Covid jab and Fibromyalgia

[TiredOfCovid]

I’m in a flare up currently which I’m struggling massively with
Has anyone had the covid jab with Fibro and felt any good / bad effects as a result?
Im wondering whether to get it this week in a bid to help shift this exhaustion / pain

I had it (have fibro & EDS) and it gave me uncontrollable shakes for a entire week. Worse thing I ever did.

Gosh this is scary and why I have been very nervous about it

Im already so unwell that I couldn’t bear anything else to go wrong - I was hoping it was kick start my immune system like some evidence shows

I hope you’re ok now

No, I’ve only heard of or know negative effects of the vaccine making things like Fibro worse or people having their first flares up after it

I spoke to several doctors, a specialist and even phoned the Govt Health Dept twice, all of whom assured me I would not get a reaction from Covid vaccine. I have ME/CFS, FM etc which was the reason I asked, and bingo....not only did I contract Covid at the very first vaccine clinic (at the hospital) but was so sick I thought I would die and with each subsequent booster shot I got worse. This started 2 years ago this coming Sunday and I am 'still' not well enough to leave home. During this time I was sleeping 20-21.5 hrs per day with those few non-sleeping hours being from 20 mins to 35-40 mins at a time...talk about short showers and microwave meals!

I didn't have the 5th booster and will never have another Covid vaccine again, ever!

Sorry if this reply is all over the place but, once again, I'm in the middle of another flareup due to getting my groceries delivered 3 days ago, having to unpack those into the pantry and then having to sign for a separate parcel delivery the same day. That's all I could manage for the whole day and now 3 days later still suffering with horrendous pain/fatigue/etc. Still sleeping 14-16 hrs each day, but with a neighbour's dog who barks at every tiny noise/movement/etc I am being woken quite often, which only makes things worse.

Not looking for sympathy, but as you asked the question, thought it might help you come to a decision and I realise everyone reacts differently. I just wish I had not listened to the 'medical experts' and taken my chances, as I still caught Covid at the vaccination clinic anyway.

Just joined to reply as I would have liked to hear from other people 2 yrs ago while making my decision. Wishing you all the best, please update either way...no judgement.

I have Fibro and have had all my COVID jabs apart from the current one which I have just been invited for and will be getting. I have had no side effects from the jabs. As with almost all medicine people react differently and when you add in that almost everyone with Fibro has it manifest in different ways and different medications and treatments do and don't work it is no wonder that there are such different reactions as there are in those getting the jabs and not having Fibro. Also worth baring in mind how ill you might be if you get COVID, many people I know who have it at the moment are saying it is harder to get over than if they have had previous variants.

what does your specialist say?

I have fibro which I have had since I caught my first and utterly horrific bout of Covid. I had my vaccinations as I work for the NHS and our jobs were at risk if we didn't have them (although that changed eventually). I was really poorly with all three of them and I will not let anyone near me with a Covid vaccine ever again.

Had you had the jab when you caught covid?

I always blame the fact I got long covid on the fact of no jab

I had all three jabs before I got Covid. I had Covid for the first time last September.

I have had three jabs so far. None of them affected my fibromyalgia. Just the usual feeling rough for a few days with aches and headaches. I finally got covid last year and it wasn't too bad for me so I am glad I had them!

Why do you need to 'kick start your immune system' with fibro, OP? You're not immune compromised?

DH has fibromyalgia. He had all the covid jabs he was eligible for, as wanted every possible protection from a bad bout of covid on top of the fibro. No reaction to the jab beyond nuisance side effects (sore arm, tired, a bit achey for a day or two). As @VeeAye says, everyone reacts differently. We tend to hear more about the bad reactions, perhaps.

If you are eligible for the autumn booster jab, OP, presumably that is for reasons other than the fibromyalgia (DH was told in clear terms fibro doesn't make him eligible) so will have that risk factor to weigh in the balance too?

I had my first one and felt really weak and had shakes for over a week, My doctor said"this was probably because i had covid when i had my vaccination" so when my 2nd one was due i was really worried but i stupidly went ahead, What a mistake that was i haven't felt the same since I've had cold after cold my energy as gone from very active and feeling generally well to having to force myself to do things if i could go back i would not of any of the vaccinations i politely declined the 3rd

Agreed. Also, the vaccine won’t kick start anything. It should give you some protection though.

As you are very symptomatic right now, I would suggest you take advice from your doctor and someone who knows your medical history.

I also have long covid

Sorry I should have been clearer in my post
I have had long covid for 2 years and only recently diagnosed with fibromyalgia off the back of the long covid
Currently I am very unwell. Exhausted and in agony but it’s never clear what is causing what because of the overlapping symptoms so it’s very hard to know whether the jab would be helpful or massively set me back even further ( if possible 😢 )

It's 6 of one thing and half a dozen of the other, OP. No-one can make the decision for you, having jabs does deplete nutrients (mainly B vits and iron) because your immune system has to get busy, so if you are already under par and have deficiencies, which you may do having Long Covid, then any jab may be more of a hindrance than a help. Have you had the original course of 2 jabs and a booster? If so then my opinion is there's little gain for you to have another booster, since you're not immune compromised.

The GP said I am immune compromised as since long covid I have developed pernicious anaemia and have to have monthly b12 injections

Its all so confusing what to do for the best

Your GP shouldn’t have said that unless you’ve had tests showing your immune function is compromised and/or you are on immune suppressing medication.

For those who are immunocompromised, we desperately need the jabs more than most. Obviously there are situations where it is not medically advisable but people generally know this.