Post covid neuropathy/bfs?

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

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

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.

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

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

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

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.

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!