Covid 19 Vaccination with FM/CFS

JayCS

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No DAO blood result yet. But finding (studies that say) vitamin C and NAC decrease it, altho I have been taking them as recommended, I've stopped both.
Plus I started doing Wim Hof's breath-holding exercise again yesterday and planning to do more than 1x3 rounds per day, did 2 today (but need a bit of cheering on for that to get down to it, hope just mentioning it will motivate me more). It's the only thing that helps, at least for an hour or so, which is a start, esp. useful after overdoing it.
Tonight I managed to shower without whining like the last few days, even managed to increase the cold bit, and decreased, rather than increased pain after...
 
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JayCS

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Summarizing my condition and researching more on how histamine and cytokines work, which has spawned further ideas once I've got my DAO,
I've also turned even more to treating single symptoms (once again...) with
physical therapy, esp. self-acupressure ideas from youtube for everything that crops up (starting with breathlessness and weak legs), bathing feet, creaming myself, increasing the breath-holding, and changing my supps as said above has let me tolerate cold showering more, which increases energy & decreases pain.
Trying more magnesium glycinate again at daytime, going to try nux vomica are something similar for the nausea.
For the esophagus blocks I'm looking for videos that have ideas for similar problems like steakhouse syndrome, just the feeling food getting stuck, whatever.
As to consulting people - there are a few docs on my list, but: I've just read a comment on healthrising that one of the experts for vaccine side effects in ME/CFS & FM said these type of severe effects can take 6 months or more... Not that much comfort... :rolleyes: I tried to find how I can contact that doc: saw she charges 1.000$ per hour. And can't make the effects last less than 6 months? So: I'm my man, she ain't!
 

LolaMerle

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Jan 4, 2022
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49
Reason
DX FIBRO
Diagnosis
12/2021
Country
US
State
WA
Female, 67, US, and Pfizer. I felt like I had the flu with body aches and fatigue for about four days. I didn’t have a reaction to the second shot or the booster.
 

JayCS

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Weeelllll, looking for videos brought on drinking fizzy water for "steakhouse syndrome", then 3-4 acupressure videos for each of 5-6 symptoms I looked up, at least 1 of them good. Due to the histamine/cytokine idea, I think the supps changes and foot baths seem to have got a handle on my temperature regulation, so managed to cold shower more as well as now breath-hold more, which is I think getting the inflammation reaction down and now resetting me again, whilst the acupressure is having a lasting effect, enabling me to go for a brisk 40' walk and do some singing. When I'd gone too far another bout of breath-holding reset me again...
Have I cracked it 😏 🥳 :cool: 🤩 or am I gonna crash? :confused::mad::eek::alien: Tomorrow is the end of the 6th week...
 

JayCS

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Didn't crash. *phew.* And above symptoms remain cracked:
Stopping NAC improved temperature, self-applied acupressure improves many single symptoms (7 up to now!).
Next priority was burning sinuses, nausea, headache, esp. night/morning.
Reading histamine decreases GABA, increasing that has decreased it (& also the bladder pain again).
Reducing histamine food seems to help, so I'm slowly turning to that, esp. in the evenings and replacing soy drink at night.
Even with less burning sinuses, and before that, my nostrils still get stuffy, but I've at last found acupressure that really helps.
("Unblock Stuffy Nose & Sinus Drainage in 60 Seconds"). "At last" because I've tried 5 or 6 methods before and none helped.

DAO was not reduced, so my GP's given up. I'll probably be supplementing it all the same, cos there are no side effects.
But he agreed when I asked if it could still be histamine or mast cells or cytokines, put he'd be out of his depth there.
And agreed on using nux vomica D12 for the nausea (not working tho, but praps I need to take it regularly and longer).

So my next suspicion next to treating it like histamine intolerance is mast cell activation syndrome (MCAS).
This is actually also clearly mentioned on my starting point, the experts on jab-side effects on Health Rising.
But I had to work thru Monday's 25 ideas first (physio, supps, histamine & various doc ideas), which I now have:
Physio is working well, for supps I still have to order DAO & praps copper, food I'm changing meal by meal, contacted 5 docs.

Connections between MCAS and FM: similar symptoms; syndrome; co-morbidity; mast cells may be a cause/biomarker.
And - jackpot again 🏆- beyond the frontier of medical research. Probably closer to ME/CFS, POTS, Ehlers Danlos & Lyme tho.
Might have to do some forum hopping.
First results (e.g. hoffmancentre): Contacting normal docs may only lead to tons of bloods, then meds like antihistamines which'd make me tired, the worst thing that can happen to me. Like FM, it's not reversible, but differently gets a bit worse. So it'd be something different I have to learn to live with....
 

JayCS

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Update:
I've improved most of my histaminey jab-symptoms by Increasing breathing-exercises, decreasing histaminey foods and using most of the supps (A & B) suggested by hoffmancentre under natural treatments for MCAS, so am back up from 10% "physically active" to 25-30% (fibro alone was 35-40%). I had one set back until I realized histamine is highest at 3:00, so I have to combat it more at night.
That tho has led to sleep getting considerably worse again. Re-trying NAC at 5:00 improved sleep after, but created a bit of a GI problem.
Re-trying vitamin C had let to a setback again.
Checking on Tuesday if my allergologist can find anything or has ideas.
A burnt tongue feeling for days now and right after the jab is still a mystery.

