (or enzymes??), as it is a B3-coenzyme. For energy (ATP) & post exertional malaise, sfx: overstimulation & jitteriness.
  • ALC is derived from amino acids, so might fit best there.
  • mumijo (shihalit) no one knows what exactly it is… but it seems to improve inflammations, pain & GI-problems.
  • SAMe: amino acid (pain, stiffness, sfx: GI, bladder, dry mouth, sleep)
  • Glycine: like GABA is an inhibitory amino acid (IAA), also like taurine. (However the problem with glycine and taurine for me is that it is not inhibitory/relaxing like GABA, but excitatory, as I found out trying taurine and magnesium glycinate.)

Scanning my notes there’s not much more to add to the treatments than

  • light therapy, various kinds, e.g. LLLT, red light etc.
  • names of recommended books (and docs; Liptan, Davis/White, Edelberg, Seignalet, Berry, Berg, Starlanyl, Rogers, Teitelbaum, Craggs-Hinton, Sarno, Dryland, youtube: Therapy in a Nutshell), praps
  • a few med names I may have missed,
  • ginkgo for alertness/fog,
  • a few specific physio treatment types (Body Realignment by Jan Trewartha, Scar and Bonework by Sharon Wheeler, Bowen therapy, hypnotherapy, auricular acupuncture, aroma therapy, restorative yoga, laugh therapy, laughing yoga, things to take your mind off/or for Here and Now mindfulness) or
  • alternate names or variations of things/devices etc. I’ve already noted (heated socks, cooling blankets),
  • anti-inflammatory herbs (black pepper, cider vinegar, turmeric/curcumin is under E.3.3 fatigue, raw honey, ginger, boswellia ((carteri/sacra & serrata, papyrifera), frankincense)… - but all increase acidity) and
  • CBD/THC/cannabis etc. I can’t find where I’ve put it?

And under Triggers/Causes a few more biomarkers

  • microbiome composition,
  • branched-chained amino acids, BCAA,
  • insulin resistance

I could also put my German versions here, or at least link to them, why not…

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Current table of thread content:

:zero: Hunting & Tracking: symptoms, triggers & treatments - the basics
:one: Cause/Trigger list, clickable, Aug 11th
:two: Symptom list, categorized, clickable, Aug 11th
:two: Symptom list, slightly updated, unclickable, Oct 9th
:three: Treatment list, categorized, clickable, Aug 11th
:three: Treament list, alphabetical, clickable, incl. cross-reference key, Aug 11th
:three: Treatment list, additions (during my delay in finishing it off)

Click for: What's keeping me from spending too much time on these references at the mo is
  • research on sups etc.: SAMe, NAC, NADH, mumijo, ALC, Boswellia, weather as trigger,
  • balancing out & ordering all the 13 supps I’m trying at the moment,
  • still wanting to catch up on listening & writing on all 5 fibro-forums I’m on,
  • slow progress allowing me to do more work, music, activities…
Click for: Planned (which means - if you know me - *will* be done):
  • Complete treatment list, systematic and alphabetical, probably not cross-referencing in detail since I’ve found it unnecessary,
  • translate it to German, add all German versions here too (translated triggers & symptoms already),
  • complete “my own” lists,
  • reap the yearly study reviews and praps start studying the studies generally.
  • have a look at good overview fibro-sites containing similar fibro-references.
  • Some people think I should put my experiences, thoughts & references down in book form, but someone needs to approach me to convince me it’s worth the effort and that I’m the right person to do so.