Covid 19 Vaccination with FM/CFS

[JayCS]

Hi there - very nice to have a SunnyDay here!
I'm also wary of the shots, considering my oversensitivity, so I'm even thinking I may prefer getting delta or better epsilon if need be - so can't help you there, but feel with you.
But I wdnt see dry cough and praps not "heavy" breathing as fibro symptoms, even if they arose then. Plus they don't sound as if they'd nec get worse with CoV. Have you had your lungs checked if you really believe it it your lungs?
A painful dry cough is something I got whilst taking amitriptyline, so it only seemed to be appearing with fibro. Might some med be the cause?
And heavy breathing is something I still sometimes get thru overexertion, esp. of the arms, since fibro. Usually better now: Have you tried getting your shoulders and rib-cage treated manually (e.g. osteopathy, acupressure), or gentle, short but regular exercise, e.g. yoga, tai chi (praps lying down)?

 

[Jemima]

Reporting back after second Pfizer shot, which was on Friday. No side effects at all for me. I hope more of you experience the same!

 

[kathybird]

I had the Moderna vaccine with no problems, but I did have Covid AFTER the vaccine and did experience a flare up after Covid!! Ugh!!

 

[Haze]

53 Australia fm and menopause. I
Pfizer 1 sore arm, then sore shoulder, then my ear started to ache, ear still hurting neck and jaw now ache. I went to doctor she told me my lymph glands were swollen which is a Pfizer side effect. No ear infection. Then my mouth and teeth got sore. Went to dentist everything good. Dentist had others come in with similar complaints. Then the side of my breast felt like it was burning. Most of these symptoms lasted 24/48hrs in each place it was like it was travelling through my body.
2nd Pfizer 4 weeks later all other symptoms gone apart from sore ear. Decided to get second shot. As soon as I got it I felt a funny feeling in my tummy and weirdly the ear ache went away! Home I was ok that night but as soon as I had breakfast I felt pain in my stomach and nauesa. This lasted 6hrs. It was like I had a gastric tummy bug or stomach colic. During the next week I had this pain after eating twice more each time after I ate! 16 days later my stomach still isn't right I'm still getting nauesa often! I also got a sore tongue and mouth for a few days.

There has been a covid outbreak in my town started last week. I do have post nasal drip so get a sore throat often. Yesterday there was an alert for a supermarket that I visited at the same time as a covid positive person visited. I went and got a covid test! Last night lots of nauesa in tummy and hot flushes. Took my temperature twice no temp, throat still sore. So im isolating until I get results.

Also I restarted Endep 25mg after I visited doctor after 1st shot. I have had it before with no stomach issues so I'm pretty sure its just a
coincidence that I happen to restart Endep after first shot and it's the vaccine causing nauesa but I could be wrong?????

 

[JayCS]

I'm still wary of getting the shots and at least waiting till I've got more to grips with my debilitating symptoms (which might be the case soon, esp. after starting on NAC, ribose and praps the serrapeptase).
But I found a helpful resource for supporting decisions last week: the FM-sufferer Cort Johnson on his healthrising-site did a big poll for vaccine-effects of people with FM & CFS at the beginning of this year and then another around March/April for those "severely ill", i.e. for those debilitated to a large extent (functionality of 30 and above).
This helps me a bit more, as I have a functionality of 30 and 40, depending on the area of my life, as well as having extreme oversensitivity to everything I use, incl. meds, supps, herbs, physio and food.
His conclusions made after a short time the poll was running was optimistic. When you look at the now resulting numbers tho, you see that - depending on the vaccine and the shot - 20-30% of sufferers had severe sfx and 20-30% for >30 days. Now this doesn't allow to know if maybe the sfx stopped after 35 days, or if they were severe for the first 10 days and then lessened. But it suggests to me that I personally will very likely have a rough time if I take it, chances are a similarly rough or even rougher time than getting CoV itself, e.g. will be ill and on sick leave for a few months and have a major setback in my progress.
That said, two suggestions he makes on the basis of the poll results remain very helpful, despite the results having become less favourable in the course of time: Firstly, Pfizer is likely best for us. Moderna 2nd best. AZ and J&J by far the worst. Secondly, in the case of Pfizer it might be viable to try the first shot and make a personal decision based on the sfx of that one. The cut-off his poll makes on the sfx of the 1st Pfizer is 14 days, whatever that may exactly mean, but obviously confirms that the 1st shot had less sfx for 'everyone', like we already know, than the 2nd.
Reading the most recent comments from end of September shows that he is answering someone from Germany - not me - about doing a new poll with certain more details, similar to my questions/doubts. Which wakens hope for further helpful results, but also shows that it is not a scientific poll, Cort did it himself. Not that a poll being 'scientific' impresses me much, seeing as medicine is often funded by pharmacy... But my impression from the whole website/blog is that he is a "good guy", and carefully reflecting, deliberative and balanced, and the whole site is a well thought resource - please correct me, if you find anything that puts a shadow on that...
Let's try to come back to his 'new poll' once it's published. Or if you find any similarly detailed resource.

