Covid-19 vaccination experiences

I had Bell's Palsy following chickenpox aged 5. Mine never recovered. Had 2 ops later as was desperate; 2nd was rather experimental, and left a swelling of the right side of my face.

 

Had my first shot end of April (Biontech).

Side effects

- More headaches (my worst and most debilitating of all ME symptoms), returned to previous baseline after approx. 3 weeks

- Flu like feeling in top of the usual one (pain in skin and bones, little shivering) for 2-3 days.

- jab arm hurt a lot and by that I mean the joint and ligaments. There's still some of that left when I lift it. I'm hypermobile, especially in that left arm (dislocations), so I dont know if that might play a role in it.

Today 2nd shot. Will update.

Edit to add: The doc there said 2nd dose Pfizer often comes with more side effects, so I'm prepared for some harder days. Thankfully it's not too hot atm.

 

I had my second dose of AZ three days ago. After my first dose I enjoyed a few days of increased energy and mental clarity - as some others have reported - as well as fairly minor negative side effects (raised temperature, neurological pain etc). Interestingly after this second dose there was no notable boost in energy - mental or physical - and the negative side effects were much less. Both doses were administered at home. Since I had suspected Covid in December I have had a deterioration in ME symptoms/Long Covid and have been virtually house-bound. My surgery has been pretty supportive.

 

I also had my second Astrazeneca vaccine, after three months. Me: mild/moderate, in my 30s.

I had quite strong but otherwise normal side effects with the first vaccine the following day. People say that the second AZ shot has only very mild side effects but for me this wasn't the case: I didn't feel feverish this time but apart from that I had the same side effects as with the first one: brutal headache, feeling cold, quite painful arm after vaccination, feeling very weak and fatigued and generally quite unwell and useless. Again, this happened after vaccination and the following day.

However: I always have a strong reaction to vaccines (since having ME/CFS). I know because I get the flu vaccine every year and I always get a stronger reaction (once it made my ME/CFS much worse for a week but otherwise my illness isn't usually affected for more than maybe 1-2 days).

Anyway: if you are like me with a history of strong reactions, be prepared that the second AZ might have a stronger than expected effect too.

 

I had my first AZ dose in March following covid in December. First dose I experienced a range of symptoms most of which resolved in 3-4 days with the exception of the sore arm which took 6 (reported earlier in the thread).

2nd dose was 2 weeks ago today. No side effects at all, not even a sore vaccination site. I could just about find the site the next day if I pressed hard in the general area, so quite different.

 

2nd dose today (Astra Zeneca) so I'll report on how I get on, however recently I've had to do more than normal so my 'normal' ME issues might be harder to screen out.

 

30 hours post jab and I can't, so far, identify any adverse effect (hopefully not famous last words).

 

So, i go for my 2nd AZ dose tomorrow. I was supposed to have it last thursday but on wednesday i had a major plumbing emergency & have had to "sleep" on the settee the last 4 nights. Am heading into a PEM crash in the nxt couple of days, but they cant do an AZ dose in my area for a while after tomorrow, & so postponing again risks me either going over the time limit for between-dose-efficacy, or having to travel an hour to get it which will put me in a worse crash anyway. So i dont have much choice.

I had a pretty horrible side effects to 1st dose, & i was very well rested before having that, so if anyone prays... pls do
the rest of you pls cross your fingers & toes for me that it wont be anywhere near as bad this time, despite the crash that seems inevitable

 

fingers crossed for you @JemPD.

 

Mine too. Although I did react to AZ2, I found it easier to manage because I had gone through the process and similar and worse reactions before after AZ1. It helped me stay a lot calmer.
Good luck @JemPD

edit:: for clarification

 

Just got the Johnson&Johnson vaccine on Thursday. No side effects, not even a sore arm*. I have severe ME/CFS.

The last time I got a vaccine -- the DTAP-- was in 2011, and it did elicit a marked flu-like response (fever, malaise, etc.) that lasted for a few days. Since then I have declined to be vaccinated since I'm completely homebound and, thus, my exposure to, say, the flu is very low. But if I did get the flu, it's something I'd probably be able to manage at home. While my risk of exposure to COVID is also very low (the few people coming in and out of my apartment are almost all vaccinated--my young nieces would be the only exception), my risk of being hospitalized should I catch it is not insubstantial. Thankfully this vaccine didn't cause any problems!

*Technically there is still the 1 in a million chance I could develop rare clotting issues over the next week or two but, well, that seems...unlikely.

 

Going for my second shot of Pfizer tomorrow. Had a (extra) grim lengthy period before shot one, so it really can be hard to tell what’s what. Had the slightly sore arm and a little headache for a day or two as the immediate usual side-effects. But then experienced even more immunological things after shot one, maybe you could say more of the ME immunological things. Lasted for approx 3,5 - 4 weeks before stabilizing back to some sort of baseline.

So I guess I had quite a powerful immune response, but as already pointed out, it’s not always easy to know what’s what when a hard PEM-state and immunological stuff is your day to day baseline. Looking forward to shot two with curiosity, and then move on from this COVID-mess.

 

Good luck Peter.

 

Thanks.

Not sure if it makes any sense, but if so, it would be nice if someone "out there" did a study on ME-patients and this world-wide mass-vaccination, to see if that could give any clues to what’s going on with the immune system. I don’t know, but if there is one positive thing with this pandemic, it must be the many opportunities to do good proper science that also include ME-patients and could benefit them. If that is happening is a whole other question.

 

Good luck to all and sending love xx

I still have not had my shot, as I am housebound anyway and don't feel I have the extra leeway for a negative reaction. I am barely managing (am now severe) after getting suspected covid last March. I am thinking about reaching out to my GP for advice, but what can she say? I would only really leave the flat in an emergency - but that is how I got covid in the first place! Don't know what to do but seems okay to wait for now (I hope). I get help from family but they are very careful (and vaccinated). If I get worse I'd have to move, as I live alone. Is anyone else in a similar situation?

Thanks for posting all of your experiences!

 

@Ariel

I understand and relate to your situation.

My GP strongly advises I get the vaccine even though I've been sick from a possible Covid exposure early last year. I think 99% of GP's will advise that you get the vaccine.

I have not been vaccinated yet and cancelled my MRI appointment because I don't want to be exposed. Do I wear a mask in the MRI unit? How claustrophobic would that be?! So there are a lot of issues that might arise where you might need to go out, so getting vaccinated is very important.

How severe we are with ME does not appear to predict who will have a negative reaction to the vaccine. I plan to get vaccinated, hopefully soon when I get a home visit.

 

Not if it's got any metal in it, such as the nose brace, which most masks have.

Being exposed is however a 'normal' part of an MRI, at least here where the procedure is strip, put all your clothing, possessions, money, ID, house keys, etc in a non locking cupboard in a public area, put on a gown which only fastens at the back but doesn't have useful length ties anyway, then wander through the hospital, across a car park, and into a raised portacabin where they keep all the loud wizzy things and get deafened for 20 minutes or so.

The NHS, putting patients first, and all that.

 

I guess I was just thinking that I do not go out (I can't, really). I realize that eventually I may have to in some kind of emergency. I do not see anyone except my masked family occasionally who help out when I need it. I doubt I have much protection from having had covid. I would like to feel like I could "afford" to have a setback, as many people are having longer-lasting effects. I feel I don't have a safety cushion of activity at all.

I would feel differently if I was going out doing anything (or if I was able to), or living with/seeing people. I am just hoping to be able to get it done when I feel a bit better - also at a time where rates are not rising. It seems like a bit of a lottery as to who will have significant setbacks; I also doubt it's related to severity.