2021-10-05, Tuesday - turned out good after 0.1mg melatonin at 3:30!
Vaccine or no?: wait till I’ve optimized the supps before deciding; but according to a FM-poll it looks as if I’d have severe symptoms for >2 weeks + >30 days, even from the Pfizer vaccines, which’d probably be best for me. If at all I cd try the first one tho… see below.
1st time NAC didn’t help sleep at all, but 0.1mg melatonin surprisingly did a good job.
Triggers & resulting Symptoms
SLEEP: 7h39, up 6x (2h36) ➔ Feeling 90% well, Ache 1 of 7 ✅, first the new form of passiflora didn't seem to help, neither did 500mg NAC, but then 0.1mg (only) melatonin came to the rescue, letting me be awake at 8:30!
FCS p1 22:15-
23:49 3’ 90%/1 p0 st1 drink fw1’ passiflora & theanine & GABA.
Thinking about the vaccine before bed came up again now.
0:20 1h37 90%/1 p0 st1 drink fw1’ 6, 1:05 NAC -1:57 = 1h37, of that fw: 1h…
2:25 46’ Not feeling drugged like from melatonin, but not sleepy much. Thoughts have gone on from the vaccine to imagining various imagined scenarios, doing autogenic training and how best to clean out the loft of my other place, with good ideas developing. But I would like to sleep now. NAC hasn’t helped stop thoughts. Praps cold shower, FCS#2. -2:47 = 22’ + further NAC + vaccine research. -3:11 = 46’, 35’ of that fw
3:28 4’ 90%/1 p0 st1 drink fw1’: OK, I give up, I’m taking a speck of melatonin again, as I slept 1.5h and have now been pretty much awake or drowsing for >3.5h. the smallest bit so far, maybe 0.1 mg.
5:17 3’ 90%/1 p2 st1 drink fw1’ (feel drugged, but sleeping…)
6:47 3’ 90%/1 p1 st1 drink fw1’ (same)
-8:30 Wow! Not drugged, awake!
Sum: 1h45+8h30-(3+1h37+46+4+3+3=)2h36 = 10h15-2h36 = 7h39, up 6x (2h36)
ACTIVITIES ➔ ACHE: Waking up and doing 3h of music production ➔ 90%/1! fast cycling ➔ 90%/1, acupressure ➔ 90%/1, TT dead easy 70' (& talking) ➔ 90%/1
Ache = also Exhaustion/Tired ➔ ?90%/1
Cycle➔ exhaustion, also as action➔pains;
TT = Table-Tennis➔ easy or effortless or strained or tough?
talk/meetings here (and actions➔pains?)
ACTIONS ➔ PAINS: Lying ✅, standing ✅✅, loins ✅, sitting ✅, arms up, elbow muscles better at last. ✅, neck stiffness 90° ✅, stiffness after poses ✅, walking ?✅❌🧐, fast cycling ✅❌🧐, bladder 1xp1-2 ✅, GI: heartburn without tryptophan only slight. ✅, talking ✅, mask-talking ✅❌🧐
Lie ➔ LBU = lower back unrest, hunchback, Neck, thighs, elbows, itch, cold/hot, nose stuffy
Stand ➔ Legs, back
Knees up ➔ right loin
Arms up ➔ pain
Sit ➔ Backside, lower back
Pose ➔ stiffness (Stiffness after holding a posture): Time 0-60’’, pain amount if faster.
Walk ➔ Elbows, feet, right knee
Cycle ➔ Feet, knees, backside, elbows, hands, neck
Drink ➔ Pee frequency, pain before peeing (p0-6).
Eat ➔ Esophagus block, stomach, gut, rectum, stool (IBSD?). GI for short
Talk➔Jaw (& Ache)
Mask-talk ➔ not sure how to describe it, just plain yucky.
SELF-PHYSIO: 71' ✅, fibro-work (fw) 1h50
Timing, AuTr 30’, hunchback-pillow 10’, cold shower 2x(10’), palpate 1’, belly 3’, back 7’,
neck 1+ 9’, neck 2 10’, twist-stretch 10’, loins 5’, yoga 5’, gums 2x30’’, V ‘, marionette-hang 1’, mirror 2’, shaking dance 1’, breath-hold 11’, RR x2’, HWB 3’, workout 7’
fw: Night: 1h40 + 10’*
THERAPIES: Further relationship stuff for next week's therapy.
