Covid-19 vaccination experiences

— still unsure if this is the right thread —

Update, day 8. Still more exhausted than usual and more than pre-1st shot. Legs are unusually recalcitrant; I shuffle unless I make a conscious effort pick up my legs. I’ve had a slight improvement starting yesterday (which was day 7). Assuming this is a reaction to the shot and not the 4-point local trip, it is unlike any other vaccine aftereffect I’ve had since getting sick. I shrugged off all the others.
 
Mij said:
I don't want to create more work, but should we start a new thread for post-vaccination experiences?
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I think it would be helpful to know how people with ME have fared after vaccination. My daughter told me she had heard that people with ME had got ‘flares’ with the vaccine, but I brushed it off. I’ve had flu jabs with no ill effects before.

I had the Astra Zeneca vaccine 1st dose last weekend. I’m sorry to report I became quite poorly in the night afterwards. Temperature spiking to 39 degrees which lasted about a day. Continued to spike up to 38 the following day.

I am still feeling quite poorly seven days later. My legs feel stiff and heavy and painful. It reminds me of how I felt when I first got ME, 8 years ago. It’s like PEM but a bit more somehow. I also feel I have the chills in my blood on and off which is new and feels ridiculous to write.

I wish I wasn’t saying this as I wouldn’t want to put anyone off having the vaccine. I hadn’t heard of any reactions like this so it was totally unexpected.

I would also still get the vaccine but I might choose Pfizer if I could choose. My very simplified understanding is the mechanism is different Pfizer doesn’t actually give a dose of covid.

I had what I’m pretty sure was covid about a year ago. My temperature never went as high as it went with this vaccine reaction. In fact I can’t remember a time when my temperature has gone as high. I’m hypothyroid and always thought my temperature stayed low due to that, even when I’ve had infections.
 
Hi, update, had a very difficult few days after the vaccine. On the day I was just more tired so I thought not much is happening. But the next day, shivering. Became feverish, hot but then freezing cold, heat pads constantly, couldn’t eat.. wasn’t helped by me exerting myself with an email. Also sharp increase in all over body pain as well as sensitivities. Severe migraine. I just felt more ill. Of course my arm where the jab was, hurt a lot. The pain and sensitivity has come down very slightly now. But still more ill. Today is the 5th day.. I’m still struggling to eat. Haven’t eaten “properly” (I mean, as much as I was eating before, which wasn’t much) since the vaccine. Still only able to eat /drink very little as I feel like throwing up. I hope it gets better. I’m sure it’s still much better than getting covid though so I’m still glad I had it.

Not looking forward to having to get booster jabs / new vaccines for new variants which the AZ doesn’t protect against. desperately hoping that at some point the U.K. goes for proper elimination strategy instead of their current thing, I’m scared about having to keep having new jabs.
 
I'm sorry to hear you're having such a hard time with the vaccine reaction, @lunarainbows. My daughter had a similar, though less extreme reaction that lasted a week or so - very sore arm, fever, bouts of shivering, headache, etc. Now 10 days after the vaccine she's not completely back to her normal severe ME level, but gradually improving. Still better than taking the risk of getting Covid.
 
Maria1 said:
I think it would be helpful to know how people with ME have fared after vaccination. My daughter told me she had heard that people with ME had got ‘flares’ with the vaccine, but I brushed it off. I’ve had flu jabs with no ill effects before.

I had the Astra Zeneca vaccine 1st dose last weekend. I’m sorry to report I became quite poorly in the night afterwards. Temperature spiking to 39 degrees which lasted about a day. Continued to spike up to 38 the following day.

I am still feeling quite poorly seven days later. My legs feel stiff and heavy and painful. It reminds me of how I felt when I first got ME, 8 years ago. It’s like PEM but a bit more somehow. I also feel I have the chills in my blood on and off which is new and feels ridiculous to write.

I wish I wasn’t saying this as I wouldn’t want to put anyone off having the vaccine. I hadn’t heard of any reactions like this so it was totally unexpected.

