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Post covid neuropathy/bfs?

Neuropathy | Last Active: Apr 15 8:49am | Replies (54)

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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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Replies to "I am 58 years old and have almost identical symptoms. I am very healthy and active,..."

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?

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