Fibromyalgia References: Symptoms, triggers, treatments (to be intertwined)

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.

INTRODUCTION - version 2021-06
Reformulating our experiences is helpful, but I also feel the need to bundle all I find out, for quicker reference.
I can only partly hyperlink items and have to renew versions once a month. But I love it here. :slight_smile:

Cause/Trigger list

A. THEORIES (pathogenesis; etiology)
A.1. CSS, central sensitization syndrome, central sensitivity syndrome

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…

A.3. SFN = Small Fiber Neuropathy

https://pubmed.ncbi.nlm.nih.gov/33223078/

A.4. genetic predisposition

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

A.5. Neuroendocrine

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

A.6. Mitochondria/ATP

Theory of 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: Symptoms, triggers, 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. (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)

A.9. (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.

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

https://pubmed.ncbi.nlm.nih.gov/33401557/

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
https://www.healthrising.org/blog/2021/04/13/muscle-pressure-fibromyalgia-old-paradigm/ 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

https://pubmed.ncbi.nlm.nih.gov/31327695/ 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.

- ...


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

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

C.2. Psychological:

Trauma, stress, panic disorder,
bipolar disorder (https://pubmed.ncbi.nlm.nih.gov/33182759/)

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

SIBO

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

Fructose (& fructans) decreasing serotonin

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5715322 = https://pubmed.ncbi.nlm.nih.gov/29250522/ (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

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


Z. My own "causes" (JayCS)

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, and what might have caused it is … stress, pain, overexertion all my life…
E. Short-term flares: Bad sleep, overdoing it/overexertion, willingly or unknowingly.


Version

Starting 2021-06-13, June 13th. - Delete after starting a new post.

1 Like

Symptom list

To Do/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")
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…)"]

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:

https://www.optometrists.org/dry-eye/what-is-dry-eye-syndrome/
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).


0. GENERAL

Docs that don’t know fibro: Phone around, asking at the desk how many fibromites they treat.
Touching pain = allodynia
Amplified pain = hyperalgesia
Activity level significantly decreased
Edema
Fatigue from physical exertion or stress, cf. my 7 types of fatigue
Feeling cold
Feeling hot
Frequent sighing
Flu-feeling
Swollen-feeling
Sweats
Lymph nodes swollen, especially in neck and underarms
Trembling, tremor
Weight gain or loss, unexplained
Hands/Feet: Raynaud: Cold hands and feet (extremities), poor circulation there.
Lungs: Shortness of breath with little or no exertion (esp. arms)

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.


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

Remember: Pain caused by Fibromyalgia isn’t a threat (Jemima).

1.0. All over

Overstraining something: Twist-stretch: stop whatever & twist limbs, back or neck gently & hold it for 10 to 20 seconds.
Ache all over
Feeling run over by a truck=lorry/car/train/rhino
Feeling like walking in a lead suit… / like the tin can man
“Joint” pain (probably tendons, i.e. tendinomyopathy)
Nerves burning
Morning stiffness
Stiffness, morning
Stiffness, all day, after not moving for a while, after overexertion. Cf. stiff person’s (man) syndrome
Muscle pain
Muscle spasms
Muscle twitching
Muscle weakness
?Pain that ranges from moderate to severe
Pain that seems to moves around the body (i.e. alternating)
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

1.1. Legs

Feet - Plantar arch or heel pain
Thighs
Restless Leg Syndrome, RLS
RLS
Hip

1.2. Torso/Trunk

Back pain: Epsom salt-baths (magnesium sulfate)
Disk/Dics Degeneration, DDD, Degenerative Disc/Disk Disease
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.
Abdomen/belly
Chest
Chest, mimicking heart attack
Ribs - Inflamed Rib Cartilage, Costochondritis
Costochondritis, Ribs
Breasts, lumpy & tender
Clavicula/collarbone
Collarbone/clavicula
Neck pain: Epsom salt-baths (magnesium sulfate)

1.3. Arms

Elbow

1.4. Head

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


2. NEUROLOGICAL / COGNITIVE

Neurologist
Fibro-Fog: Delayed reaction to physical activity or stressful events

Brain fog:

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

Carpal Tunnel
Feeling spaced out
Smells hallucinations
Thinking unclear
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

Becoming lost/disorientated, confusion, difficulty expressing and understanding words/numbers, making decisions/judging, paying attention/concentrating/being distracted, remembering short- (sentence) or long-term, recognizing: routines, left/right, number/word orders. Slowed speech, stuttering, stammering, Word-finding difficulty/using wrong words.