I would also still get the vaccine but I might choose Pfizer if I could choose. My very simplified understanding is the mechanism is different Pfizer doesn’t actually give a dose of covid.

I had what I’m pretty sure was covid about a year ago. My temperature never went as high as it went with this vaccine reaction. In fact I can’t remember a time when my temperature has gone as high. I’m hypothyroid and always thought my temperature stayed low due to that, even when I’ve had infections.
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“My legs feel stiff and heavy and painful.”

Well, now we’re up to N=2 for the same symptom within a few posts. Although I don’t have pain, definitely do have legs dead and heavy. I had Pfizer.

I’m not a doc but I am guessing that the reaction we’re having in week 1 is from stimulating the innate immune system, adaptive kicks in later. This jab seems to be a higher dose than others, the syringe was 2-3x larger than one for a flu shot.
 
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I'd like to know why nobody suspects after getting vaccine & developing fever, that they may have coincidentally caught actual covid? nobody seems to be sugesting testing, but after discovering the ludicrous & imo dangerous mask policy at some counties' vaccination centres, theres certainly a chance of catching covid at the vaccination centre, or on the way there/back on public transport etc. Why is it always seem to be assumed to be side effects?

If i get fever after mine i'll be trying to get tested? or is there soe reason thats not allowed/advised?
 
JemPD said:
I'd like to know why nobody suspects after getting vaccine & developing fever, that they may have coincidentally caught actual covid? nobody seems to be sugesting testing, but after discovering the ludicrous & imo dangerous mask policy at some counties' vaccination centres, theres certainly a chance of catching covid at the vaccination centre, or on the way there/back on public transport etc. Why is it always seem to be assumed to be side effects?

If i get fever after mine i'll be trying to get tested? or is there soe reason thats not allowed/advised?
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I think it should be easy to tell the difference. As I understand it, fever (and other symptoms) after the vaccine is common, and occurs within 24 hours of vaccination. In my case and my daughter's case fever started within 12 hours. Whereas the incubation period for covid after exposure to it is 5-6 days, and can be as much as 14 days.
 
JemPD said:
I'd like to know why nobody suspects after getting vaccine & developing fever, that they may have coincidentally caught actual covid? nobody seems to be sugesting testing, but after discovering the ludicrous & imo dangerous mask policy at some counties' vaccination centres, theres certainly a chance of catching covid at the vaccination centre, or on the way there/back on public transport etc. Why is it always seem to be assumed to be side effects?

If i get fever after mine i'll be trying to get tested? or is there soe reason thats not allowed/advised?
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The "What to expect" leaflet with which vaccinees (is there such a word?) are issued says:
"Although feeling feverish is not uncommon for two to three days, a high temperature is unusual and may indicate you have COVID-19 or another infection. ... These symptoms normally last less than a week." It goes on to suggest that if symptoms get worse or you are concerned call 111, and if the fever lasts longer arrange for a test.

Obviously, we don't know whether pwME should be expected to have a more severe reaction or not, and so to what extent the above will apply to them. I know that it's been suggested that if you do have a reaction it may be because you've had a brush with COVID-19 in the past, but I'm not sure whether that is scientific or not.
 
AstraZeneca, "moderate to severe" patient (may need to be updated as she only had it a few days ago):

Okay initially, got shivery overnight. Spent the next two days in bed feeling pretty wiped out. Slightly raised temperature. Noticeable red patch BELOW injection site. Seems to be improving now.

lunarainbows said:
On the day I was just more tired so I thought not much is happening. But the next day, shivering. Became feverish, hot but then freezing cold, heat pads constantly, couldn’t eat.. wasn’t helped by me exerting myself with an email. Also sharp increase in all over body pain as well as sensitivities. Severe migraine. I just felt more ill. Of course my arm where the jab was, hurt a lot. The pain and sensitivity has come down very slightly now. But still more ill. Today is the 5th day.. I’m still struggling to eat. Haven’t eaten “properly” (I mean, as much as I was eating before, which wasn’t much) since the vaccine. Still only able to eat /drink very little as I feel like throwing up. I hope it gets better. I’m sure it’s still much better than getting covid though so I’m still glad I had it.
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Me (so, person without ME):
Tiredness - check. Not helped by severely disrupted sleep because I was stupid enough not to take paracetamol.
Hot and then cold - check (partly why I said it reminded me of when I got my period)
Body pain - check (muscular, pretty much all over)
Maybe a bit queasy. But that could have been down to:
Migraine - check (although as I said, I think that was probably coming anyway)
Painful arm - check.
Felt okay by 5th day.

