Covid-19 vaccination experiences

I am 38. (I am assuming my GP put me in group 6 but I wasn't told - I have not had any communication and I am trying to speak to them, but haven't been able to). Would side effects translate to ME/CFS worsening though? I feel like people are mainly discussing transient effects, no matter how bad, which I am not so worried about. I was under the impression that Pfizer may be more recommended for us than AZ?

...(I am also assuming I am "younger people"??) Haha

 

I am also very worried about this. Constant jabs and an immune system (probably) behaving in an unpredictable way (ME/CFS) worries me. It's one thing doing a one-off in an emergency, but... yikes.

 

—- not sure if I should edit my original posts, or add to them via new posts —

Update, day 13 after 1st Pfizer. I’m still below prior levels of function, but there’s been a gradual improvement this week. Hmm... Improvement is not right term, something like lessworsening feels more appropriate, but that could be marked as patient problematicism.

Perhaps there’s a German word meaning “a maladroit condition with is less mal then before but also not adroit”. There probably is; that’s a language in which your auto mechanic may inform you that he needs to perform laser-sighted mechanical surgery on your Doppelkupplungsgetriebe, using only words familiar to the owner of a German car.

 

My first shot has just been inflicted.

AZ

They just turned up, which didn't really surprise me as my GP said that's what would happen, that no call or anything would be made beforehand. I assumed that was for 'security'.

I am expecting a delivery, which is the only reason the door system is activated, or the downstairs door was opened.

Most of the 'conversation' while they were here was about why I hadn't answered their call, it seems they call everyone before turning up, even when my GP is aware that my phone doesn't ring and that email, or the occasional text, are the only way of contacting me.

But it's done.

Immediate side effects could just be stress from being invaded twice in 9 days.

Mild headache, numb buzzing mainly on left hand side of face (injection was in left arm but doubt that's relevant), initial pain and buzzing in left forearm down to fingers (common symptom for me).

There is a peculiar smell.

If I have anything that lasts longer than 48 hours I am to call...yada yada yada.

I didn't really feel like going into why that wouldn't happen, having just discussed why my phone is text only for 3 eternities.

..any discomfort, paracetamol, ibuprofen, or whatever I normally use - again didn't really feel like going into ME and that all the side effects are 'normal' for me.

They left their rubbish, in a bag, to go in my domestic waste.

 

I had the Astra Zeneca jab about this time yesterday.

I went to my GP surgery's vaccine clinic & I have to say they were extremely efficient. Virtually no queuing by which I mean my waiting time to be handed paperwork to fill in and then to be called in was only about 5 minutes total.

They did ask me to wait 15 minutes before I left in a socially distanced waiting area being watched by a nurse.

I can't say that I have noticed any side effects at all. Yet.

I have some sinus pain but that's completely normal for me.

I was a bit wired & tired yesterday but that's typical as I had been out.

I am a bit wiped today but nothing unusual as I was out yesterday.

The injection site looks perfectly normal. No swelling & no unusual arm pain. I got them to inject the left arm as I usually sleep in my right side.

 

I had my first AZ dose a week ago. It was very well organised by a group of local GP practices in one of the surgeries. No queueing when I was there. It was very quick, I had a lift there, and the distances walked were small. It was a doable within my pacing capacity. If there had been a queue we had my wheelchair in the boot.

About 10 minutes afterwards I experienced a strange ‘sharp’ sensation in the pharyngeal area with an almost metallic taste/smell. I think it was gone within 10 minutes.

A few hours later I developed a mild headache, and sore arm.

Over 3 days I experienced general malaise, muscle and joint pain, mild headache, a bout of pricking and tingling especially in hands, mild nausea for a several hours, occasional shivers, swelling and pain and tenderness to touch at the vaccination site.

eta - also gut discomfort and back pain in the kidney area.

I took paracetamol for a couple of days.

It took 6 days for the tenderness at the vaccination site to go.

I think I’ve only had a reaction to a vaccination once before - sore arm with flu jab - so this was an experience. The joint and muscle pain was the worst symptom, and worse than the muscle pain I get with ME at my current level. Glad it didn’t last all 3 days. I had COVID in December so that may be a factor in my reaction.

