Covid Vaccine and RLS: Hi I'm wondering... - Restless Legs Syn...

Restless Legs Syndrome

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Covid Vaccine and RLS

gypsy49 profile image
38 Replies

Hi I'm wondering if anyone else has found their RLS going nuts after having Pfizer vaccine I know my RLS has always gone through the roof but about a week or so after having the jab but now it's going through everyone else's roofs :( driving me nuttier than usual not just legs but everywhere which isn't helping my back ggrrr .

Just thought i'd ask around might be in my mind who knows....

Thank you for your time

x

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gypsy49 profile image
gypsy49
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38 Replies
cicek profile image
cicek

Hi. Funny you should say that! I had my second Pfizer jab in April. For the last couple of months my RLS has been a lot worse and I thought I was augmenting on Roprinerole. It can flare up anytime and sometimes even as I am waking in the morning. These episodes are not prolonged but can happen two or three times daily or nightly. I do still have the odd lengthy episode but these short bursts are very new to me. I too have had feelings in my arms. I never associated it with Pfizer but you have got me thinking about the coincidence now! Guess we'll never find out but it will be interesting to wait and see what happens. Good luck to you.

gypsy49 profile image
gypsy49 in reply to cicek

Morning ermmm i think lol yeah i had the jab few weeks ago (can't remember exact date) but noticed a week or so later my RLS is a whole lot worst than normal and that was bad enough but it is driving me nuts arms,legs ,torso ,neck no respite im shattered was just a thought about asking if anyone else has the same i truly hope both yours and mine settles in time sooner rather than later lol im going ask when i go for my second jab , hmmm is it coincidence or not who knows like you said we might never find out not enough research done for long term effects as yet again like you said guess we have to wait and see what happens :) same to you sweet good luck hopefully it'll all pass take care and keep safe guess this virus is something we'll have to learn to live with hopefully it'll burn out . x

Madlegs1 profile image
Madlegs1

I've had both Pfizer jabs with absolutely no difference in RLS.I was incredibly tired for3 weeks after the first one, and was dreading the second one, but all I got was a sore arm. No time off work for that-- and even less sympathy!😜

gypsy49 profile image
gypsy49 in reply to Madlegs1

I just had a sore arm about half hour after having it and a foul taste in my mouth then all ok from the jab just worst RLS now

Pam34 profile image
Pam34

No problems for me either. Just thankful I’ve had it!

gypsy49 profile image
gypsy49 in reply to Pam34

I'm thankful i've had it but same time its hell i know i needed the jab with having Asthma bad.

Tinabugsu profile image
Tinabugsu in reply to gypsy49

So if you knew that the shot was going to exacerbate your RLS, prior to getting the JAB, would you have choosen to take it? If rather die from covid than kill myself from the RLS. This is turkey scary.

gypsy49 profile image
gypsy49 in reply to Tinabugsu

In short had i known itd exacerbate my RLS (RMS) would i have had it hmmm... in all honesty i really don't know guess i jst hope it calms down dying from covid isn't on my cards if i thik about it as i'd never be able to live with myself if i had passed it onto my daughter she's on the risk list nor my teenage granddaughter had that happened then gawd knows what i would have done , so yeah i guess you have to think about others before yourself whatever the outcome of the jab live knowing you could be saving someone elses life and live a hell life with RLS (RMS) so yep turkey scary stuff . Get the Jab save a life . it seems that not everyone with RLS (RMS) is suffering the worst effect from the jab which im pleased about just a handful that are .

LotteM profile image
LotteM

No problems for me. No effect at all on my RLS and no other effects than a sore arm for a day.

