Post covid neuropathy/bfs?

Posted by madmumtwitchy @madmumtwitchy, Mar 20, 2023

Hi there,
I’m turning to here because I’m at the end of my tether and feel quite alone. I had covid end of December for the second time in 6 months, wasn’t great, wasn’t terrible. Had a week off in between recovery before picking up another cold/flu during which I started getting muscle twitches throughout my body. Didn’t give much thought, they subsided after a few days only to return 2 weeks later and where they have stubbornly persisted for almost 6 weeks now. My GP is completely unfazed and thinks it’s stress, but I’m not convinced. Over the past 6 weeks I’ve been getting increasing bouts of tingling, pins and needles, numbness and in the past two weeks occasional sharp shooting pains in my arms and legs. The twitching feels like popcorn in my legs and just annoying twitches elsewhere, arms, torso, neck, face. It’s not too bad when I’m distracted or working, but oh my god at night - it gets much worse. It’s there if I wake during the night, which I frequently do despite exhaustion, it’s there in the morning but it hasn’t yet prevented me from falling asleep nor has it ever woke me in the night. I have pushed for a neurology referral which is 3 months from now but I’m just wondering if anyone else has experienced anything like this? I’m not an anxious person, I’m generally a very healthy 40 year old woman, but this is like nothing I’ve ever experienced before. I am going quite mad with frustration! Thank you!

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@rnlorena

Linda I am 68 and I do understand how mentally disabling this gets. I understand the mental part I really do. I will not give in to it. I am determined to keep getting educated about it. I have idiopathic neuropathy and have been dealing with different things. I have read up on Small nerve fiber. I had everything come back normal except for the skin biopsy. I have been getting a buzzing sensation in my left chest and it comes and goes. I just had it in my left foot. It comes and goes wherever it wants to. Elsewhere to. I get pinpricks in my eyes and wherever else they decide to go off. Some of them can be worse than others. I have had pressure in my neck in the front and in the lower back part of my head and neck which is fairly new. The pressure in the front of my neck was the worst. I thought I was gonna choke. I saw a neurosurgeon and he looked at my MRI and told me his conclusion. He did recommend me to see an Ear,nose and throat doctor. He also wants me to see a neurologist again. I told the young woman that called that I wanted to see someone new with neurology. Not that I would gain anything from that. Just thinking maybe a different perspective. Worth a shot. I will continuing pursuing these things. I read that small nerve fiber can affect your heart, your BP, your gut. Basically your autonomic nervous system. It's funny in a way because all of that was affected before I was diagnosed with the small nerve fiber. Only I have other things that have happened. Hang in there Linda! @rnlorena

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Hello, you said your skin biopsy wasn't normal. What was upnormal about it? Also any visible changes ? Thank you.

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When I got the biopsy results back it was positive for small nerve fiber. All the other tests I took were negative. That was when I was diagnosed with small nerve fiber. They took 20 tubes of blood. Mouth swab for genetics among other things.

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@sheilarob116

My husband just had his 4th booster, and bugging me to get mine. I have told him, I am suffering enough from my Neuropathy now, afraid the next booster will make me much worse. His comments were "would you rather die from covid than get the shot"... My answer was YES, rather than suffer any worse from Neuropathy

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I too feel that my neuropathy is due to the Covid Vac. I will not get another shot, I am cautious about having any vaccines now. My doctors have never once suggested it is due to the vaccine.

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Thanks for your response. My doctor neither confirmed or denied, dont think they want to make any comments on it. I have seen too many comments from people with same opinion as me.
Saw Neurosurgeon, who said yes that what I have, had EMG test, but not quite sure what kind I have. Will ask him for copy of my results. I am lucky so far, has spread from my toes to beggining of my heel, still not painful, but not very comfortable. Have bad pains in arms but was told some time back it was torn tendons, but beginning to question that diagnosis also. Have trouble just lifting my arms when go tand reach for things and putting on clothes.. I am 79 and know that aches aches and pains come with old age, but sure not liking all of this....

