Covid 19 Vaccination with FM/CFS

[notsogrimreaper]

my friend said it aptly the anagram for Omicron is moronic

 

[Jemima]

Yep --- here we go again.
When the pandemic first started, I knew that there would never be a "Normal" to "get back to" because it would change things too much. What I did not actually think of was one variant after another, and possibly the need for yet another different vaccine, and maybe then yet another.

It's hard to know these days what is safe to do and what is not. I have had some international travel planned ever since 2019 and have put it off, and now am not even sure that I should do it in 2022. I really hate to think that all the places I have planned to go to, and all the money I have scrimped and saved all my adult life to have so I could go, will not be available to me after all because of this.

Jemima, love your thought of alien overlord! It does sound like that, doesn't it?
We have to find the humor in this somehow...........

I'm so sorry about all the uncertainty for your trip, Sunkacola. I know it means a lot to you.

Perhaps if everything is now becoming alien-overlord-level surreal, that might be a sign of a positive twist that we've not yet seen coming Here's to the unexpected...

 

[Jemima]

my friend said it aptly the anagram for Omicron is moronic

That made me snort! Thank you. Humour is very helpful

 

[Lemon]

I have a family member that can’t take vaccines bc of severe allergic reaction history. I was vaccinated in March, Pfizer, and am getting a booster soon. My heart felt Really fast going home from hospital that gave me the shots, then an extra severe migraine with all the frills (nausea and vomiting). I messaged my neurologist and was given some corticosteroids for three days, that helped me feel better; this happened after first shot, second was not as bad. My little kid just got vaccinated and was extra tired/irritable but keeping extra hydrated with favorite drinks like herbal teas helped the kiddo. Stay well all

 

[JayCS]

I'd always been joking I'm waiting for epsilon or theta, hoping it'd'll be milder, so was surprised we've suddenly jumped from the 4th to the 15th Greek letter, but: Wikipedia points to the NYT which explains "There are now seven “variants of interest” or “variants of concern” ... Some other variants with Greek letters do not reach those classification levels, and the W.H.O. also skipped two letters just before Omicron — “Nu” and “Xi” ... “‘Nu’ is too easily confounded with ‘new,’” ... “And ‘Xi’ ... is a common last name.”
So apparently epsilon and theta are there, but so mild, they haven't even been mentioned ... drat - *humpf*.
Wonder if anyone's started thinking what'll come after omega? Praps the Chinese alphabet?
BTW I got my 1st Pfizer 2h ago at 9:00 (now preferring being severely ill if nec. to the risk of hospitalization). Temperature's going up, slight nausea, tip of tongue slightly "burnt", head dull, rest too...

 

[Jemima]

I'd always been joking I'm waiting for epsilon or theta, hoping it'd'll be milder, so was surprised we've suddenly jumped from the 4th to the 15th Greek letter, but: Wikipedia points to the NYT which explains "There are now seven “variants of interest” or “variants of concern” ... Some other variants with Greek letters do not reach those classification levels, and the W.H.O. also skipped two letters just before Omicron — “Nu” and “Xi” ... “‘Nu’ is too easily confounded with ‘new,’” ... “And ‘Xi’ ... is a common last name.”
So apparently epsilon and theta are there, but so mild, they haven't even been mentioned ... drat - *humpf*.
Wonder if anyone's started thinking what'll come after omega? Praps the Chinese alphabet?
BTW I got my 1st Pfizer 2h ago at 9:00 (now preferring being severely ill if nec. to the risk of hospitalization). Temperature's going up, slight nausea, tip of tongue slightly "burnt", head dull, rest too...

Well done, JayCS. I can imagine that must have been a tough decision to make! I hope you feel better soon

 

[JayCS]

Day 2 after day 0 seemed a bit better, 1.5h activity (limit), so day 3 I thought work 1h & acupressure 1.5h'd be OK: bad idea.
Day 2-4...: pretty (aw)full flare Ache, like in the days before GABA, plus nauseous, back pain and no end in sight...
I'll have to listen to my wife as well as my body; she sees it better than I feel it. No turning back: better than hospital-risk.
Not quite like pre-GABA/supps, I can feel more energy etc., but the nausea & Ache mean I can't call on them.

 

[JayCS]

Day 6, tallying 18 side effects, off work for another week. But OK if I don't move much.
Most interesting: Healthrising (Health Rising’s Coronarvirus Infection and Vaccine Side Effect Poll: Take II) has been doing a newer, better poll since Nov 3rd, which shows that side effects can remain for over 6 months. the rough numbers haven't changed tho: Still Pfizer seems most recommendable, still most are OK fairly quickly, still a big proportion isn't. Good to hear is that maybe a quarter (I think more with ME/CFS than FM) had improved symptoms, for some or even a long time. Can't remember having read that anywhere else. Occasionally it happens that it's good after the second jab, even if it wasn't after the first. The supplements recommended by the doctors cited there are often antioxidant, most I'm taking anyway. Nancy Klimas is often cited, even by other doctors, and she, apart from "rest rest rest" which they all say, recommends "alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas."