I don’t think it’s affected my ME really, but I have been falling asleep in the day, which I can’t usually even when I could do with it. I have rested more than usual this last week though as a precaution.

edit for clarification and typo

 

Seems there may, in my case, be side effects.

Relatively minor, compared with PEM.

No real visual mark at injection site, but it feels like there is a lump when I move the shoulder.

Mild headache, some myalgia (flu like mainly), some deep muscle pain (again flu like, or maybe hit by bat like - difficult to be sure as I was getting this in the week before the jab, so even though it 'seems' worse, it may not be related.

Vertigo, dizziness, fatigability (standing up for much more than 2 minutes is 'unpleasant'), again I was PEM'd before/during the jab, so whilst it seems slightly worse it may not be connected.

and the fun one, neuropathic types of pain - almost definitely jab related, able to break through a smallish dose of oramorph on top of my normal pain meds - driving me slightly nuts.

Something not helped by my not being able to do much lol

But...nothing worse than the discomfort levels of a mild/moderate case of PEM, with added neuro pain, so far.

 

Seems like we have very different experiences with the same shot. No surprise I suppose, nothing about this disease makes sense.

For me it’s now the 15 past the first dose. I still have reduced capacity, meaning more PEM after doing less. No other vaccine has had this effect on me.

Edit: It’s more like continuous PEM.

 

Just passed the three day mark after my vaccination.

Still can't say I've noticed much at all.

The only thing is a slightly tender area that I found by accident because I was checking the vaccination site.

The arm looks completely normal except for a teeny, tiny, less than 5mm bruise. I bruise very easily. I had a blood test for thyroid function done and the post blood draw bruise on my other arm is much worse.

The tender area is about 3 inches above the injection site and it could be completely unrelated. I get sore patches in my muscles all the time. It could just be that I slept on it funny.

I'm one of those people who don't get colds or flus properly anymore. Just minor sniffles and sneezes for a day or so followed by an ME crash.

 

This is what I was really worried about before the vaccine. to be honest, it’s now been 2 weeks since I had the vaccine and I’m still not back to where I was before. One of the things that’s been an issue has been even more difficulty eating, more sensory sensitivities, general weakness etc. I’ve also had a lot of confounding factors at the same time (stress and exertion due to other things, pain, new painkillers), which I think haven’t helped. Basically, I think it comes down to ;

If you have a relapse now, it is still likely to be far better than if you get covid. So individually you’d need to weigh up the risk of you getting covid in the near future.. you’re right that in the future you may be offered a better vaccine, I don’t know. For me it was quite clear cut because I was going to go out of the home and be around others for an extended time, soon, so I couldn’t risk covid. There’s the additional worry that in the U.K., they’re now opening everything back up and lockdown is ending, since they think everyone’s now protected from the vaccine.. so that increases the risk.

If you do have the vaccine, my advice is to rest as much as possible. I mean, even things you were doing before.. don’t do them. I think that’ll give your body the best chance of recovering as much as possible from it. I still had to exert myself on some things and that definitely didn’t help me at all. Even things that will mentally stress you, as far as possible keep away if you can! I would try to sleep as much as possible. Atm I’m having naps many times a day.. as I just can’t keep awake.

 

and there was me thinking that 2 shots were necessary to be considered 'vaccinated', and also that even the first shot took 3-4 weeks to approach full effect in someone my age.

But it seems that I have been told to stop shielding a mere 12 days after my first jab

Yippee

 

I had Pfizer on Wednesday (17th March) and had a bit of tenderness at the vaccination site, and was a bit sleepy that afternoon. Since then I’ve pretty much stayed around my normal. Perhaps slightly more energy over the weekend, but that might just have been the beautiful Spring weather we had here!

 

I had AZ yesterday midday.

Was OK for 12 hours, until this morning, woke early with a sore arm, gradually intensifying headache and felt very sleepy and unwell.

Whenever I tried to doze which was most of the day my dream-brain went into a weird kind of overdrive and I kept repeatedly dreaming I was playing a game I played recently, only very intensely and obsessively. So much so I felt I had a bit of a problem.

