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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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Thank you! I work with a compounding pharmacy ( don't know yet if they will make it), but I will call them today to ask.. If not, I'll try the one you use! But same as you, no doctor has been able to help me, and the neurologist was basically useless after 5 visits and multiple tests he refused to give me a diagnosis and has not released test results. I have a new GP and I hope she may be more sympathetic.
I am curious, why did you decide to go up to the higher dose? Did the low dose stop working for you?
Are you combining with other medications or are you now taking only the LDN?
I really appreciate your reply, and good to know you are finding relief!!!! Yah!
These are good questions. I believe I wanted to titrate up because everything I read said that the optimal dosage was 4 mg. But it seems silly to have to take more if the dosage I’m at now is optimal. I did not get full relief until I reached 1.5 mg. My tablets were 2 mg tablets so it just made sense to try to push up to two and then settle in.
I take other nutritional substances, like NAC, and lipoic acid. They helped me a little bit before I started LDN. I routinely take magnesium, D, Selenium, and a multivitamin. I do not take any other medication’s.
I learned about LDN from TikTok. Crazy, right? My favorite pharmacist is Jade @ldn_direct. I have asked her many questions, and she always gets back to me. She recommends the same pharmacy I use. She is a wealth of knowledge, and if you can watch her videos, I think you’ll be very pleased.
Hi There, I have a very similar story and symptoms and after communicating with a very helpful person on this thread I have decided to push for some nerve conductivity testing and some other tests. If I can find any answers I will share them on this site. I am wondering if you have found anything helpful so far. Kind regards Martin
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2 ReactionsHey we are in this together !!! I have been dealing with this since November well that’s when I felt the twitches begin, I had a car accident , some what I felt normal life situations not to much but we just are so prone to situations we dim them down when we really should deal with them accordingly !! So I guess the accident trauma , and my usual over load of overthinking and anxiety , then I do remember coming down with a little viral something then the twitches manifested!!! They come and go o have seen everyone had MRI, neurologist is finally doing a an EMG , but totally believes it’s BFS
Hello!
We sound very similar! I am a 47-year-old woman who was hospitalized with Covid in the fall of 2021. I don't get stressed easily, nor am I an anxious person. I didn't have any medical issues aside from migraines, so it was just unlucky that Covid hit me hard. Two days after going home my face, tongue, hands, and feet started tingling and feeling numb. Then the muscle spasms started and I also had shooting pains like zingers. It was really concerning so I went to my primary physician, who sent me to a neurologist. They did a nerve conduction test that was negative for large fiber damage. He said that I could have small fiber neuropathy but the only way to tell was to do a biopsy and he didn't want to do that. Instead, he said he would start me on Gabapentin and told me to take an Alpha Lipoic Acid supplement. The Gabapentin helped with the zingers and dulled some of the tingling. I made sure to keep my hands and feet warm, as it was always worse if they were cold. It took about a year to improve and then I got Covid again, but not nearly as bad. Regardless, the spasms and zingers returned. It took another year to improve and then I was able to stop the Gabapentin. I still have a burning in my tongue. I hope that in your case, time will heal and perhaps you will need some medication to help you along. Unfortunately for me, I had a simple toe surgery in September and the anesthesiologist damaged the large nerves in my left leg and foot with a nerve block. This pain makes my Covid neuropathy seem easy and my neurologist does not think it will be able to heal.
No matter what, advocate for yourself. It is not as common to have with Covid, so I don't want you to feel alone. I really get it. Don't hesitate to reach out! I'm more than happy to chat. Hang in there!
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1 ReactionSorry to hear of your troubles! I have small fiber neuropathy with similar symptoms as yours. I too had two bouts of Covid and stopped teaching as a result of fatigue. I have found that eliminating sugar from my diet helped immensely with the leg cramps and burning sensations. I still have some tingling and numbness. Just wanted to share in case this helps you. Good luck!
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2 ReactionsI have been dealing with the same symptoms since August 2023. Started with muscle fasciculations all over my body. I also have hand tremors as well. I have had several emg's by 3 different neurologists and they have all come back saying BFS. Recently, I am getting muscle pain which I have not had before. All blood work is normal and I strongly believe it was initially started with my Moderna shot in May 2021 and symptoms started to progress each month. I caught Covid in May 2022 and believe the combination of vax and covid put my nervous system into over drive. All doctors have said it's anxiety but I am not buying it. Have you found any relief or have symptoms changed for you since your last post?
Yes I have been dealing with the same issues after my vax and catching Covid. Muscle twitching, involuntary jerking movements, tremors, and just a feeling of "internal vibrations". I saw 3 separate neurologist who diagnosed BFS (Benign Fasciculation Syndrome). I still have it after 9 months and it comes and goes. Sometimes I don't notice it for a few days or a week and then sometimes comes raging back, especially when I'm physically tired or worked out. They all have said it's anxiety related but I think Covid has ramped up my nervous system and everything is in hyper drive.
Welcome @mikenewyork24, I'm sorry to hear that you have developed BFS following a Covid vaccine. There are quite a few different discussions and comments on BFS where members have shared their experience that you might find helpful. Here is a link with the search results that you may want to read through to see if it helps - https://connect.mayoclinic.org/search/discussions/?search=BFS.
Here is a related reference that may be helpful:
"BFS after vaccination, together with already well-known neuropathic pain, may point to possible (sensory or motor) neuronopathy as a possible vaccination side effect."
--- Benign Fasciculation Syndrome and Migraine Aura without Headache: Possible Rare Side Effects of the BNT162b2 mRNA Vaccine? A Case Report and a Potential Hypothesis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8780563/
Did you report your adverse side effects? - https://vaers.hhs.gov/
I had a similar experience. My post Covid syndrome started September 2023. I relate to so many symptoms you listed and those found on this thread. Plus, smell/taste disorder, which is currently the most disturbing. I also have type 1 diabetes, which adds another layer of aggravation. Just wanted to add that my neurologist said I didn’t have neuropathy (referred for diabetic neuropathy, but also for smell/taste by ENT), despite tingling in hands and feet, plus numbness in feet and burning. Symptoms started after covid, also body wide fasciculations, adrenaline rushes, phlegm in throat, rashes, insomnia, congestion and burning throat. NOTE: I had a Vitamin b12 deficiency as well, that was treated and resolved April 2023. Did that contribute? Has anyone had vitamin deficiencies checked?
At this point, I really don’t know what caused the symptoms. What I did experience was a disappearance of the twitches. Burning spots 98% gone. Tingling gone. And foot numbness almost gone. Sadly, my smell/test disorder remains though.
So, if the LC caused neuropathy, how can it improve? Or, maybe something else caused it. It’s confusing. I’m very grateful. I tried Gabapentin, but couldn’t take due to vision side effect. I engage in daily exercise, good diet and vitamins/supplements. Oh, and talk therapy. This ordeal has been extremely stressful! Most people have no idea how it can impact your life.