 

[VioletsCrossing]

I came across this forum this evening while looking for others with fibro who reacted to the Covid vaccine. I received the Johnson & Johnson vaccine this past Wednesday. Within 15-minutes, I had a metallic taste that still hasn't entirely dissipated. My ears started ringing, my head felt like it was over-heating and I felt inebriated. Those symptoms only lasted an hour or so. By Saturday, every inch of me hurt and I'm struggling to stay awake. I basically feel as though I was run over a few times and then beat up in a bar fight. Wow!

 

[Edit]

Of course. You are right. For some reason I did not notice that you actually only said what country. That was certainly an oversight on my part! Most of us here do put our country of residence on our avatar profile, so it is easy to see, and I have done that as well. And many others have been willing to state age and gender as well. My mistake.

Probably most of us are still waiting to get in line for the vaccine. But you are posing an interesting question.

I am in Australia. I got my first and second Pfitzer (age 66) in september and I will have my third in January or February. I did not had symptoms only theplace of the vaccine was a little bit hard to 3 days, and I feel tired. But because I have Fibro I was not sure I am tired from the vaccine because I am tired nearly all the time. Lately the last 3 days I am extremly depressed with no obvius reason. I took my alprax 0.5 (2 tablets) because I felt so upset and tired I got a little bit better for about 8 hours and after depression come again. I anybody notice sometimes you have a very bad depression without reason? I am on 120 mg Cymbalta /day and occasionally alprax if I feel really bad. Plus my skin get very red allergic from the morpine patch, had to take and put another place. it happened a couple times but this time look really bad. Anyway I wish everybody a lovely happy and healthy new year!

 

[Edit]

I am in Australia. I got my first and second Pfitzer (age 66) in september and I will have my third in January or February. I did not had symptoms only theplace of the vaccine was a little bit hard to 3 days, and I feel tired. But because I have Fibro I was not sure I am tired from the vaccine because I am tired nearly all the time. Lately the last 3 days I am extremly depressed with no obvius reason. I took my alprax 0.5 (2 tablets) because I felt so upset and tired I got a little bit better for about 8 hours and after depression come again. I anybody notice sometimes you have a very bad depression without reason? I am on 120 mg Cymbalta /day and occasionally alprax if I feel really bad. Plus my skin get very red allergic from the morpine patch, had to take and put another place. it happened a couple times but this time look really bad. Anyway I wish everybody a lovely happy and healthy new year!

I am female 66 years old.

 

[Edit]

I forgot to tell I am female 66 years old diagnosed FB 2 years ago.

 

[Badger]

42 UK, 2 doses of Astra Zeneca last year, Pfizer booster last week. Lunchtime the day after my first jab sharp pains in my knees began. By dinnertime the sharp pain was all over, felt in muscle, joints and skin, this lasted two days. The second jab had no side effects but the booster gave sharp pains again for a couple of days.

 

[JayCS]

After a few slightly better days, with about 2h of activity, it's back down again today, feeling fluey, feverish, nauseous, by the way also things like increased esophagus blocks... A Wim Hof breath-holding exercise just helped the fatigue a bit thru more oxygen.
My wife laughed at me when I suggested I might be working again next week. I can't trust myself on that, I need her feedback.

Regarding the expert recommendations above ("alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas")
I'm also adding all 4 antihistamine things I don't yet take and am research-searching...:

Histamine (not necessarily cytokine/autoimmune) connection? - up & beyond the forefront of research once again...

1. ALA, also added pine bark, ~5x at night, so it's away from all food. Tonight showed that that improvement hasn't held.
2. luteolin is in broccoli and someone had suggested raw broccoli anyway, so I'm starting that.
3. theophylline is in cocoa beans, i.e. I'm eating a bit more dark chocolate (70-80% cocoa), but actually cocoa contains amines similar to histamine too....Now I understand why Klimas says tea, and not dark chocolate.
4. Yesterday I discussed histamine with my GP and also mentioned it to my cardiologist (who checked that my heart is OK) because of the skin burning & itching and the histamine connection in the jab-sfx list: As antihistamines increase tiredness we dropped the idea of taking them, but he offered to check a histamine enzyme called DAO, which could if necessary be supplemented. And that's the 4th piece of the puzzle on the list above I was missing, I hadn't been able to find it to buy...
5. As he mentioned antihistamine food I've had a look: My heart sunk seeing it in the radical form means stopping a lot of my main nutrients: nuts, soy, olives, dry fruits, chocolate, gluten & yoghurt. I'd meagerly only be left with veg, apples, gluten-free muesli/bread for 2 weeks, and could then slowly add some nuts...
6. I also asked about the ibuprofen my wife was urging me to try, but he reminded me of the GI complications with that and diclo, suggested aspirin as NSAID instead. However it's on the histamine negative list along with many other meds....
7. In the evening I had another esophagus block upon starting to eat (almost daily at the moment), reminding me that histamine may be related to eosinophilic esophagitis (EoE). I never seemed to fit, but another pointer to histamine.
   Spoiler: Maybe irrelevant offshoot: important details about cytokines (broken down a bit)...

