Impact of Covid vaccine on FND - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Impact of Covid vaccine on FND

Keeponfighting profile image
15 Replies

FND symptoms have improved

Some of my symptoms have disappeared

And I worry that if I get the Covid vaccine my symptoms can get worse

Is anyone else is worried about this?

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Keeponfighting
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15 Replies
Lucy-15 profile image
Lucy-15

Hiya yes I am really concerned and can’t decide yet whether to have the vaccine it’s really unlike me.

Just my FND / limp started in 2014 triggered by a radio frequency denervation injection my my lower Spine when my 5 years back pain became Intolerable.

My walking and energy is better than it’s ever been ( redundancy helped ! now self employed) plus years of my own physio and hard work ... ... but I have numbness and tingling on my face and jaw at times and immobility, muscle spasms and jerks plus other symptoms when I over do it.

The fact that Neuro symptoms etc muscle aches n spasms are mentioned in long covid patients now, I worry that if I put this into my body it may trigger things off! I work from home and have shielded mostly etc so far.

I know it’s about not passing it to others etc I just can’t come to a decision as yet ....

Keeponfighting profile image
Keeponfighting

I also started working after 10 years of battling with these symptoms. I still have some symptoms but not much.

I think I will speak with my GP and ask for an exemption letter so I won’t have to take the vaccine.

Lucy-15 profile image
Lucy-15 in reply to Keeponfighting

Hi there can we not just decline ? I’ve had a text which I can decline it on. Not replied as yet ? Or do you think a GP letter would be handy ? Just wondering. Thanks

MarbleDuckling profile image
MarbleDuckling in reply to Lucy-15

It seems to be different depending on who is managing you.

I'm a carer for my girlfriend who has FND.

She got a text message asking to book using the accurx website, where she'll be having the Pfizer injection. The only location offered was a portacabin setup outside our local GP office, and it was 7 days wait for it. The text message said not to call the GP about it.

The following day, I got my invite via a letter in the post from NHS services. Mine was booked via the NHS website, and was offered appointments, seemingly, anywhere in the country. I opt for the closest one and got it the following day. I was given the Oxford/AstraZeneca vaccine.

My mother also lives with us. She's 74 and her GP (different from ours) called her and made the appointment over the phone to come down for hers at the GP office where the nurses there administered it.

In all cases the vaccine was never forced, and could decline to have it.

I had a mild fever for the first night (no worse than a hot summer's night) after my injection, mostly felt like I had a hangover.

Girlfriend was "fine" - but she normally has headaches and such thanks to FND so didn't notice any difference. My mother had no symptoms at all.

I would highly suggest you do have it, but of course you can opt not to have it. I don't think you need any exemption letter not to have it.

The problem going forward will be as we get to lifting the lockdown and certain places might require you to show proof you've had the jab. However, as of right now I have zero proof that I've had the jab except for a little business card with my next appointment date. My girlfriend didn't have one given to her, and my mother had a letter.

I don't know how it would work if any of these so called 'vaccine passports' were to be brought in.

I assume at that point your GP would give you an exempt passport anyway but as it stands there is no way of knowing who has or hasn't had it other than how the government is managing the roll out and uptake.

Sorry for the long post.

Keeponfighting profile image
Keeponfighting in reply to Lucy-15

Hi Lucy-15

The problem is that there are certain services that are imposing restrictions if you don’t have the vaccine. They had started with travelling and I fear that this would escalate to other areas.

sykgirl profile image
sykgirl

I'm really intrigued by this. Why are you all more afraid of the vaccine than of getting Covid-19 itself? I'm not being funny, I'm genuinely asking. Covid-19 causes long covid in healthy patients, which looks a lot like FND. People with pre-existing conditions are statistically at a much greater risk of dying or being left with severe long term exacerbation of symptoms. The vaccines are admittedly new and so unknown, but it seems a bit like running into a busy road to avoid a stranger to me; you're far more likely to be killed or badly wounded by a big metal car hitting you than a stranger. This genuinely really interests me.

Keeponfighting profile image
Keeponfighting in reply to sykgirl

Hi Sykgirl

I don’t know whether you are an FND patient or if you have had Covid. Well I had a really bad Covid which I end up in the hospital twice and as an FND patient I would much rather have Covid for a second time even if it meant to die then to live my life with worse FND symptoms which could be caused by the vaccine . FND symptoms can at be extremely unbearable which stops me from having a life anyways, it is mostly living to try to manage the symptoms which most of times I fail as symptoms persists . Covid came to me and left me. Therefore I wouldn’t want this vaccine as it could minimised further my already restricted life due to FND. I hope that answers your question.

sykgirl profile image
sykgirl in reply to Keeponfighting

Yes it does. Obviously it's personal choice. I'm glad to hear you have recovered from Covid-19. That must have been a rough time for you.I have had FND for over a decade, am severely disabled, partially sighted and in constant agony as a result. Following a severe bout of pneumonia years few ago, I have pleurisy which flares whenever I get a virus, plus I have hyponea and paradoxical breathing which mean I have to use a CPAP machine at night. I have responded badly to many medications over the years, so I did careful research and consulted my neurologist, before deciding that the risk of Covid-19 itself is infinitely greater to me than the risk of the vaccine. I had my first dose of Pfizer 3 weeks ago, and had no side effects. We are all so unique and must all make our own choices when it comes to any medical interventions, including vaccines.

Best wishes

Batty1 profile image
Batty1

Another poster on this site with (epilepsy and Arthritis) has had their first of 2 covid jabs and this person just reported that they are in a lot of pain that wasn’t present before they had the vaccine.

in reply to Batty1

Hi Batty 1, Did this person end up having extra fits as well?

Batty1 profile image
Batty1 in reply to

This person did not say anything about the epilepsy only about having increased body pains.

This is what he/she posted

3 days ago

I feel absolutely awful... the pain in my joints every single joint from shoulder to feet is horrendous. I had an awful night. Painkillers won’t help. I almost regret having the jab. I never expected this kind of pain at all. When will it go !!!

in reply to Batty1

Sounds like your friend is having an awful time of it...I'm so sorry. I'm sorry for the misunderstanding, also.

willie1224 profile image
willie1224

I have FND and was very worried about getting the Covid vaccination. I work in health care and was exposed to many Covid positive people. I thought long and hard about getting the vaccination because my system is become very touchy when it comes to medications. But did finally decide to get the vaccine. I had a sore arm for a few days afterwards but no other side effects. Then 10 days after receiving the vaccine is when I become very sick with side effects from the vaccine and triggered many FND symptoms also. I had a new symptom every day for the next 12 days. I did go to my Doctor and he said it was a very delayed immune reaction caused by the vaccine which triggered the neurological reaction and the FND symptoms also. He also stated that if I get the second dose of vaccine that the immune response will probably be more severe and will also affect my FND symptoms. It has been about five days now that I have had no symptoms and am feeling back to normal. I do not plan on getting the second dose after this experience. I hope this will help someone else who is struggling with whether or not to get the vaccine. But this is just my experience everyone is different.

Keeponfighting profile image
Keeponfighting in reply to willie1224

Hi Willie

Thanks

That is exactly why I am concerned as I am in a better position. I still have some symptoms but not as severe as before and I don’t want to get worse symptoms or more symptoms.

I will definitely be speaking with my doctor about it even though I often don’t feel like speaking to them as many of them don’t know what FND is about. It is so frustrating that I have to be the one explaining to them.

All the best

Denise1968 profile image
Denise1968

Hi. I would be very cautious. I was fit healthy and active prior to my covid vaccine and now I am suffering with FND symptoms.

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