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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I have sensory and motor nerve damage after the Covid vaccine x 2 that is slowly improving. I control the nerve pain in my feet at night with 5% lidocaine patches prescribed by a podiatrist. To promote absorption of the lidocaine, I place a patch on the top of my foot where the skin is thinner. The patches allow me to avoid the systemic exposure to nerve pain medications and the side effects. Besides, the medications did not control the nerve pain.
Covid in my GI tract only 2 years ago. I developed gastroparesis & then started having leg & lower back pain. MRI scheduled Tues. Neurologist said he’s having numerous patients with similar complaints & finding spinal cord damage/neuropathy due to excessive inflammation from Covid. Anyone else discovering this?
I had a small amount of neuropathy in my feet-nothing bad; but, when I got COVID, that's when it went to the nerves in the lower part of my legs with excruciating pain, which has stayed with me since!!
I have has severe muscle fasciculations all over my body for the last 5 months now. I often describe it like a Christmas tree with lights constantly flashing everywhere. There is no pain, just continuously annoying muscle twitching from my calves, upper legs, ribs, chest, stomach, arms, hands and face. It tends to be less noticeable when I am busy, but I still notice it even if I am doing things like playing golf. I also get hand tremors that are accentuated if I do moderate physical activities, like washing the car and get fatigued doing minor physical exertion. Thankfully my neurologist is leaning towards BFS, after ruling out the MS, Tumors, ALS, Parkinsons as all tests have been normal to date.
But it has left me wondering about any connection to the Pfizer vaccine booster that I had in April. I have also read about a lady that suffering from Aura Headaches (kaleidoscope vision), which I have had a few since having my first Pfizer jab in 2021 and definitely having an experienced one since April. My neurologist is sending me off for more bloods and referral to another neuro specialist.
Hi, thanks for sharing. I was wondering how you are feeling right now? How did it go, do you still use the medication? Did your neurologist prescribed this medicine? Did you also have internal vibrations and/or pain anywhere in your body? Wish you fast recovery, thanks...
Still on the low dose naltrexone meds. 1 mg in the morning, and 1 mg at bedtime. No symptoms anymore!! 👍🏻 it’s been amazing!!
Thank you very much, happy to hear some people are finding peace slowly. Now I am thinking how to tell this to my neurologist who said I have overreactive nervous system (with the same symptoms as you).
My Neurologist would not prescribe this. It is not FDA approved for this, and she did not even know what it was. I found a integrative doctor, actually, Dermatologist, who was willing to prescribe. You’ll need to find a compounding pharmacist, I use Mail order with Carefirst specialty pharmacy.
Have you been checked for Myasthnia Gravis? I was recently diagnosed with this.
Thank you. I don't live in the US. I am researching on this medication and will need to find a way to have it. My symptoms have lately got bad. Thanks so much...