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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I have had mysterious symptoms for a few months as well. Some are similar to what you mentioned. I did not have Covid but my PCP and one Neurologist feels that it could have been triggered by a virus. I’ve been to 3 Neurologists and a Rheumatologist. They all have different diagnoses for my symptoms. It’s very frustrating. Good luck in your search. I hope you find relief.
Kat

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You describe exactly what I have going on. Tylenol blunts it a little for about 6 hours. I am on Medicinal Marijuana and so far that hasn't helped, but it has only been 2 months and the doctor says it takes 3-4 for helping Neuropathy. The random twitches and nerve pain plus neuropathy in my feet is difficult to cope with. Sorry to hear that Neurologists and a Rheumatologist haven't helped because that was where I was going to turn next.

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@sandywinters

You describe exactly what I have going on. Tylenol blunts it a little for about 6 hours. I am on Medicinal Marijuana and so far that hasn't helped, but it has only been 2 months and the doctor says it takes 3-4 for helping Neuropathy. The random twitches and nerve pain plus neuropathy in my feet is difficult to cope with. Sorry to hear that Neurologists and a Rheumatologist haven't helped because that was where I was going to turn next.

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The one thing that came out of all the appointments, was ruling out certain other diseases, that I was worried about. I had a multitude of testing done, EMGs, Bloodwork, MRIs, Skin biopsy. I am now on Gabapentin three times a day, which helps tremendously, but makes me drowsy.
Best of luck to you all with your heath!
Kat

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I had some neuropathy in my feet but bearable. When I got COVID is when the nerve pain got so terrible and remains today

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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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@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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I am sorry for your pain. I was told that this could be viral and testing was not always accurate. It is all so frustrating. The doctor just switched me from Gabapentin to Lyrica starting tomorrow. The Gabapentin was working to subdue the symptoms but not prevent them completely. Has anyone had successful symptom management with Lyrica?
Kat

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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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Yes. I have same situation over past 3+ years now. I too caught COVID twice and then caught the flu and I took have muscle twitching throughout, pins, needles, internal vibrations, heartbeat and pulse variations etc.
I have been to several neurologist, endocrinologist, gastroenterologist and cardiologist and none of them can pinpoint what I have or what caused all this BUT they all circle the wagons and give same repetitive answer trying to blame anxiety, stress and say my twitching is BFS.

I have had dozens upon dozens of tests from A-Z yet all come back normal.

HOW can tests come back normal when my body is so out of whack and I feel awful??

I've given up on any doctor figuring this out. All they want to do is write you a Rx for some anxiety or antidepressant drug and I am NOT taking them. Those drugs cause worse side affects then the symptoms I have.

I finally saw a Arrhythmia Dr two months ago and had a CAM device attached to my sternum and my life long irregular heartbeat did show up on those cardiac recordings as PAC AND PVC Arrhythmias but not AFIB.
MY Arrhythmia Dr said she believes my symptoms are from a over active and or malfunctioning VAGUS nerve problem which Vagus nerve problems fall under the Dysautonomia umbrella of Autonomic Nervous System malfunctioning

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Look up Autonomic Nervous System malfunction as it relates to Vagus Nerve overstimulation that could be caused by prior virus. The Autonomic Nervous System malfunctioning can cause all of these crazy and very debilitating symptoms

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@joannemm30809

Look up Autonomic Nervous System malfunction as it relates to Vagus Nerve overstimulation that could be caused by prior virus. The Autonomic Nervous System malfunctioning can cause all of these crazy and very debilitating symptoms

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I can relate 100% ... About 6 years ago I started having PVCs started seeing a cardiologist, which said no AFIB but just having a misfire of irregular heartbeats sometimes worst than others.. fast forward to last May I woke up to 3 brain shocks then started having left arm and face numbness and pins needles throughout my entire body.. all the blood tests showed nothing. This is crazy and frustrating !!

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