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@seachel

The symptoms you describe sound very familiar! I’ve ended up with neuropathy after my first dose of Pfizer vaccine in May of 2021 (I’ve had covid since then too). It was finally diagnosed as length dependent axonal sensory neuropathy a by nerve conductivity testing (after I had to insist!) in Dec ‘22. Studies I have read about post-Covid and post-vax neuropathy and paresthesia (those horrible sensations in your legs) can be an autoimmune response - and very hard to test. They are being treated with some success with steroids or IV immunoglobulins. I’ve struggled to find anything that helps with the ‘fizzing’ legs and burning feet (particularly at night) as I don’t tolerate most medications. I’m currently trying CBD (2 months in) and I’m now adding PEA to see if that helps. Some nights are OK, others are a nightmare. I’ve been given a prescription for prednisone, but the potential side-effects scare me a little, and want to give the CBD a good trial to see if that helps, as I have no side-effects from it. The PEA, in combination, is supposed to help with nerve pain too. I also use compression socks at night, the minute I notice my feet getting hot. When all else fails, I take a few Advil, and that helps - which also makes me think it is an inflammatory response. I hope there is something there that will help.

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Hi There,

I too have the exact symptoms you describe after my Pfizer vaccine around two years ago. My symptoms slowly get worse and no doctor can explain why? Wondering if you have found anything as yet that helps this debilitating condition? Kind regards Martin

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@martinnz

Hi There,

I too have the exact symptoms you describe after my Pfizer vaccine around two years ago. My symptoms slowly get worse and no doctor can explain why? Wondering if you have found anything as yet that helps this debilitating condition? Kind regards Martin

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Hi Martin, So sorry to hear you too have experienced this reaction from the Pfizer jab. Do you know if your Covid antibodies are still high? Mine are still very high, though have reduced a bit in the last year. I'm still doing the CBD and PEA (and Advil). I haven't found anything else that helps. I do use a magnesium and/or a capsicum cream on my feet/legs. I'm not sure it helps, but it doesn't hurt. I've recently had another nerve conductivity test to see if there has been any change to the neuropathy. The sort-of good news is that it has only gotten slightly worse over the year and it is still only 'sensory' as opposed to affecting the muscles. But I am noticing more numbness in my legs in the last 6 months 🙁 ... I've been tested for autoimmune issues, but they come back 'normal', so I can only assume that the spike is perhaps still active and the reason for the continued high antibodies (otherwise, why would my body keep producing them?). At this point, I am not hopeful for a return to pre-jab health, as there are now nerves in my legs that show no response to the nerve conductivity testing, and I have not had a single day without the tinnitus since the jab. I recently purchased one of those electrical impulse discs that you put your feet on and it sends an electrical current through your feet and lower legs. It may help a bit, but again, I'm not 100% sure. I have noticed a bit less burning (soles of feet) at night - again, not sure it helps, but it doesn't seem to make it worse. I am trying to keep as active as possible (walking, swimming), as I am unsure how this will affect me in the years to come... I'm sorry I don't have better news or suggestions for you. Basically, it sucks! Let me know if you find anything of value. Cheers, Michele

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@seachel

Hi Martin, So sorry to hear you too have experienced this reaction from the Pfizer jab. Do you know if your Covid antibodies are still high? Mine are still very high, though have reduced a bit in the last year. I'm still doing the CBD and PEA (and Advil). I haven't found anything else that helps. I do use a magnesium and/or a capsicum cream on my feet/legs. I'm not sure it helps, but it doesn't hurt. I've recently had another nerve conductivity test to see if there has been any change to the neuropathy. The sort-of good news is that it has only gotten slightly worse over the year and it is still only 'sensory' as opposed to affecting the muscles. But I am noticing more numbness in my legs in the last 6 months 🙁 ... I've been tested for autoimmune issues, but they come back 'normal', so I can only assume that the spike is perhaps still active and the reason for the continued high antibodies (otherwise, why would my body keep producing them?). At this point, I am not hopeful for a return to pre-jab health, as there are now nerves in my legs that show no response to the nerve conductivity testing, and I have not had a single day without the tinnitus since the jab. I recently purchased one of those electrical impulse discs that you put your feet on and it sends an electrical current through your feet and lower legs. It may help a bit, but again, I'm not 100% sure. I have noticed a bit less burning (soles of feet) at night - again, not sure it helps, but it doesn't seem to make it worse. I am trying to keep as active as possible (walking, swimming), as I am unsure how this will affect me in the years to come... I'm sorry I don't have better news or suggestions for you. Basically, it sucks! Let me know if you find anything of value. Cheers, Michele