Rigid - hardly possible to “play”, with words or actions…
Acupressure / Therapy, Doc/Diagnoses ? Acupressure 2h Tues & 2h Fri:
Supps to KEEP UP: SLEEP: 4x passiflora, GABA & theanine ✅, Inflammation: 5:30 serrapeptase 🧐, SAMe 🧐 & zinc (🧐); tea tree oil ✅ WAKE/FOG: 8:00 GABA ✅, theanine ✅ & malate 🧐, PAIN: Serrapeptase 🧐, ENERGY: Ribose 🧐, PAINS: arnica cream 🧐, clotted nostril: lavender gel etc. ✅🧐
For heartburn: Almonds first.
Supps TAKEN TODAY: Managed to prepare supps earlier. Leaving tryptophan decreased heartburn ✅ and is less complicated ✅; 1st 500mg NAC didn't help sleep ❌; melatonin 0.1mg did ✅. This passiflora doesn't seem to be helping like my other product ❌. Nostrils freer from lavender / tea tree oil ✅. Questioning when best to take glutamine 🧐 and theanine 🧐 at night.
/19:50 1x425 passiflora, selene, rosewort/magnesium carbonate/B1 at meal,
/22:00 600mg GABA & 500mg !glutamine
/22:00 arnica & tea tree
/23:50 2nd !1x425 passiflora & !500mg theanine & !600mg GABA
/1:05 500mg NAC + 3rd 1x425 passiflora
/3:30 melatonin 0.1mg did a good job for once.
/5:15 SAMe, zinc, serrapeptase.
/10:05 !600 GABA + !500mg theanine, !2x400 malate. Bit late.
night: lavender/tea tree under nostrils and behind ear, arnica on elbow, tea tree oil on gums.
day: 2nd malate, Ribose, serrapeptase, arnica on elbow, Tea tree oil on gums. ?NAC.
Supps UP NEXT: Mumijo: anti-inflammatory & IBS: ordered. +WAKE/FOG/FATIGUE: 1) NAC for mitochondria, oxygen (may be good after mask?), praps reduces glutamine 🧐. 2) ALC (I have LC: orally or injected?) 3) order NADH/+ 4) try mg glycinate at daytime first. then 5) order glycine? +SLEEP: NAC might too, but links only show a little evidence/arguments, schoolafm makes me think I shd reduce try reducing glutamine at night, use more in the daytime. Continue with 0.1mg or less melatonin! 🧐 +STIFFNESS/Bladder: Not decreasing GABA/glutamine, just leaving it as it is. A) Schüssler B) SUPPS C) MEDS Info:
A Homeopathy: Schüssler 2, 4, & 7 (need 3-6 months sez my acupressurist).
B SUPPS: Amino acids, Enzymes, Minerals, Vitamins
Amino acids: +B6 (as P5P), +Zn, +lithium orotate, more glutamine?, SAMe, glycine
1+2 Balancing GABA & glutamine: 1 Healthfully B6, 2 Perkins: Lithium orotate, Zn, 3 Jockers strange doses!? 4 Levy: vitamin B6, as P-5'-P?
1.1 Healthfully: tyrosine, tryptophan, B6, high complex carb early, low protein late"]
1.2 Zn Cynthia Perkins:: Low (<50mg) carb paleo, high animal protein; (Mg) Zn <40mg, lithium orotate 125-200mg, glycine often excitatory; praps, or not: taurine, vit. B6, SAMe, NAC, theanine"]
Glutamine/dopamine for stiffness/gait?!?: Low Dopamine in Fibromyalgia and CFS
SAMe: 400-800mg in the mornings, as stimulating, not much research.
SAMe - #2 by Anne (Sheila, links: Sahelian & webmd, now plus gapa)"]
NAC sleep -2400mg, better or worse; and more
See my links here: NAC = N-acetylcysteine
NADH/NAD+ B3-coenzyme for energy & post exertional malaise.
Acetyl L-Carnitine (ALC)?: Drink as liquid… Or ask sleep lab psychiatrist to inject it? ALC’s helping Jemima feel alert, dose: 2x750mg, for no sfx keep under 3000. Needs to be Acetyl for the brain she sez. Question about kinds of pain | Page 2 | Fibromyalgia Forum.
D-Ribose: muscle fatigue, ATP; GI-sfx, so keep under 500mg; little evidence.