RLS spreading to other body parts sounds more like augmentation. Are you on a DA (ropinirole, pramipexole or rotigotine?)

gypsy49 profile image
gypsy49 in reply to LotteM

ohhhhhhh no im not on any of them things been there worn the t-shirt never to go back on any of them i suffered with them all after a couple of weeks the patches were the worst took a month to get out my system and i went through pure hell . i've suffered with RLS 24/7 for years now even the damn nuro dr given up on me not that he helped im on gabapentin but that does nothing for RLS but sure as heck got rid of my Trigeminal neuralgia im on clonzapan ?if spelt right and that's it tried everything else . but since this jab rls just gone from worst to worst if that's possible.

Madlegs1 profile image
Madlegs1 in reply to gypsy49

It's just possible that you are particularly sensitive to one of the ingredients of the particular vaccine.Otherwise, look at all possible triggers. Especially if you have changed your diet or something in your life, coincidental to getting the vaccination.

Pollyesther profile image
Pollyesther

The opposite happened with me (and also my cousin). After the second jab, my RLS went away completely for several weeks. It has since come back, but not as bad and less frequently. I have read of other cases like this too.

LotteM profile image
LotteM in reply to Pollyesther

That sounds wonderful. Whether it is due to the vaccine or not, (partial) relief from RLS is a blessing.

BocaMom profile image
BocaMom

Thank you for mentioning this - it’s something that has worried me terribly. My husband was hospitalized with severe Covid. Though I took care of him for many days prior to hospital, I never caught it (had multiple PCR and antibody tests).

I would like to get the vaccine but nobody on my medical team can assure me that my RLS and tremors won’t get worse. Have had some RLS relief recently and am not keen to take the chance.

It’s one of the most frustrating predicaments I’ve ever experienced.

gypsy49 profile image
gypsy49 in reply to BocaMom

you need to get the jab in honesty maybe one of the other ones might be different but reading everyone else's comments hardly anyone else has had any trouble with it i've asked around and seems only a very small handful has had problems and i mean small handful i was just unlucky im sure you'll be fine don't be put off you need to keep safe not just for yourself but everyone you live around you yeah :) you get it done and let me know how you go don't feel put off by what i've asked xx Hopefully your husband is ok and on the mend you need to be around for each other xx

BocaMom profile image
BocaMom in reply to gypsy49

Relying on my neurologist advice at this point - sorry.

gypsy49 profile image
gypsy49 in reply to BocaMom

So sorry if you thought i was being pushy but when i read that you said no one in your your medical team couldn't assure you about the jab and your RLS i was just trying to help didn't know about your neurologist i assumed he/she was part of your medical team .

BocaMom profile image
BocaMom in reply to gypsy49

Don’t worry about it - I do enough worrying for everyone lol.

I was lucky my husband survived; believe me I get how bad Covid is.

gypsy49 profile image
gypsy49 in reply to BocaMom

Already guessed you'd know more about covid than most with your husband being ill with it thankfully he survived :) i wish him well , not often i come on here hmm... I hope things work out for you .

Born2BWilds profile image
Born2BWilds

I’ll be honest and say that I’ve had 3 jabs of Pfizer. Other than a sore arm for a couple of days with each one, I had no reaction. If anything, my RLS has calmed down a bit, strangely enough.

gypsy49 profile image
gypsy49 in reply to Born2BWilds

yeah i had a sore arm for a few hours after no other effect apart from my rls going nuttier than normal and that's was bad enough before this , i'm please your ok and anyone else that suffered no long lasting affect from the jabs :)

Pyrogent profile image
Pyrogent

Hi Gypsy49, sorry to hear, but glad to say I had both Jabs of Pfizer, with no after effects at all. had 2nd jab on 11/05/21..hope you get it sorted soon, as with others with similar effects.

gypsy49 profile image
gypsy49 in reply to Pyrogent

cheers im hoping it'll sort its self out once i get the second one fingers cross lol or i'll loose me marbles ;) x glad your ok

keelstep profile image
keelstep

Gypsy49

I've had my two jabs.