   8. That research-search also brought up the cytokines IL-4, IL-5 and IL-13 being secreted in one EoE-study - reminding me of cytokine changes as a FM-biomarker (e.g. used by Gillis in his daring so-called "FM/a test"). Looking those 3 up showed an FM-study with those reduced. Cytokines have always got me confused, so at last I've now clarified: IL 6 and IL-8 belong to the pro-inflammatory ones and may be too much in FM, whilst 4, 5 and 13 belong to the anti-inflammatory ones and may be reduced. However this is all not well-proven, the studies are too small & hard to compare. (So Goebel's autoimmune study in July/Aug21 found a different / more complex possibility using IgG directly). (IL stands for interleukin: -leukin as in leukocytes, the white blood cells, which are responsible for immune defense, and were originally thought to be the main producer of interleukins.) Looking up EoE and FM, a page on redorbit on an easier level suggests the cause connection is via GERD (which I have under control), plus autoimmune factors (= the above) and as treatments corticosteroids, which is out of the question, and a proton pump inhibitor plus elimination diet for the hyperacidity, which is unncecessary.
   9. But what have vaccines and cytokines got in common? CoV itself can cause a cytokine storm, i.e. increase pro-inflammatory cytokines, like IL-6, - but vaccines don't, but not saying that they can cause too little cytokines. Wikipedia suggests that that means pro-inflammatory cytokines, esp. IL-6, and under "research" that taking nicotinamide (B3, niacin) and magnesium can help. Magnesium I'd reduced a bit of late and B3 I'd stopped cos I wasn't sure of it and the itchy flush was annoying. (NSAIDs also help according to one study). But it's not evident that my jab-sfx are due to too much IL-6 etc.
   10. Specifically looking for decreased anti-inflammatory cytokines like IL-4, -5 and -13 in vaccines I've found a German/Dutch study, 2021, on europepmc "The BNT162b2 mRNA vaccine against SARS-CoV-2 reprograms both adaptive and innate immune responses", via news-medical.net. It expands the obvious that vaccines change the immune system - actually nothing vaccine-critical, altho used that way. It's pre-print, so not peer-reviewed yet, but 23 researchers involved and reading thru the "whole" study any obvious flaws aren't visible to me. Also on ScienceImmunology from Jun21 "COVID-19 vaccine side effects: The positives about feeling bad", suggesting that it's very increased anti-inflammatory IFN-1 which causes a lot of the immediate sfx in young females, as opposed to what they say in the introduction "As with other vaccines, these effects can, on rare occasion, be the result of delayed-onset, local allergic reactions."

So: The apart from as yet unclear immune modulation, the vaccine like all vaccines seems to increase histamine in a belated allergic reaction (may be associated with EoE, if I have that at all). So continuing the histamine route,

1. the DAO blood result and if decreased taking the enzyme might help,
2. a low histamine = histamine elimination diet for 2 weeks might be worth the effort. I'd need a dietitian/nutritionist mid-term tho. Seems the diet wouldn't increase tiredness like antihistamines do.

Something overdue, should've skipped the cytokines and scanned around for histamine intolerance symptoms, because...:

All the flu-like and similar-to-fibro symptoms fit…:​

Also the bouts of feeling well.
Skin: itchy, burning, showering & therapy very unpleasant.
Fatigue: exhaustion, exhaustibility, movement, short breathed, stiffer.
Chronic pain: ache from too much movement, sore muscle, e.g. in backside sometimes.
Fluey: Congested nose, sore throat, feverish-feeling, headaches sometimes.
Cold/heat: Usually cold, but then very suddenly terrible heat.
GI: Nausea. Esophagus blocks (similar to eosinophilic esophagitis).
Only thing I can’t find is my burnt tongue (unless “burnt mouth”) or seizures (rather caused by antihistamines or low levels of histamine) on the first days.
OTOH 4 symptoms I hadn’t seen before are the strange bouts of feeling well, the congested nose when I feel “histaminey”, the sudden bouts of overheating and the increased & changed esophagus blocks while eating. (Almost 30).

Edit: My GP agrees it looks like histamine intolerance, but I should just wait for the DAO blood result.
A low histamine diet would reduce my quality of life too much (seeing as I can already only eat 20% of what others can).

 

[JayCS]

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...