Zinc again (bloods are in the middle)? Watch out for the sfx!
Magnesium - glycinate yes or no? malate? “60mg” carbonate in the roseroot?
Increase rose root from 1x200mg to 2 or 3 for serotonin etc. as well as blood pressure (normal now)?
Vitamin B12 injections again?
Vitamin B6 as P5P?
Vitamin C ultra-high dose 7,5g, to be put in 250ml NaCl solution & injected - if I can ever find someone to inject it.
Mumijo (origin unclear) for chronic pain (as well as IBS): Mumijo attenuates chemically induced inflammatory pain in mice - PubMed (2015)
Anti-ulcer activity: Ulcer healing activity of Mumijo aqueous extract against acetic acid induced gastric ulcer in rats - PubMed (2015)
German link: Mumijo – Das schwarze Naturheilmittel
Bentonite or medicinal clay never stopped my gastric acidity in my twens.
C MEDS repeat?: levodopa, blood fat meds, blood pressure
levodopa: repeat 50mg (100mg seemed to increase LBU),
Ezetimibe+atorvastatin if blood fats don’t stay down - smaller dose if at all?
Candesartan if blood pressure doesn’t stay down.
D) RELAX: A bit more Yoga Nidra on youtube.
E) MERIDIANS: real Chinese-trained acupuncture? Pardon Our Interruption
F) DOC Fibro-doc 200km from here?
G) REPEAT? Again in specks/diluted: Melatonin, 10% CBD oil, 5-HTP, ashwagandha.
Development: Covid-Vaccine or not? - and if so, when?
healthrising did polls about the covid-vaccine, one for CFS & FM, one for those “severely ill” amongst them, with functionality of only 30 or less (I’d say I’m between 40 and 30). https://www.healthrising.org/blog/2021/03/17/coronavirus-vaccine-poll-chronic-fatigue-fibromyalgia-severely-ill/
Whilst the take-away seems to be that getting the virus is worse than getting the vaccine, there is a percentage of 30% having severe vaccine-symptoms and longer than 30 days, definitely better with Pfizer & Moderna than AstraZeneca & Johnson&J.
In the summary, probably early on, for Moderna it says:
1st shot: 9% had severe symptoms 3% over 30 days, 2nd: 31% severe, 4% over 30 days.
However the poll result to date is
1st shot: 16% had severe symptoms 20% over 30 days, 2nd: 36% severe, 39% over 30 days.
For Pfizer to date:
1st shot: 15% had severe symptoms 28% over !14 days, 2nd: 21% severe, 30% over 30 days.
This would mean Pfizer is definitely preferable to date.
It says “Approximately forty percent of ME/CFS/FM patients who reported they thought they’d come down with the coronavirus reported not being back to baseline three months later.”
I’m not sure how far I can trust that number.
Also I’m not sure what to make of “>30 days” - what if that means sort of “endless”?
But if the numbers of severe long cases after vaccines have risen so high, where is that going?
And OTOH what if those with >30 days did not have severe symptoms all the time?
Thing is also: there is a possibility - albeit praps slim - that I won’t get the virus, as I am careful and my wife is vaccinated. However if I take the vaccine, maybe two, maybe a booster after a year that will be a lot of months sick. If my symptoms get worse due to the vaccine, I’ll have to stop working, it’s tough enough as it is.
Additionally to being on the verge of “severely ill” in the sense of this website, I am extremely over-sensitive to many things done to my body, more so than a lot of others who are also “severely ill”. My better sleep and my functionality is still extremely fragile and also depends upon all the many supps I am taking, and them being able to work in the balance I have been working at since April…
Ah, I’ve just seen the most recent post of “Eduard” from Germany on September 25, 2021, is speaking exactly my mind and Cord has answered:
“We’ll do another vaccine poll. Don’t forget the perhaps 20% of ME/CFS patients who appear to have gotten better after the vaccine shot or the people the 40% or so who were still sick after getting a COVID-19 infection after 4 months. I’ll try and fold all that in.”