Only result was a sore arm for a day each time and a sense of happiness that I can be with friends again and hug my grandkids. I wish the same for you.

gypsy49 profile image
gypsy49 in reply to keelstep

I was lucky as far as seeing my daughter and grandchildren nearly the whole time as we live in the same very small village they stayed here and i at theirs of course apart from the first lock down that was a killer seeing their house but not allowed near but rest of the time was fine being in their support bubble. My daughter got her letter for the jab weeks before me and yet to have it due to them telling her she'd have to go 30 miles away no buses and don't drive hmm... , but it sure has messed with my RLS hopefully won't hers . I'm glad your able to see family and friends again and hug them all :) wishing you all well x

Guitarpickin profile image
Guitarpickin

So sorry that’s happening! My two Pfizer doses were in March and I haven’t noticed any impact on RLS or PLMD. Hope your situation returns to “normal” soon.

gypsy49 profile image
gypsy49 in reply to Guitarpickin

Thank you :) so do i at same time dreading the second one who knows it might stop it lol

Irmajs profile image
Irmajs

I have not t had a problem. You should check it out because it could be a side effect from the vaccine that is making it worse.

gypsy49 profile image
gypsy49 in reply to Irmajs

I'm going to ask when i got for my second jab hopefully they'll have an answer i doubt seeing they'll most probs don't even know what RLS is but could be worth asking

lauraflora profile image
lauraflora

I had the Pfizer vaccines - 2nd one in early April. No, I did not have any change to my usual RLS, which is not as bad as some of the people on here. I do not take any medications for it. I mention that as could it be possible that there is an adverse affect combining the vaccine with medications? It would probably not be known, and certainly not tested for. I would hope that there is no bad affect.

sudokufan profile image
sudokufan

Hi. Although I sometimes get awful nights with RLS for uncertain reasons, I don't believe either of my jabs had any effect on my RLS whatsoever. I would think it's far more likely that something else is triggering it for you. But I'm sorry you're having such a rotten time and do hope you find the cause/treatment soon.

gypsy49 profile image
gypsy49 in reply to sudokufan

must be pure coincidence then had RLS most of my life in 57 now had RLS 24/7 for years (wish they change the name from RLS to RMS ) i've not change my diet eating once a day as always jst seems odd that nearly 2 weeks after jab my RLS has gotten to the point of going through everyone elses roof in the village not just mine , don't see a neuro dr now as he's given up trying to help tried everything in the books he says only on gabapentin and clonzpan ?? which don't do nowt my daughter has it too and looking like granddaughter does too .

sudokufan profile image
sudokufan in reply to gypsy49

So sorry I can't be any help, best wishes for the future.

Need-Sleep profile image
Need-Sleep

My RLS is flaring up awful after my vaccine. I was doing so well….

gypsy49 profile image
gypsy49 in reply to Need-Sleep

Had my second jab don't know what i was hoping for but didn't change owt just more of the same if not worst lol and i thought it couldn't get any worst hmm... life is such hell! so sorry to hear that your suffering too wouldn't wish it on anyone . did ask dr at the centre where they're giving the jabs and he said cos no long term research has been done they don't know the answers nd can only learn and wait. Hope yours settles soon x

serengazer profile image
serengazer

Two jabs finished two months ago. No increase in RLS, just a sore upper arm. Mild first time and a bit sorer second time. The relief I feel being vaccinated has been worth it! Hope you can figure your situation out. We are all so different in our responses so it may be affecting you differently. Take care

gypsy49 profile image
gypsy49 in reply to serengazer

Glad it worked out for you and others yeah my arm was sore after 1st jab but not the second but i so wished i hadn't had the blumming jab now im still suffering from having them RLS (RMS as i call it) was bad enough before 24/7 if there were more days i'd count them in too i'm soooo tired feel like a walking zombie . As you say it affect folk in different ways and from what i've read many are fine even some saying it's stopped their RLS and i'm glad for them .You take care too :)

Lapsedrunner profile image
Lapsedrunner

My two doses of Pfizer have not affected my RLS at all

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