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


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

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

Depression:
Decreased appetite
Depressed mood
Feeling helpless and/or hopeless
Frequent crying / cry easily
Inability to enjoy previously enjoyed activities
Suicidal thoughts / Suicide attempts

Anxiety:
Anxiety or fear when there is no obvious cause
Fear of someone knocking on the door / telephone ringing
Irrational fears
Panic attacks
Phobias
Self-confidence, social anxiety
Feeling worthless

Heightened awareness of symptoms
Irritability
Overreaction
Personality changes
Abrupt and/or unpredictable mood swings, like anger outbursts, uncontrollable rage


5. GASTROINTESTINAL

Abdominal cramps
Bloating
Decreased appetite
Food cravings
Frequent constipation
Frequent diarrhea
GERD
Heartburn
Increased appetite
Intestinal gas
Irritable bladder
Irritable bowel syndrome
Nausea
Rectum burning irritation: Tomatoes or other personally irritant foods.
Regurgitation
Stomachache
Vomiting
Weight gain
Weight loss


6. EYES / VISION

eye specialist, oculist, ophthalmologist
Eye pain
Difficulty switching focus from one thing to another / blurry vision
Frequent changes in ability to see well / vision changes
Night driving difficulty / Poor night vision


7. UROGENITAL

Decreased libido (sex drive)/Impotence
Endometriosis
Frequent urination
Painful urination
Bladder pain
Pelvic pain
Prostate pain
Premenstrual syndrome (PMS) worse, Menstrual problems


8. SENSITIVITIES / INTOLERANCES

Alcohol
Allodynia (hypersensitive to touch)
Chemicals in cleaning products, perfumes, etc.
Foods
Light
Noise
Odors = smells
Sensory overload
Pressure & humidity changes
Extreme temperature changes
Vulvodynia


9. SKIN

Bruising
Bumps and lumps
Eczema or psoriasis
Hot/dry skin
Itchy/Irritable skin
Rashes or sores
Scarring easily
Sensitivity to the sun

Sweating: tablets, mineral powders, botox, change clothes, mattresses, furosemide, HRT, Balance App by Dr. Louise Newson(?), Neat 3B face saver, oxybutenin, clonodine hydrochloride, is it SFN or CRPS-I? GABA? Caused by meds like duloxetine?

I’ve always been a bit of a sweater, which was considerably reduced by fibro, meaning I had to change my t-shirts less often; until my TCM-acupressurist restored my cold tolerance again by activating the “inner cooking pot” which stabilized my temperature tolerance again. So I’ve never had reason to think of it in terms of fibro. But now I’ve had a look on pubmed and seen


10.DRYNESS / Sicca syndrome

a) eyes,
b) mouth →
c) teeth & gum problems,
d) throat (sore, speaking, singing),
e) stomach (hyperacidic),
f) gut (constipation),
g) skin.
If eyes/mouth, get Sjögren’s Syndrome checked (AI)
Eyes: Dryness of eyes and/or mouth (sicca)
Mouth: Dryness of eyes and/or mouth (sicca)
Throat: Dryness of throat, Hoarseness
Throat: Thirst increased
Throat: Sore throat


Heart, Hair, Nails & Teeth probably not FMS itself, check...like all of the above

(CARDIOVASCULAR (Heart) Fluttery heartbeat, Heart palpitations, Irregular heartbeat, Loud pulse in ear, Pain that mimics heart attack (costochondritis), Rapid heartbeat
HAIR Dull, listless hair, Heavy and splitting cuticles, Temporary hair loss
NAILS Irritated nail beds, Nails that curve under, Pronounced nail ridges,
TEETH Dental problems, Periodontal (gum) disease
OTHER Canker sores, Hemorrhoids.


My Symptoms (JayCS) (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.


Version

Starting 2021-06-13, June 13th. - Delete after starting a new post.