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Hi Michele,

Thank you so much for your reply. I am in New Zealand and health care is very poor. Your situation is so much like mine. Since this happened I reduced my work to two days a week, but I am doubtful that I can even manage that as my symptoms continue to decline. Like you I got severe tinnitus just hours after the vaccine and then severe vertigo which lasted months, but fortunately got a lot better (not 100%). Up until recently the situation was at least manageable, but now the muscle twitching is starting in other regions (started in calfs) and I am suffering from severe cramps all over the body. I have also continued to exercise daily as much as possible and feel it is at least slowing the deterioration. After reading your reply I will push for the tests you have had, nerve conductivity and COVID antibodies - hope they can do these tests in New Zealand. Also like you I tried CBD and it did not help. Tried all sorts of painkillers and anti depressants, which if anything, just made things worse. Doctors keep suggesting anxiety, but I have ruled that out as I have come to accept my situation and just make the best of it. I really don't believe it to be the cause. If I find out any new information or something that helps I will let you know, Thanks again. Martin

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@martinnz

Hi Michele,

Thank you so much for your reply. I am in New Zealand and health care is very poor. Your situation is so much like mine. Since this happened I reduced my work to two days a week, but I am doubtful that I can even manage that as my symptoms continue to decline. Like you I got severe tinnitus just hours after the vaccine and then severe vertigo which lasted months, but fortunately got a lot better (not 100%). Up until recently the situation was at least manageable, but now the muscle twitching is starting in other regions (started in calfs) and I am suffering from severe cramps all over the body. I have also continued to exercise daily as much as possible and feel it is at least slowing the deterioration. After reading your reply I will push for the tests you have had, nerve conductivity and COVID antibodies - hope they can do these tests in New Zealand. Also like you I tried CBD and it did not help. Tried all sorts of painkillers and anti depressants, which if anything, just made things worse. Doctors keep suggesting anxiety, but I have ruled that out as I have come to accept my situation and just make the best of it. I really don't believe it to be the cause. If I find out any new information or something that helps I will let you know, Thanks again. Martin

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Hi Martin. I too am in NZ (Nelson). Where are you located? I just had a weird thought. Maybe we had the same batch? Mine was Batch: ER7449-024. Do you know yours? The antibody test is available here, but you have to pay for it ( and get referred for it) and costs around $100. I went to WGTN for the nerve conductivity test with Dr Ian Rosemergy (again, by referral). If you’d like to chat, send me your phone number to my email address (mysurcouf@gmail.com) and I’ll give you a ring. Cheers Michele

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@lindasue716

I developed similar after covid vaccination. My neurologist said the vaccine over activated my central nervous system. No medications helped. 2 years later .. stumbled across low dose naltrexone. Total game changer. 🙏🏻 do some research on this. I only take .5 mg at 9am and again at 9pm. Symptoms almost gone.

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Hello,
Please share more about this LDN medication. After reading your post, I did research and it seems very promising. If it is working for you, you need to shout it from the rooftops!! I have horrible pain and nothing has helped. Problem is, it seems to be difficult to find at the low dose. A 4.5mg or 3.0mg is suggested in the research. How did you find the low dose you are taking? Have you noticed any side effects? I'm going to ask my pharmacy and doctor today if I can get this to try. Please keep posting!!! Many thanks for sharing!

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@jipc

Hello,
Please share more about this LDN medication. After reading your post, I did research and it seems very promising. If it is working for you, you need to shout it from the rooftops!! I have horrible pain and nothing has helped. Problem is, it seems to be difficult to find at the low dose. A 4.5mg or 3.0mg is suggested in the research. How did you find the low dose you are taking? Have you noticed any side effects? I'm going to ask my pharmacy and doctor today if I can get this to try. Please keep posting!!! Many thanks for sharing!

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Hello. I would be happy to share a bit more about my experience with LDN. After seeing two neurologists, neither of them were able to help me. Nor were they willing to prescribe LDN after I had discovered it. My dermatologist, who is studying Integrative medicine, was willing to prescribe this to me. You then need to find a compounding pharmacy. I use “Carefirst” mail order.

I still take LDN, daily, and all of my original neurological symptoms are gone. I started very low at .5 mg. It took me almost a year to titrâtes up to 2 mg due to side effects. (Headaches and recurring neurological symptoms when I went up). My body needed lots of time to adapt to this drug. I am now taking 2 mg per day and that is perfect for me.

I hope this helps. 🙏🏻

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