It has been very odd and I put it down to a febrile symptom though my temperature seems normal. I have had this kind of problem before but only when I had really bad PEM and was very ill with undiagnosed ME. The headache got more intense and finally caused me to vomit which seemed to break the storm as it were but I am still feeling headachey and was sneezing bits of chewed mango for a while!

I dont know how much is due to PEM and how much is reaction to vaccine. I think I had COVID-19 late 2019. Since then I have been getting headachey bouts on a weekly basis just like this only not quite as intense, also my right kidney has been feeling achey and I have been getting skipped beat PVC type heart arrhythmia.

I also get headachey episodes as PEM after any activity, which is delayed 24 hours. To get the vaccine I had to drive a fair way (30 miles round trip) because I was concerned a taxi would be a quarantine risk, I think the outing was enough to cause PEM on its own. So I think my reaction is a mixture of PEM and reaction to the vaccine, which is quite intense because I think I have long covid anyway and my immune system may already be primed against the virus antigens.

I think I will get a taxi for my booster.

 

I don't think it works like that. I suspect that using any form of transport as a second jab will be technically quite difficult, and largely ineffective against the virus.

Fantastic Voyage was just a movie, as was Ant Man - I don't think we currently have that sort of miniaturization technology, at least not outside of California.

 

*groan*

 

Now at 10 days post AZ vaccine. My parents had been vaccinated at our GP surgery & said it was well-organised & the rooms used were close to the entrance, so we didn't bother to take a wheelchair, only to find they'd moved to the other side of the building, which I then had to walk - huge mistake. I wasn't asked to wait afterwards, but was obviously being accompanied so perhaps they thought it unnecessary. No volunteers, just the practice nurses & GPs, no queues, only routine questions (including the amusing "Are you feeling well today?").

I was feverish the next day then borderline feverish for the two following days, & have had a significant flare - severe headaches (mostly migrainous), increased photo- & phonophobia, greater myalgia than usual and, unusually, cutaneous allodynia, which I've only experienced once or twice in over a decade of ME. I spent the first 4 days in bed but have been slowly improving since then, although still more severe than previous baseline. Some of these symptoms could well have been 'ordinary' PEM from the unexpected exertion. Pain & tenderness around the injection site persisted for ~5 days.

For other younger ME patients trying to be added to cohort 6: my initial request to my GP was refused on the grounds that the practice was strictly adhering to the Green Book list; however, he said they were making exceptions for patients where a specialist advised them to do so, and it's through that route that I was added.

Haven't been able to read the whole thread but hope others have fared better than I.

 

I had my first AZ vaccine dose twenty six hours ago. A nurse came from my GP's surgery to give it as I've been housebound since a relapse/developing Long Covid in mid December. I didn't even have to ask, so was fortunate in that regard. Since the jab I have felt a little mentally sharper than normal (I normally suffer from continuous brain fog) and my lower back has completely seized up. This may of course be un-connected with the jab as it's a problem I've had on and off for a long time - although not in the past two or three years.

 

I had the AZ vaccine nearly 48hrs ago. I was added to group 6 after writing to my GP, which I am very grateful for.

The trip to the surgery was my first trip out in over a year, (I was housebound even before shielding), but it was very well organised so I didn't exceed my usual step count that day.

The first 24hrs were rotten, a mix of definite non-ME vaccine reaction symptoms: headache, muscle aches, (I don't get these with ME), general febrile feeling, compounded by ME crash type symptoms where I desperately wanted to sleep but couldn't. I had a very sore arm but I had that with my last tetanus shot too before my ME recurred.

I'm feeling much better, relatively speaking, today and fingers crossed it'll carry on improving.

 

End of day 3 and I am happy to report the headache and fluey symptoms have gone, still have even lower stamina than usual but the site of injection has not stopped aching and the skin over a part of the deltoid muscle leading down from the injection site has gone rosey pink and is slightly swollen. This is a common side effect according to NHS inform, which can last up to ten days so I am not unduly worried at this juncture. *fingers crossed*

 

Got a phone call from my GP surgery saying I can have the second dose after 28 days of the first one? V surprising given the amount of stress I had to go through to get the first one. I haven’t booked it yet as very anxious about if it will cause more symptoms and/or a relapse before going into hospital. But isnt the 2nd dose meant to be better than the 1st one - so not as many symptoms / immune reaction?