 

[Haze]

When I got my vaccine we only had two options where I live Astra and Pfizer and even Pfizer was hard to get because so many were worried about AZ.

I personally chose Pfizer as I felt it has less side effects for my situation. Yes I had side effects and yes I'm still not well from my second. However if I go by what my doctor and even the dentist has told me the side effects are a good thing because it means my immuine system is working really well.

I did say when I was ill the day after my second vaccine that I won't get the booster. However after just having been in a supermarket the same time as a covid posative case. I got tested and im negative. I think I will get a booster if required!

 

[nikkozoo]

Got the Pfizer booster shot yesterday, along with my flu shot. Figured I would get the pain all over with at once. Both arms extremely sore, entire body hurting, feels like I got the bad end of a boxing match, chills, headache, cramps in feet and legs. That being said, booster after effects not as bad as the second vaccine shot which had all of the above and more and extreme lethargy, spent three days in bed. So, I guess this is a positive. Took an alleve for the discomfort. I guess I would call this a win?

 

[nikkozoo]

I had a reaction, similar to a bad flare, with severe body aches, extreme exhaustion, headache which lasted approximately 5 days, 3 of which were spent in bed. I am from the US, age 70. Also, got the phizer booster 4 days ago, much milder reaction. A little tired, some body pain. Yesterday, developed covid arm, didn't have this with the first two shots. Redness on arm, fairly large area, not exactly near injection site, itching, uncomfortable. Apparently, this is a immune system reaction and should go away on it's own without treatment.

 

[Rainbow]

Hi again everyone - does anyone have any feedback as regards Shingles Vaccinations for the likes of us?

I ask as I've been informed by text by my G.P's surgery that I'm 'eligible' for one, so am told to ring & book an appointment
but am fed up of needles & feeling poorly after vaccinations etc.
Plus, I had Chicken Pox as an adult, albeit decades ago, which am hoping may give me some level of Shingles immunity (?)

And no, I can't ask my doctor about it, as it's near impossible to reach a doctor here in England.
In fact, it's almost impossible to even reach the doctor's receptionists,
who are all 'Gatekeepers' clearly strictly ordered to let no-one through under any circumstances.

Though IF you can get through to the Gatekeepers (it took me weeks & then over an hour in a queue to achieve that last time I tried)
& IF it's considered serious enough, a phone consultation can be booked for weeks ahead,
or a 'Phone App Form' (whatever that is but it doesn't matter as I don't have that kind of phone)
can be sent via the Smartphone I don't have, for me to fill in & return to sender.

So I need to know from those of you in the same boat as me (it's called The Titanic) if you yourself
have had a Shingles vaccination & if you have had one, how you felt after it?

Thank you in front!

 

[sunkacola]

So I need to know from those of you in the same boat as me (it's called The Titanic)

This made me laugh........thank you for that!
I wish I had info on this one, but I avoid vaccinations myself. Except for the covid vaccination, which I got as soon as I could.

 

[Jemima]

Hi again everyone - does anyone have any feedback as regards Shingles Vaccinations for the likes of us?