1 Like

Treatment list

Ordered systematically here first, alphabetically later.
Docs/therapist-types named for each treatment field:
And remember - 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, holistic/functional medicine doctors

A.1. Pacing: Fatigue,

= finding the invisibly moving sweet spots of each activity.
= learning limits and how they change.
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

A great not-to-do-list:
A NOT-To-Do List for the Chronically Ill which @BaltimoreBaby found here: https://myheartsisters.org/2013/10/06/not-to-do-list (© 2013 Toni Bernhard)

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

Pics & Memes that visualize fibromyalgia and other chronic pain illnesses - #92 by JayCS (German: “Psychohygiene”)
A nice overview by @Katha I found which I don’t want to be lost:
Fibromyalgia/CFS: Picturing the Invisible

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
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

Reminders (for brain fog)

sticky notes, calendar, notebook, pill box with the days on them, family that watches out, friends that remind you of things.
tell people so they know why.
delegate.


B. PHYSICAL/BODY (Active vs. Passive, Hands, Heat/Cold, Devices...)

TCM doctors (Chinese trained if possible): acupuncturist, Chinese herbs/teas, holistic/functional medicine doctors,
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.

Passive, done by therapist:...

This doesn’t quite fit here, some of this can be active, see below…
Germany 2000, Offenbächer et al. Physical therapy in the treatment of fibromyalgia - PubMed Cryotherapy is mentioned here as possibly helpful for FMS, along with PT, trigger point injection, massage, acupuncture, biofeedback, TENS, recommending a multidisciplinary approach. “Based on anecdotal evidence or small observational studies physiotherapy may reduce overloading of the muscle system, improve postural fatigue and positioning, and condition weak muscles. Modalities and whole body cryotherapy may reduce localized as well as generalized pain in short term. Trigger point injection may reduce pain originating from concomitant trigger points in selected FM patient. Massage may reduce muscle tension and may be prescribed as a adjunct with other therapeutic interventions. Acupuncture may reduce pain and increase pain threshold. Biofeedback may positively influence subjective and objective disease measures. TENS may reduce localized musculoskeletal pain in fibromyalgia. While there seems to be no single best treatment option, physical therapy seem to reduce disease consequences. Accordingly a multidisciplinary approach combining these therapies in a well balanced program may be the most promising strategy and is currently recommended in the treatment of fibromyalgia.”

Active: do by yourself:...

This doesn’t quite fit here either, all this can be active and passive…
Finland 2013, Gauffin et al.: Do fibromyalgia patients use active pain management strategies? A cohort study - PubMed Active pain management strategies are most efficacious for fibromyalgia patients, regardless of the severity of fibromyalgia or optional comorbid depression. / The most frequently reported pain management strategies were physical exercise (54%), physical therapy (32%) and cold treatment (27%).
(Journal of Rehabilitation Medicine - Do fibromyalgia patients use active pain management strategies? A cohort study - HTML)

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 (Yoga; 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:

Electrotherapy

Careful: Triggers focal seizures (that’d be me)
TENS unit (pads) or TENS pen or gentler: microcurrent unit (relaxes breathing)
Microcurrent unit (gentler than a TENS unit)
TENS unit or gentler: microcurrent unit (relaxes breathing)
microcurrent unit gentler than a TENS unit Microcurrent electrical neuromuscular stimulator

Electroacupuncture

TMS, Transcranial magnetic stimulation (= brain magnetic stimulation)) and transcranial direct current stimulation (tDCS)

https://fibromyalgia.newlifeoutlook.com/electrical-brain-stimulation
(New pain treatment!)
Transcranial magnetic stimulation - Wikipedia (2009: US$350/ session)

pubmed:

EU 2020 Evidence-based guidelines on the therapeutic use of repetitive transcranial magnetic stimulation (rTMS): An update (2014-2018) - PubMed
“The current recommendations are based on the differences reached in therapeutic efficacy of real vs. sham rTMS protocols, replicated in a sufficient number of independent studies. This does not mean that the benefit produced by rTMS inevitably reaches a level of clinical relevance.”

Spain 2020 review of 14 studies Effects of transcranial direct current stimulation and transcranial magnetic stimulation in patients with fibromyalgia. A systematic review - PubMed
“The application of tDCS to the motor cortex is the only intervention shown to decrease pain in the short and medium-term in patients with FM. The application of both interventions showed improvements in pressure pain threshold, catastrophizing and quality of life when applied to the motor cortex, and in fatigue when applied to the dorsolateral prefrontal cortex. The effects of these interventions on anxiety and depression are unclear.”

