Covid-19 vaccination experiences

Multiple calls to GP clinic plus 1 trip to them
2 trips to A&E
1 day in local hospital ward

I introduced them to the idea of possible blood clots. It wasn't that anyway (but they still should have known)

No follow up or interested in my on going problems (which are nothing like ME)

I think we may see another group of people emerging with a post vaccine syndrome of some sort. Just been very unlucky to get this now on top of ME.

 

Received my first vaccine dose today, Astra Zeneca variety. I'll try to remember to post updates about any reaction, or otherwise, to it.

 

Because there have been few reports so far from ME patients and their reaction to the vaccine: Covid vaccine and CFS. Overall seems not bad, about 70 or so responses so far.

I don't remember it being it linked but HealthRising did a poll and they received over 1K responses: https://www.healthrising.org/blog/2...ll-chronic-fatigue-fibromyalgia-severely-ill/.

 

This is so weird...............the variability of our reactions.

At first I didn't want to write much about my reaction because it was so alarming. I had severe reactions for 8 weeks after AZ1 but am doing well after AZ2 which was 6 days ago.

I reacted with throat swelling about an hour and a half after vaccine 1.Very frightening. I had a rescue plan - antihistamines helped down by yoghurt- epipen ready but had to decide whether to call 999, 111, or even go back to the vaccine centre where my GP was which was 5 minutes away. In the end, after taking anti histamines, decided to breathe slowly while looking at garden which kept me most relaxed and it eased after an hour or two. It recurred 2 days later, and then six more times in the following 8 weeks. My GP diagnosed these as mast cell reactions. I had phone appointments with immunologists and filled in yellow card.

As well as that I had a myriad of other symptoms- mostly of the skin and respiratory types, and felt ill and utterly exhausted and suffered severe joint pain.

I was very, very hesitant about the second vaccine but had it in the end, only deciding to go ahead the day before. So different after vaccine 2- I felt normal apart from a few symptoms: one episode of mild throat swelling on the day and migratory pains of the sort I had a year and a bit ago when I had anaphylaxis, are still occurring. I had no arm symptoms, not even a sore arm, with either dose. My reactions seem to be more of the mast cell type. I think I read somewhere that in the US, they are studying mast cell reaction to Pfizer and Moderna. Link added. I could not find anyone studying ME reactions to vaccine in US but Dr Klimas offered advice. Link below.

That's it. I don't know if I can face an autumn vaccine. My priority now is just to calm down and try to enjoy one or two things.

https://www.nih.gov/news-events/new...ons-moderna-pfizer-biontech-covid-19-vaccines

https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html


So sorry at what you are going through @ukxmrv .

 

I had the SECOND shot of the Pfizer vaccine yesterday.

The effects of the FIRST shot were unremarkable. Just the usual thing of pain developing deep inside the shoulder, although it was possibly more intense than usual - like the after effects of someone punching you in the shoulder hard with their fist. The pain certainly was not located where the needle broke the skin, but deeper inside.

The SECOND shot was the same to begin with but, when the sore shoulder developed hours later, it felt more like a "ragged cut" deep inside the shoulder. Nothing too bad, really, but different.

However, I woke up last night with a "ragged" burning sensation in both arms from my shoulders to my wrists and a similar sensation across my chest. I suppose this might come under the heading of "muscle pain," which is a known possible side effect of the vaccine.

The odd thing is that I have had a low level "sunburn-like "sensation in my arms and across my torso ever since I first got ME, almost 40 years ago. I've just simply learned to ignore it. So it was strange to wake up last night with this sensation at a much more intense level. My temperature was up to 100 F (37.8 C). I've never before had an amplification of my arm pain like that - not from any vaccine or infection.

The arm pain has diminished somewhat now, but I wonder what could be behind this. Did the immune response to the vaccine amplify whatever process causes the pain in my arms, or did it make my brain more sensitive to it? It could just be a coincidence, but it makes me wonder if the long-standing low-level pain in my arms is driven by some immune process that was amplified by the shot.

I assume the arm pain will return to its normal level, so I don't see this as any reason to avoid the vaccine regardless. I just find it interesting.


ETA: Temperature reached 101F (38.3C) yesterday (the day after the shot), but is back to normal now. Still some headache, but the pain in my arms is back to normal.

 

I had exactly the same experience as you @Forbin from both doses of the Pfizer vaccine. Really bad muscle pain in the injected arm for several days, but slowly improving as the days go by. But I did have an exacerbation of allodynia all over my body with more shooting pains than usual. Even washing my hands hurt as did my clothes moving on my skin.

I also wondered what the underlying mechanisms were and that the vaccine just heightened whatever is usually there.

 

I got my second dose of pfizer on Tuesday. Strangely, I actually slept better that night than for days . Still doing fine but the next few days may be the test.

 

24 hours after, definitely feeling coldy/flu-ey, including headache and less energy than normal.
48 hours after, as above but less so.
Almost 72 hours after, seems to be same trajectory, as above but even less so.