Hoping you feel better soon, lunarainbows.
 
JemPD said:
I'd like to know why nobody suspects after getting vaccine & developing fever, that they may have coincidentally caught actual covid? nobody seems to be sugesting testing, but after discovering the ludicrous & imo dangerous mask policy at some counties' vaccination centres, theres certainly a chance of catching covid at the vaccination centre, or on the way there/back on public transport etc. Why is it always seem to be assumed to be side effects?

If i get fever after mine i'll be trying to get tested? or is there soe reason thats not allowed/advised?
Click to expand...

Most of us don’t go anywhere and don’t do anything, so the combo of catching the bug and catching it just after receiving the shot is a rather low probability event
 
Trish said:
I think it should be easy to tell the difference. As I understand it, fever (and other symptoms) after the vaccine is common, and occurs within 24 hours of vaccination. In my case and my daughter's case fever started within 12 hours. Whereas the incubation period for covid after exposure to it is 5-6 days, and can be as much as 14 days.
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Yes, my wife had her vaccination last Sat, and had a lousy night and next day, but over worst of it by this morning. Main thing now is a sore arm.
 
I can't remember whether I posted my experience here (apologies f I have).

Anyway, I had my first dose of the AZ vaccine on 27 February. My arm was a bit sore the next day, but I felt fine. Over the following days, my cognitive function recovered temporarily to pre-ME levels; I haven't had cognition and memory as good as that for a long, long time. I also had a significant physical energy boost.

The effect faded after the first seven or so days, as I knew it would. It was good while it lasted, though, and it was a stronger immune boost than I get in the days before the symptoms of a cold develop.
 
After initially thinking that I would wait for the vaccine or not have it due to risk of vaccine flare up I changed my mind. Anxiety over family who suddenly entered an 'I'll be ok' mentality plus my husband being placed accidentally in group 6 made me realise the mental stress of not having the vaccine may be more harmful. My surgery have not been helpful at all over the years but I rang the manager with MEA info and she gave me an appointment, no question.
I had the Pfizer, rough for a week. At the 2 week mark I felt the ME had improved a little. However, insomnia worse. Nearly 4 weeks since I haven't deteriorated to baseline but would only describe the improvement as small. My mother with the AZ also had a similar effect. Early days. The 2 polls available don't really accommodate recording this.
 
I got my vaccine text but I don't know whether to get the vaccine. I'd be a lot more comfortable with the Pfizer but it seems likely to be the AZ (I am in the UK and that's what my parents got); I don't know what to do about this. I'm worried about having an ME/CFS relapse. I've already had suspected covid and had a severe relapse. I don't go out anymore, and was thinking I might try to get one when you can choose which vaccine to have as I thought the mRNA ones were probably a safer bet. Is this preference not based on anything?

I have been reading a lot of stories and I don't mind being ill for a few days as it's normal, but I'm worried about not going back to baseline as that is what seems to happen with every stressor since I got suspected covid a year ago. I am only just starting to feel like I understand what my new baseline is.

Thank-you for your experiences. I don't know what to do.
 
I had my jab yesterday. Astrazeneca. It's only been 26 hours but; Slept as well as usual. No arm pain, slight dull headache but no more than usual. Took paracetamol. Ditto with just about everything else.

As I had 'booked an appointment' at a medical centre, I was not prepared for the long queing so my legs were a little bit achier than usual.
But I did have a bit more energy today than I was expecting (I did 30 minutes in the garden today).

Of course it could all change tomorrow....... but then as I've now had ME for 20 years that's nothing new.
 
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