Finnland, 2017, meta-analysis Effectiveness of repetitive transcranial magnetic stimulation in patients with fibromyalgia: a meta-analysis - PubMed
“There is moderate evidence that rTMS is not more effective than sham in reducing the severity of pain in fibromyalgia patients, questioning the routine recommendation of this method for fibromyalgia treatment.”

South Korea, 2020, narrative review Effect of Repetitive Transcranial Magnetic Stimulation on Pain Management: A Systematic Narrative Review - PubMed
"Overall, our findings suggested that rTMS is beneficial for treating neuropathic pain of various origins, such as central pain, pain from peripheral nerve disorders, fibromyalgia, and migraine.

Brazil, 2016, review & meta-analysis Repetitive Transcranial Magnetic Stimulation for Fibromyalgia: Systematic Review and Meta-Analysis - PubMed
“In comparison with sham stimulation, rTMS demonstrated superior effect on the QoL of patients with FM 1 month after starting therapy. However, further studies are needed to determine optimal treatment protocols and to elucidate the mechanisms involved with this effect, which does not seem to be mediated by changes in depression, but that may involve pain modulation. Level of evidence 1b.”

Taiwan 2019, pilot study Analgesic effects of repetitive transcranial magnetic stimulation on modified 2010 criteria-diagnosed fibromyalgia: Pilot study - PubMed
"Left prefrontal rTMS has an analgesic effect in … fibromyalgia and MDD patients. "

USA 2018, systematic review, rTMS, tDCMS https://pubmed.ncbi.nlm.nih.gov/22631436
“Studies involving excitatory rTMS/tDCS at M1 showed analogous pain reductions as well as considerably fewer side effects compared to FDA approved FMS pharmaceuticals. The most commonly reported side effects were mild, including transient headaches and scalp discomforts at the stimulation site. Yearly use of rTMS/tDCS regimens appears costly ($11,740 to 14,507/year); however, analyses to apapropriately weigh these costs against clinical and quality of life benefits for patients with FMS are lacking. Consequently, rTMS/tDCS should be considered when treating patients with FMS, particularly those who are unable to find adequate symptom relief with other therapies. Further work into optimal stimulation parameters and standardized outcome measures is needed to clarify associated efficacy and effectiveness.”

Cranial electrotherapy stimulation (CES)

e.g. "Alpha-Stim" (R)

Wagenseil et al. 2018: https://pubmed.ncbi.nlm.nih.gov/30475746/: No significant change of sleep in healthy young women, slightly lowers the frequency alpha-waves.
Morriss et al. 2019: https://pubmed.ncbi.nlm.nih.gov/31103808/: May improve anxiety in people when psychotherapy hadn’t helped, is also cheaper.
I tried Alpha-Stim: Here is my honest review – CurrentBody user experience.
Careful: I wdnt tolerate it with my epilepsy.

Water therapy, hydrotherapy

moving in water, using hot or cold water etc.

Using Hands

Manual therapy
Manipulation
Massages various
Connective tissue massage
Myofascial massage
Osteopathy
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.

Mechanical devices

Cupping
Kinesio tape/taping Kinesio Tape, anyone?
Footwear change for skeletal problems
Insoles change for skeletal problems
Acu ball for TMJ
Gum shield, mouth guard, tooth guard: for grinding teeth, bruxism.
Traction.

Physical therapy exercises
Body parts
Hand exercises
Neck exercises
Back exercises
Back exercises (“yoga“)
Qi Gong
Stretching - gentle, dynamically, short, like this: https://youtu.be/fONfo3OpoGI (Bob & Brad)
Tai Chi
Wim Hof Method, WHM
Yoga types
Yin yoga
Back exercises

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.
Twist-Stretching

Hygiene - perhaps differently

Dental hygiene / Tooth hygiene
Teeth brushing
Teeth flossing
Showering
Washing

(Bioresonance therapy - whatever you think of it…)


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

holistic/functional medicine doctor, 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:
Mayo clinic is neutral to weak against for diet. There is some relative recent research on gut biome and fibro. (Des)
Easily understandable (LoneEra):
Foods to Avoid with Fibromyalgia
Fibromyalgia Diet: What to Eat, What to Avoid to Ease Fibro Pain

Study: 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.)