I ask as I've been informed by text by my G.P's surgery that I'm 'eligible' for one, so am told to ring & book an appointment
but am fed up of needles & feeling poorly after vaccinations etc.
Plus, I had Chicken Pox as an adult, albeit decades ago, which am hoping may give me some level of Shingles immunity (?)

And no, I can't ask my doctor about it, as it's near impossible to reach a doctor here in England.
In fact, it's almost impossible to even reach the doctor's receptionists,
who are all 'Gatekeepers' clearly strictly ordered to let no-one through under any circumstances.

Though IF you can get through to the Gatekeepers (it took me weeks & then over an hour in a queue to achieve that last time I tried)
& IF it's considered serious enough, a phone consultation can be booked for weeks ahead,
or a 'Phone App Form' (whatever that is but it doesn't matter as I don't have that kind of phone)
can be sent via the Smartphone I don't have, for me to fill in & return to sender.

So I need to know from those of you in the same boat as me (it's called The Titanic) if you yourself
have had a Shingles vaccination & if you have had one, how you felt after it?

Thank you in front!

Hi Rainbow,

I don't know much about this vaccine for fibro sufferers, but can say that shingles is caused by the reactivation of the herpes zoster virus - the virus that also causes chickenpox.

We carry these viruses in our bodies for life once we've caught them. They just become dormant, unless our immune system become weak, which is what would trigger shingles. So having had chicken pox just means that you can get shingles in the future - there is no immunity offered, because we carry the virus already.

Getting a shingles vaccine might be worth considering if your immune system is weaker, as it can prevent an attack or reduce its severity - which is why it's offend to seniors in most countries.

My mum had shingles when I was a kid and got incredibly ill. Her doctors didn't realise what it was until very late, at which point it had become quite serious. But, it isn't always so complicated and is treatable to some extent. Untreated shingles can, on occasion, leave a person with lasting chronic neuropathic pain - so that would obviously be something fibro sufferers would want to avoid! The vaccine aims to prevent that.

I hope that helps!

 

[JayCS]

Shingles vaccination & if you have had one, how you felt after it?

Hi Rainbow, after reading your question I came across someone having read Jacob Teitelbaum's take on it.
He had reacted more negatively when it was "the old vaccine". She reached out to him and he answered that he finds the new shingles vaccine "reasonable". She decided to take it, despite not being "a pro vaccine person", but didn't follow up whether she did or not.

You can still find the original screenshot of that with the phrase-search (quotation marks) "should cfs or fibromyalgia patients get the shingles vaccine" (not on vitality 101). At that time he answered he is "not quick to offer the shingles vaccine in chronic fatigue syndrome (CFS)" (no mention of FM in that text, only in the title.).
You can find his more recent take on it via "(Do you recommend the) shingles vaccine teitelbaum" on his vitality101 health blog:
"By itself, CFS does not leave me recommending against them. A history of severe reactions to vaccines or perhaps other immune issues might leave me discouraging them."

 

[nikkozoo]

I never had chicken pox. Spent an entire summer baby sitting as all the children in the neighborhood got it. My mother-in-law got it very bad, ended up with neuropathy in her arm afterwards. To my surprise, I got it also. My doctor explained that they are now finding that some people who never had chicken pox can still get shingles. I have to schedule a shingles shot, but with a recent kidney stone attack, surgery, booster covid reaction, now severe chest cold, holding off on that a bit, but will definitely get one. It can be extremely painful and debilitating if you get it, you don't want to get it.

 

[Artgirl]

I did have the Pfizer vaccination and had no effects. I am a female, 69 and live in the US.

 

[ahaze]

I just had my first dose of the Moderna vaccination a few days ago. I am a 50-year-old female living in the US. The site where I received the vaccination is still extremely sore. The day I got the jab went something like this: I got the shot at 1:30pm, by 8pm I could hardly move my arm and woke up at 1:30am with hard chills and nausea. This lasted the rest of the night, but eased by the time I had to get up around 8:30am. I was completely exhausted all day. Around 6pm, the chills returned but not as bad. As much as I hate to spend much time in bed, I did spend much of the time in between resting and sleeping - it was the only way to fend it off. Thankfully I was off work. I now am worried how my body will respond to the second dose.