Post covid neuropathy/bfs?

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.

Since 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.

Thanks for mentioning the elbow--I think I have that right now and it's very painful. Good to know it's not 'just me.'

I 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.)

Hi there, I have exactly the same symptoms as you described, triggered by Covid infection. I wonder how it continued with you? I hope better now?
best regards

Well. I’m a good 18 months in since my original post. I saw the neurologist in May 23, and while he did a basic neurological check and listened carefully to my story, he didn’t actually examine my twitches or look at my legs at all! He did however, immediately rule out anything sinister. He simply said it would likely wax and wane and hopefully go away, and then made it clear he felt it was psychological. While I appreciated the confidence it wasn’t sinister, I was quite miffed at the “it’s all in your head”.
Since then, it has largely remained. It does indeed wax and wane, largely because you get distracted, and it is certainly exacerbated by exercise and poor sleep but I have struggled to get to the bottom of triggers. Despite my scepticism, I even saw a therapist for 6 months but other than a nice chat, it made no impact on the twitches. I still believe it is not psychological given during periods of genuine stress ie moving house, work, it does not seem to get any worse nor does it improve with rest and holidays etc.
I contracted Covid again 3 months ago and I have to say it is definitely a lot worse since then.
I can only deduce it is viral triggered and there are lasting effects on the nervous system from Covid and each time it gets worse.
Even now, studies are starting to shed light on the brain impact and it’s troubling.
So I remain frustrated, though I have to say comforted in an odd way that after nearly 2 years of twitching I have not developed any worrying weakness or atrophy which I take to be a very positive thing. And hope it stays that way!
Good luck to all suffering x

@madmumtwitchy, thanks for following up with an update on your status and your May visit to the neurologist. Good to hear he ruled out anything sinister.

I'm sorry to hear that you were told, "It's all in your head," at that appointment.

Have you seen another neurologist since then for another opinion, or has your primary care doctor had any thoughts about what might be leading to the twitching you are experiencing?

Aarp’s newsletter did a great article on long Covid and how one can have it even if they had a mild case of Covid. I am very grateful that in my trips to about 10 specialists nobody dismissed my weird symptoms. Although none of them was able to come up with a definitive diagnosis, pretty much all of them said that long Covid behaves the way it wants to behave, and differently in different people. The best any of them was able to come up with was that my symptoms behave something like fibromyalgia or small fiber neuropathy, or we could call it long Covid, although my symptoms don’t meet the diagnostic criteria for either fibromyalgia or small fiber neuropathy. I’m fine with that. We’ll just deal with symptoms as they come up.

Honestly no. I don’t really see the point in going back! It’s something that I’m learning to accept and live with. Sleep is definitely the biggest factor - lack of and it goes haywire. But I’m trying to just find ways to block it out and not overthink it, when I do, it definitely gets more noticeable.

Yes, and when symptoms never leave and new ones crop up and a new groups of docs is added and none of the ones being seen talk w/ each other.. it's frustrating. I had such a horrible night Sun. and through today, Tues., that neither doc to whom I wrote responded. The neuropathy was burning; far more intense pain in my right leg, and more. It's just exhausting to keep explaining over and over. I'm learning to live w/ the tinnitus that resulted from COVID - even the hearing loss but neither hurts; they are annoying, whereas the neuropathy hurts horribly.