For FMS: Fructose & fructans free
For Gut / IBSD/C: Fructose free, elmination diet
For Stomach: …
For Bladder: …
For Cardiovascular: Mediterranean

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

Fructose free

for FMS: Fibromyalgia Syndrome: A Metabolic Approach Grounded in Biochemistry for the Remission of Symptoms - PubMed (2017)

Whole foods diet (i.e. not processed)
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 (fermentable oligo-, di-, mono-saccharides and polyols, i.e. simpe/short-chain carbs), incl. fructans
vegan/vegetarian/non-dairy
low oxalate,
low salicylate
low histamine
no nightshade
anti-inflammatory: wheat, milk, gluten, eggs…
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
elimination diet for IBS & stomach hyperacidity
Hay diet (“separate” proteins & carbs in one meal, seperate plant & dairy protein) for IBS
vegan + paleo = pegan (Ernährungsdocs on German TV/youtube)

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

ozone/oxygen-autohemotherapy (ozone/oxygen-injections)
hyperbaric oxygen therapy HBOT


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

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

Inside

Air rooms

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,
heated matress pad
hard small spelt cushion or folded towel under hunchback
weighted blanket or thicker continental quilt.
change clothes
change blankets

Heating - moisten air, but not too much.
cf. Better sleep - 30 wakers & stoppers

Light:
blackout curtains,
blackout blinds,
eyemask

Noise:
ear plugs - many different types,
noise cancelling earphones,
talk with neighbours

Outside
Weather protection

Sun! :sun_with_face: good for some, bad for others - but carefully - amount, shielded…
Wind protection: Hoodie, windbreaker/windcheater.
Wind protection: windbreak, shelterbelt, shielded, blanket on balcony.
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.

Aids for sitting, walking
Chair cushion to go (restaurant, bench)
Foldable chairs to go: esp. camp chair (light).
Walker/rollator


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…

PAIN-Meds

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

4.5mg for fibro (instead of 50mg for alcohol reduction).
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
Side effect in one case: severe muscle rigidity at 3:30.
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.
https://pubmed.ncbi.nlm.nih.gov/30821677/ 2019 pain: could be a viable treatment option cos minimal adverse effects and cheap.
https://pubmed.ncbi.nlm.nih.gov/30917675/ 2019 pain: increased levels of endogenous opioid production, known as opioid rebound effect
https://pubmed.ncbi.nlm.nih.gov/29885638/ 2018 immune review: may become a promising immunomodulatory agent
https://pubmed.ncbi.nlm.nih.gov/24526250/ 2014 anti-inflammatory/pain: glial cell modulator.
https://pubmed.ncbi.nlm.nih.gov/28325149/ 2018: small: safe, likely
https://pubmed.ncbi.nlm.nih.gov/32845365/ 2018 pain: promising
https://pubmed.ncbi.nlm.nih.gov/29377216/ 2018 pain incl. FMS: safe, but unproven
https://pubmed.ncbi.nlm.nih.gov/30248938/ 2018 = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313374/ overview: FMS too small.

Celecoxib (Cox-2-inhibitor),
Etoricoxib (Cox-2-inhibitor),
Tilidine (opioid)
Cox-2-inhibitors: Celecoxib, Etoricoxib
Opioids/opiates: Tilidine, (Ketamine)

Embeda CR 20-0.8

https://www.livingwithfibro.org/t/anyone-used-embeda-cr-20-0-8-before/9733 (combination of opioid (morphine) and opioid antagonist (naltrexone))

Metamizole (‘Novalgin’)
Diclofenac
Venlafaxine ‘Effexor’ SNRI: depression, anxiety, pain.

