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Post covid neuropathy/bfs?
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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Hello all. I relate to a lot of the things discussed in this thread. Though there are some differences / aspects that I've not noticed anyone mention yet, and that is mainly a very strong connection to pressure and bodily position. Sitting at my desk for long periods worsens symptoms, and sitting up in bed for any length of time is more-or less impossible without triggering the numbness and discomfort.
My first sign of a problem was a tingling / pins and needles in my left toes, exacerbated by sitting for long periods. This quickly expanded (though remained intermittent) and eventually came to affect all four of my limbs, peaking with numbness, tingling, nerve pain (both sharp and burning) and fasciculations / twitches in all extremities. The fasciculations are much worse at night when the muscles are relaxed. They take a back seat (but are sometimes still present) while I'm active during the day. I have had several notable flare ups/spikes. One seemed triggered by my giving blood a couple of months ago. I don't know why that might be. Something to do with blood pressure? Who knows.
Another interesting thing to note is that at some point before everything really kicked off, I had a few occurrences where the 'funny bone' nerves in my elbows were evidently physically enflamed, to the extent that resting my elbows on a table would be painful. The nerves hit the surface before the bone of my elbow did. This seems to me to point to some kind of systemic infection, but after that little flare up it ceased to be an issue. Those particular nerves are no longer enlarged or painful.
These symptoms all began more than a year after both my covid infection and the vaccine (+booster), so I don't know that there's much to connect symptoms to those, in my case.
Treatment-wise, I was referred to a neurologist, who sent me for various MRIs. These all came back normal. I've had multiple blood tests - these are also normal. The most recent specialist I saw is referring me for a nerve conduction test, and has also ordered more blood tests, this time looking at possible genetic indicators as well as the more usual bloodwork.
That most recent Neurologist suspects BFS in tandem with a possibly over-active Trigeminovascular complex (basically area of the brain responsible for filtering sensory input before relaying it to the conscious mind, if my understanding is correct). He also said that he's seen a few cases like this since Covid, and has noticed that Covid makes these symptoms last longer than they may have done pre-Covid. My next appointment with him is in six months, after the other tests are done.
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3 ReactionsSince my 2nd bout with CoVid I have had daily and nightly bouts of Restless Leg Syndrome that is constantly getting worse. It makes sleep impossible at times. My whole body jerks often and it starts with pins and needle jabs in feet and toes, then proceeds to full blown excruciating RLS. I take Ropinerol.25 MG but if taken beyond 7pm it starts the whole bloody syndrome before it stops it. I also take Manganese in a multivitamin plus B vitamins. I walk as much as possible given my heart condition which is another story and ride a bike for a limited time. I was diagnosed with Long CoVid and have been doing treatments and tried the compounded Naltrexone for a time which seemed to help but I started to get dizzy spells during the day and I quit it. Might want to give it another try though. CoVid also gave me vision changes and brain fog.
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1 ReactionThanks for mentioning the elbow--I think I have that right now and it's very painful. Good to know it's not 'just me.'
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1 ReactionI know it's frustrating to wait to see any specialist. I have had Covid twice and have many of the same symptoms you describe. The restless leg decreased a lot when I stopped eating sugar. Processed meats (bacon, pepperoni, lunchmeat) and sugar are both triggers for inflammation, which manifests in several ways, one is restless legs and another is the tingling and buzzing sensations.
Full disclosure--when I saw the neurologist and ran through bunches of tests, I did have peripheral neuropathy. I take meds now which also help with symptoms--as long as I stay on my diet (no sugar!) I feel almost normal again. No one has said that the Covid caused my PN, right now it's just idiopathic (fancy word for nobody knows, haha.)