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!

Interested in more discussions like this? Go to the Neuropathy Support Group.

@bettyg81pain

I had a small amount of neuropathy in my feet-nothing bad; but, when I got COVID, that's when it went to the nerves in the lower part of my legs with excruciating pain, which has stayed with me since!!

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I never had Covid, but had 2 vaccines and 3 boosters and shortly after have Neuropathy.. I am sure it is from the vaccines, and my husband wants to have the 5th booster but I am not going to. I am lucky so far, as it is in my feet, started with the toes and has spread along to my heel and going up my leg is a little numb. And I dont get too much pain. I have torn tendons in my arms and they are very painful and not sure if the Neuropathy is affecting them.. Also have bad Arthritis all over so not sure if also worse do to Neuropathy. I have an appointment this week for a Electromyography Test so hoping that gives me some answers... Hope you find something to help your pain....

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I have had all of these symptoms. I’ve had some relief with a low dose of Zoloft. My theory is a low serotonin level. Look up those symptoms. Honestly, it wouldn’t hurt to get tested.

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@sheilarob116

I never had Covid, but had 2 vaccines and 3 boosters and shortly after have Neuropathy.. I am sure it is from the vaccines, and my husband wants to have the 5th booster but I am not going to. I am lucky so far, as it is in my feet, started with the toes and has spread along to my heel and going up my leg is a little numb. And I dont get too much pain. I have torn tendons in my arms and they are very painful and not sure if the Neuropathy is affecting them.. Also have bad Arthritis all over so not sure if also worse do to Neuropathy. I have an appointment this week for a Electromyography Test so hoping that gives me some answers... Hope you find something to help your pain....

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It is very interesting that you are linking your Neuropathy symptoms to COVID Vaccines. I truly believe without substantial proof that is why I have upper arm /muscle pain, swollen hands and fingers, burning pain at night in both of my hands. I've never had COVID either. Two vaccines, three boosters.
Originally my primary care physician put the two together.

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I've read studies that indicate that covid vaccines can cause neuropathy in a small percentage of people, but getting covid increases that percentage. In short, if you got it from the vaccine, you would have gotten it from covid itself.

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I am 58 years old and have almost identical symptoms. I am very healthy and active, was a collegiate athlete and have developed exactly the same symptoms post COVID. Mostly in my feet but the twitches are everywhere like yours. My feet have now progressed over a year to a really stiff feeling when I try to flex my foot. I did have an EMG with a neurologist and I have idiopathic neuropathy (don't know the cause). have had blood work ups and everything comes back normal but my sensations are getting worse. Have done multiple treatments like accupuncture chiropractic,gabapentin even hypnosis and nothing has changed. No one understands how mentally disabling this gets. Never pain really just constant sensations.

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@lindawilson4443

I am 58 years old and have almost identical symptoms. I am very healthy and active, was a collegiate athlete and have developed exactly the same symptoms post COVID. Mostly in my feet but the twitches are everywhere like yours. My feet have now progressed over a year to a really stiff feeling when I try to flex my foot. I did have an EMG with a neurologist and I have idiopathic neuropathy (don't know the cause). have had blood work ups and everything comes back normal but my sensations are getting worse. Have done multiple treatments like accupuncture chiropractic,gabapentin even hypnosis and nothing has changed. No one understands how mentally disabling this gets. Never pain really just constant sensations.

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Hello @lindawilson4443, Welcome to Connect. You are so right. Dealing with neuropathy and it's related symptoms can really be hard on our minds. About the only thing that helps me with the mentally disabling affects is to keep my mind busy so I don't think about it. I also have idiopathic small fiber peripheral neuropathy but it's not COVID related and I've been dealing with it for over 30 years now. I am fortunate that it's just numbness and a little tingling. I posted my neuropathy journey story in another discussion here - https://connect.mayoclinic.org/comment/310341/. One suggestion I have and it's sounds like it's the reason you came to Connect, is to learn as much as you can about your condition and treatments that are available that might help.

There is another discussion that you might find helpful.
--- Peripheral Neuropathy and benign fasciculation syndrome.: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/.

Some sites you might find helpful for learning more about neuropathy and treatments:
--- Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/
--- Foundation for Peripheral Neuropathy YouTube Channel has a lot of neuropathy webinars - https://www.youtube.com/@foundationforperipheralneu4122/videos
--- Neuropathy Commons - https://neuropathycommons.org/neuropathy/neuropathy-overview.

If you don't mind sharing, what symptoms cause you the most problems?

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@lindawilson4443

I am 58 years old and have almost identical symptoms. I am very healthy and active, was a collegiate athlete and have developed exactly the same symptoms post COVID. Mostly in my feet but the twitches are everywhere like yours. My feet have now progressed over a year to a really stiff feeling when I try to flex my foot. I did have an EMG with a neurologist and I have idiopathic neuropathy (don't know the cause). have had blood work ups and everything comes back normal but my sensations are getting worse. Have done multiple treatments like accupuncture chiropractic,gabapentin even hypnosis and nothing has changed. No one understands how mentally disabling this gets. Never pain really just constant sensations.

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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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@sheilarob116

I never had Covid, but had 2 vaccines and 3 boosters and shortly after have Neuropathy.. I am sure it is from the vaccines, and my husband wants to have the 5th booster but I am not going to. I am lucky so far, as it is in my feet, started with the toes and has spread along to my heel and going up my leg is a little numb. And I dont get too much pain. I have torn tendons in my arms and they are very painful and not sure if the Neuropathy is affecting them.. Also have bad Arthritis all over so not sure if also worse do to Neuropathy. I have an appointment this week for a Electromyography Test so hoping that gives me some answers... Hope you find something to help your pain....

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I too feel that my diagnosed PN is a result of the Covid Vax. I only say that because I seem to be able to correlate my symptoms with the time of the latest booster. I'm done with the booster, no more for me.

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@johnbishop

Hello @lindawilson4443, Welcome to Connect. You are so right. Dealing with neuropathy and it's related symptoms can really be hard on our minds. About the only thing that helps me with the mentally disabling affects is to keep my mind busy so I don't think about it. I also have idiopathic small fiber peripheral neuropathy but it's not COVID related and I've been dealing with it for over 30 years now. I am fortunate that it's just numbness and a little tingling. I posted my neuropathy journey story in another discussion here - https://connect.mayoclinic.org/comment/310341/. One suggestion I have and it's sounds like it's the reason you came to Connect, is to learn as much as you can about your condition and treatments that are available that might help.

There is another discussion that you might find helpful.
--- Peripheral Neuropathy and benign fasciculation syndrome.: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/.

Some sites you might find helpful for learning more about neuropathy and treatments:
--- Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/
--- Foundation for Peripheral Neuropathy YouTube Channel has a lot of neuropathy webinars - https://www.youtube.com/@foundationforperipheralneu4122/videos
--- Neuropathy Commons - https://neuropathycommons.org/neuropathy/neuropathy-overview.

If you don't mind sharing, what symptoms cause you the most problems?

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Mostly my left foot started in big toe over a year ago and now my entire foot. Also a little in my right foot. Starting to have pressure in my eyes that is new.

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@mebee

It is very interesting that you are linking your Neuropathy symptoms to COVID Vaccines. I truly believe without substantial proof that is why I have upper arm /muscle pain, swollen hands and fingers, burning pain at night in both of my hands. I've never had COVID either. Two vaccines, three boosters.
Originally my primary care physician put the two together.

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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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