So, fingers crossed, I've got away with a very mild reaction.

 

2 weeks since first Pfizer dose.

3-4 days with classic symptoms like arm pain, extra fatigue, headache, chills, sore lymph nodes. Insomnia the first night. Neurological symptoms + brain fog was better for a few days.

Still present: lowered blood pressure. Bloated with abdominal pain. Increased joint pain.

A few peculiar symptoms: strange taste in my mouth, hoarse, dry mouth, very thirsty - drinking 5-6 liters a day. Waking up several times at night. Vivid dreaming/nightmares.

 

Wouldn't it be helpful if people gave their ages, and perhaps genders? These seem to affect the reaction.

 

Female just turned 67, ill for 53 years . I am still fine, though my ME is so variable maybe I'm not. I had 3 nights of migraines, but then that is not unusual as they come in groups then go for months. When the rest of the family have had flu I've never known if I had it too or if I just felt bad because I was having to do things my husband usually does like get food so it may be like that with the vaccine, or it hasn't taken or I am just lucky.

It is hard to know what to do for the best as we all react so differently.

 

Moved posts

Has anyone had increased fatigue/ weakness and/or OI for several days after your vaccination? Of course this is complicated by crashing after going out to get your vaccination, but it's been a week now for me, and I'm just wondering, as I don't usually crash for a week. And, hoping I get back to my normal ghastly level soon.

 

Just wanted to reassure you @DokaGirl
For 8 days i felt dire, i was over the 'fever/obvious side effects after 5 days but then felt extremely queer - very spacey, weaker than usual, & able to stand for half the usual time feeling extremely sick & dizzy, my temperature even went up a bit again. I was a bit concerned. But in the afternoon of day 9 (today) it just cleared & i feel much more my 'normal' terrible, which is a relief!

 

@JemPD thank you very much. That is good you are back to your normal terrible self. I do feel hopeful, and you have helped me feel more hopeful that I will be back to my normal terrible self soon, as well.

 

I had my first Moderna shot 10 days ago. The first three days I was fine; arm didn't hurt and as far as I could tell I had absolutely no side-effects. However, since Day 4 I have not felt well at all. I'm very tired and feel like I am coming down with something; like how you would feel when you are coming down with the flu. I don't have a temperature or any aches and pains. At first I just assumed that I had a bug, but after taking part in a research survey being done with the University of British Columbia, I realized that my symptoms were probably related to the vaccination. My brother has since told me that he was really tired for several weeks after having the Pfizer vaccination, and I was talking with someone else who had the Moderna vaccine and she hasn't felt well for several weeks now either. All three of us have autoimmune disorders, so I don't know if this is a factor or not?

 

@TigerLilea

I'm sorry to hear you're not feeling too well. My sister has Hashimoto, and felt fine after her first dose of AZ vaccine.

It appears that symptoms are mixed for everyone across the board.

The J&J vaccines are arriving in Canada this week. This is the one I want, but will have to wait until my viral infection subsides.

 

Just short of a whole week after my first jab and I think I'm completely over any after effects, so I think I'm definitely in the mild reaction camp.

 

I just wish they'd hurry up and release some more slots for my second jab: the only ones they've been offering since last week have been one morning which I absolutely can't manage

And while I think of it, some more details on side-effects of the vaccines - and the ones you need to see a doctor about:

https://www.msn.com/en-gb/health/me...right-away/ar-BB1g6GDa?ocid=ASUDHP&li=AAnZ9Ug

 

I have an appointment for an AstraZerneca shot in a bit over an hour, just booked it a bit over an hour ago. I first have to show I am in the priority group, so we will see. I hope to keep you informed, maybe belatedly if I crash. Very few places, but . . . one of the places is at the other end of the block I am on, a five minute walk. I think I can handle that.

PS I just took some NAC, alpha lipoic acid and CoQ10. Other things might help but I do not have any on hand.

PPS Rather than fill this thread with comments I will keep posting till I recover in this one post, with one line comments hopefully.

28 April. Just got vaccinated, arm fine after five to ten minutes. Now its wait and see.

5 hours later I woke up from a nap and feel like I do before coming down with something, but very tolerable.

29 April About 20 hours after the vaccine I started getting chills. In the last four hours I have moderate flu like symptoms, including some chills and some feeling hot, with a very mild headache and generalized pain that is not very severe but in lots of places. Going to try to nap again now.

30 April Most vaccine symptoms improving, but not over it yet.

1 May I just realized I have hardly been eating, loss of appetite is one of the symptoms. I feel like eating now, so it only lasted less then three days. Otherwise still improving. At some point I may have trouble telling between residual vaccine symptoms and ME symptoms.

Doh, some of the fever and chills are coming back. Not bad, but its annoying its not going away just yet.

2 May I have moved from sleeping a lot to my usual sleeping hardly at all. So I am guessing the run of vaccine symptoms is either over or almost over. This might be my last entry, unless things change. So that makes it about four days. Remaining symptoms are within my ME range.