My blog showed my worse/changed esophagus blocks had started a month before the jab, maybe from a gastritis, so gastroscopy on Friday. Drinking fizzy water hardly helps. Only being more careful by stopping eating as soon as the slighest pressure arises does.

Getting better means getting long due tooth appts. done, see how that goes. The long tooth clean yesterday was very tough, but better now.

Getting better also means considering a 2nd jab. Everyone is suggesting this, and at least I know where that trip will end. Looking up, omicron here is despite the hype by far not the most common type yet (25% Jan 5th), which means the CoV-danger for me is still far less calculable. I'll phone with my boss about this, but there's no doubt at the moment I'll be doing it.

The positive side effect of the jab remains: Due to not tolerating the time- (and money-)consuming expert acupressure anymore, I'm realizing after 5 weeks I can now keep doing without going there, which is liberating and also proves my in-/self-dependency. Still zero tolerance for local pains: Tonight I woke up with slight pain on my elbow tendons and immediately massaged that away for 2' with my massage pistol.
 

JayCS

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It's getting a bit absurd: I'm now doing my best to get my tooth taken out quick after the endoscopy and then get the next jab quick, cos the effect of the first jab is getting lost with every day... Next week would be Day 72. So my 2nd jab would actually be the "first"... :rolleyes:. But I still haven't recovered from the first...
 
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notsogrimreaper

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Nov 23, 2021
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DX FIBRO
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04/2018
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US
Well I finally saw my pain management/ neurologist for clearance to get the JAB, I have my first shot Friday and am shaking in my shoes. Hopefully everything will be fine.
 

JayCS

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saw my pain management/ neurologist for clearance to get the JAB, I have my first shot Friday and am shaking in my shoes. Hopefully everything will be fine.
I'm pretty sure it will be, notsogrimreaper!
I had my 2nd shot today, flanked by an antihistamine this time. I wasn't shaking at all, I'm pretty tough that way, but my wife was.
Some histaminey/MCAS symptoms are starting up, so I'm increasing GABA as well.
My update: it's a Schatzki ring constriction in my esophagus that is probably causing the dysphagia and needs to be dilated in hospital.
My allergologist and the questionnaire of an MCAS-expert have pretty much confirmed my clear suspicion of MCAS.
If we thought fibro was vague and at the forefront of research, MCAS is even more so... but at least I've been doing everything right.
 

Jemima

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I'm pretty sure it will be, notsogrimreaper!
I had my 2nd shot today, flanked by an antihistamine this time. I wasn't shaking at all, I'm pretty tough that way, but my wife was.
Some histaminey/MCAS symptoms are starting up, so I'm increasing GABA as well.
My update: it's a Schatzki ring constriction in my esophagus that is probably causing the dysphagia and needs to be dilated in hospital.
My allergologist and the questionnaire of an MCAS-expert have pretty much confirmed my clear suspicion of MCAS.
If we thought fibro was vague and at the forefront of research, MCAS is even more so... but at least I've been doing everything right.
Sending strength, JayCS ✊
 

Jemima

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Just had my booster - third time with Pfizer - and once again no symptoms at all. Good luck to everyone heading into a vaccine center 🍀
 

notsogrimreaper

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Nov 23, 2021
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DX FIBRO
Diagnosis
04/2018
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US
ok 1st shot done - arm is sore as hell .. general muscle aches start of a headache, woke up at 1 am with my arm feeling like it was broken the pain was that bad couldn't fall back to sleep for over 3 hours, finally passed out to get up at 7 for work. exhausted and arm is killing me. Cant wait to go home and take a nap. will check in Monday.
 

Paddington1

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Feb 10, 2022
Messages
7
Hi All,

Has anyone with FM, CFS etc had the Covid 19 vaccination yet and if so, other than the obvious local jab site discomfort, experienced bad enough reactions/flu symptoms (shakes, sweats, pain in all joints) to be bed ridden?

As we all know, there is little to no representation for people like us amongst the various studies/reports so far.

If you have had the jab, please reply with the following information so we can all use this easily - for the purposes of this survey, please exclude a 'sore arm/shoulder' from reactions:

1) No Reaction

2) Reaction:
which country are you in?
which vaccine received?
brief description of sympton/s?
how long before back to (your) normal?
age (optional for the vane:)
sex? (please don't say yes or no ;-)

Thanks and wishing you ALL well.
,1, yes I had a bad reaction after the first back in February 2021. I was off my feet for about two weeks. I felt as though I had flu with all the symptoms.
2, I am in England. I had Astra zenica for first and second jab. I was much better after the 2nd Jab in May 2021. I had moderns for a booster and was fine.
3, I am now 65 years. Female.
I would be so good if a drug company picked up on fibromyalgia and did some research.. there are so many of us.
 
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