Milnacipran (trade names **Ixel** , **Savella** , **Dalcipran** , **Toledomin**), SNRI: fibromyalgia, depression.

https://www.livingwithfibro.org/t/savella-people-on-it-more-than-1-year/13644/4

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: https://en.wikipedia.org/wiki/Guaifenesin_protocol vs. http://www.fibromyalgiatreatment.com/the-guaifenesin-protocol.html
Tramadol
Codeine/paracetamol = codeine/acetaminophen = Co-Codamol/Zapain (for gut: omeprazole),
Co-Dydromol
Naproxen, antiinflammatory.
Oramorph
Tylenol, Emtec, Zapain…
Paracetamol = acetaminophen
Citalopram
Diazepam
NSAIDs: Ibuprofen, Aspirin, Naproxen
Fluoxetine

SLEEP/PAIN-Meds
amitriptyline (‘Endep’): sleep, pain.
nortryptyline: sleep, morning aches, less sedative than amitriptyline

SLEEP-Meds
Zopiclone (very addictive)
theanine: sleep. Side fx: GI. 400mg. headache, sleepiness.
https://www.webmd.com/vitamins/ai/ingredientmono-1053/theanine
https://mentalhealthdaily.com/2015/07/29/l-theanine-side-effects-adverse-reactions-list/
If GI: keep low & with meals.
https://www.healthline.com/health/l-theanine#risks-and-side-effects

BCG vaccine (tuberculosis)

is being tested, cf. https://www.livingwithfibro.org/t/bcg-vaccine-study-for-fibro/13127, cf. causes: cytokines, chemokines; & the related FM/a-“test”. https://fibromyalgiaresources.com/vaccination-and-fibromyalgia/

E2. SUPPS

functional medicine doc, holistic 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 https://pubmed.ncbi.nlm.nih.gov/26500584/ Unclear if and how it works.
GABA in food: https://www.livestrong.com/article/478780-a-list-of-foods-with-the-highest-gaba/
Gabapentin: epilepsy, neuralgia - Needs 1-2 weeks to develop it’s effect. Side-effects: Increases tiredness.
https://www.livestrong.com/article/478780-a-list-of-foods-with-the-highest-gaba/

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.
https://pubmed.ncbi.nlm.nih.gov/32104332/ The role of serratiopeptidase in the resolution of inflammation, Asian J Pharm Sci. 2017 May
https://pubmed.ncbi.nlm.nih.gov/33134103/ Serratiopeptidase: a systematic review of the existing evidence. Int J Surg. 2013;11(3):209-17
https://pubmed.ncbi.nlm.nih.gov/29404039/ 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

Side effects: GI, skin, muscle pain.
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.
https://naturaldoping.de/serrapeptase/#Nebenwirkungen_und_Risiken_von_Serrapeptase
Apotheke: 45€, start with small dose? price?
studies

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: https://www.schallers-gesundheitsbriefe.de/archiv-der-gesundheitsbriefe/archiv-3/glutamin-und-glutamat-heilmittel-und-rauschmittel/

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

https://www.livingwithfibro.org/t/has-anyone-seen-the-research-on-melatonin/13416/16?u=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.

BTW - there are quite a few types of B12 = cobalamin. The normal one - cyancobalamin - is the cheapest, normal and least best sort…
https://perniciousanemia.org/b12/forms/
After trying an oral combination of the various types to no avail (1g), I wanted to try injections. I contacted a specialized “Apotheke” called “Manufaktur” (Arnika Apotheke, Unteraching). I actually wanted ‘only’ 1mg, but they had only 5mg injections and I’d’ve preferred Adenosyl-Cobalamin, but they only had second best Methyl-Cobalamin at that time. My wife (ex-nurse) injected them s.c. into my belly every 2 weeks. Result: My levels rocketed to 1700 - no problem, surplus is, so funny - but they didn’t do anything for me. We repeated it a year later, cos I hadn’t anything left to experiment with :wink: and nothing was helping my sleep enough. No help. But I don’t regret trying them. Wasn’t that expensive.

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)

D-Ribose: a simple sugar: for pain.

E3. HERBS

functional medicine doc, holistic medicine doc, alternative medicine doc, ‘environmental doc’…, 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)
Insoles, special…(?)


Version

Starting 2021-06-13, June 13th. - Delete after starting a new post.

1 Like

Studies list

100+ 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.).

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 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

Update

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: Symptoms, triggers, treatments (to be intertwined) - #13 by JayCS
Fibromyalgia References: Symptoms, triggers, treatments (to be intertwined) - #13 by JayCS

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: Symptoms, triggers, treatments (to be intertwined) - #13 by JayCS, 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
Fibromyalgia Diet: What to Eat, What to Avoid to Ease Fibro Pain
Diets: Dietary Interventions in the Management of Fibromyalgia: A Systematic Review and Best-Evidence Synthesis 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.

@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?

1 Like

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…