As I get even very rare and severe sfx (1% or less get them) from a great majority of things put into or on my body (meds, supps, herbs, physio and food) the results of the vaccine poll to date implies that I will very probably be sick for longer than 2 + 4 weeks even from the Pfizer vaccine (which’d be the best for me). What I could think about is ‘trying’ the 1st Pfizer…
My GP - who understands my reservations - says he’d heard a new vaccine wd be coming out, but I’d need results on that after a year, so not much help…
A mate of mine asked how my vaccine experiences compared to my experience of swine flu. I must say swine flu put me down unusually for 2 weeks and may have triggered long-term problems, maybe my FM. And I have no direct bad vaccine experience, as I have avoided them for about 3 decades now… An alternative health practitioner around then once told me that I’d be the kind of person who would do well to avoid vaccines, but that doesn’t really help - and she didn’t help me in any way, either… So I can only infer from my general over-sensitivity.
Lessons in self-care #85 Careful this evening…
Reasons to be cheerful #88 Wahayy, good day after all!
Abbreviations & explanations
Entries start with night meds & sleep, before triggers/symptoms & treatments, because the “night before” is vital. So Fri-day starts with Thursday night, the night before Friday.
Pain "7" = crying (/out) point; my 1 is others 2-3, and due to pacing/treatments
My wife says my 7 is other people’s 12. 1 is probably 2-3. Due to pacing, keeping work down to 25% (12h/wk) and all my treatments (acupressure, GABA) and physio self-treatments I manage to keep getting my pains & Ache down quickly. 3 usually means the Ache, not pains; these I address individually, often automatically and on the fly now, e.g. twist-stretching everything or something specific after getting up.
TIME DATA, e.g. ' = mins, h = hours, 18:10:40', date YYYY-MM-DD
’ = mins = minutes, ‘’ = secs = seconds, h is hours as time length, 3h is 3 hours long, 3:00 is 3am, 15:00 is 3pm. 18:10:40’ means 40 minutes, starting at 18:10, = 10 minutes past 6pm up to 10 to 7pm. The date is the logical digital standard: YYYY-MM-DD.
SLEEP: slp, w, lbu/LBU, RLS, p, i
slp = sleep; reasons for getting up: w = (a)wake, lbu/LBU: lower back unrest (‘RLS’?), p: pee, p2: pain 2 of 7 before peeing, i: ideas.
ACTIVITIES: TT, e.g. "5:1"
TT = table tennis, 5:1 = score, usually showing how well I’m feeling: energy, relaxedness & alertness if the first number is much higher than the second.
SUPPS: supplements (as opposed to herbs & meds). Fx: Effects. Sfx: Side effects.
SELF-TREATMENTS (about everything else...)
The self-treatments listed are only things that I’m spotlighting & rewarding myself for at the mo by counting them; much of what I do at night is self-treatment to get back to sleep or alleviate (1-2h/d), certain regular movements at daytime, like twist-stretching (30’), writing this blog is self-treatment (30’-60’/d), and the further fibro-work is an indirect form.
Self treatments are usually preventative or always have the same positive effect (e.g. cold showering improves Ache and sleep) - at least I do them for that - and I use “” to show what I’m doing to alleviate something and mark it off in the details “/” whether it works well enough for a time or doesn’t’, e.g. Ache cold fast shower “”
fw = fibro-work, meaning reading and writing this blog, the reference base, on 4 fibro-forums and researching fibro-stuff on the web.
AuTr = Autogenic Training (usually to actively get - back - to sleep, so counting it as sleep and AuTr…),
FAT Flash/fast autogenic training: immediate image of dreamy floating in space or liquid from jaw to legs.
cold/FCS = Flash Cold Shower (20’’-60’’) , I count it as 10’ tho. At night with ear plugs & all lights off.
breath-hold/WHM-B-H = Wim Hof Method Breath-Holding,
Neck 1 is stretching top right to bottom left, vice versa & sky/ground, neck “1+” is stretching far further diagonally downwards, neck 2 is pressing my head against my hand “without moving”, left right and front.
loins = loins/groin = stretching the ligaments there.
ex = exercises
HWB = Hot water bottle,
RR = bp = blood pressure (Riva Rocci), plus pulse. Used to be normal, plus sometimes white coat syndrome, went up since fibro, seems to have gone down again enough so I’ve not only stopped lercanidipine, but also candesartan and am checking RR regularly.
“V” for loins = lie on back, legs up and let legs fall to sides;
twist-stretching more for the loins
➔ ⇄ ⇨➜ ➞ ➲ ↔:⇰↔ →:arrow_upper_right:
↯ ↛ ↺ ↮ ⇝ ⇾ ⟹ ⭆ ⤮: