Neuropathy post-Covid infection: Is there treatment that helps?

Posted by erice10 @erice10, Nov 11, 2021

Since having Covid in Jan. of 2021, I have had constant numbness and joint stiffness in my feet. Is there a treatment or therapy to help with this? Is there a study researching this kind of problem in Covid long haulers? I had an ultrasound checking the blood circulation in my legs and everything was fine.

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It almost sounds like you had Fibromyalgia more than Neuropathy.

I've been dealing with this probably 10 years now. 1800mg of Gabapentin is considered the minimum therapeutic dose. 3600 is the max but then you get the side effects which for me is serious tiredness. The Gaba helps a little but is no magic pill. I discussed Lyrica with my MD but he says there is no real benefit to that.

The only thing left are opiates. I reserve Tramadol for very bad nights. I have found a couple of heavy duty Tylenol sometimes has the effect of just taking the edge off but that's hit or miss.

The bad thing about this incident with the vaccine and increased Neuropathy has given me a window of what the future holds and it's not good. For now I'm back to normal.

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@nelsone

It almost sounds like you had Fibromyalgia more than Neuropathy.

I've been dealing with this probably 10 years now. 1800mg of Gabapentin is considered the minimum therapeutic dose. 3600 is the max but then you get the side effects which for me is serious tiredness. The Gaba helps a little but is no magic pill. I discussed Lyrica with my MD but he says there is no real benefit to that.

The only thing left are opiates. I reserve Tramadol for very bad nights. I have found a couple of heavy duty Tylenol sometimes has the effect of just taking the edge off but that's hit or miss.

The bad thing about this incident with the vaccine and increased Neuropathy has given me a window of what the future holds and it's not good. For now I'm back to normal.

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Glad you’re at least a bit better for now, even though it’s temporary. I’ve learned to be thankful for the good days as I’ve been sick for over 2 years. Covid left me with a very serious lung condition that’s permanent and will affect me for the rest of my life. None of this is any fun, I hear ya.
Did covid exacerbate your neuropathy since it was already something you had? I’m surprised opiates and over the counter meds help your nerve pain but the proof is in the pudding. I do have a medical background and know that neuropathy is tough to treat. I don’t have fibromyalgia but I had excruciating burning pins and needles like I was on fire, then intense muscle pain where the pins and needle pain was and then extreme muscle weakness in the same places to the point of literally not being able to walk. This was at its worst when I had covid but came back to some extent after the vaccines. Gabapentin is a difficult drug to take and it’s hard to get the right dose, especially if the pain level keeps changing. It’s also extremely hard to get off of. You have to titrate down for a long time and it can give you untoward psychological side effects so be careful if you change your meds. I thought I was going to lose it when I went off! I also decided to not get anymore boosters because of the side effects, especially since it seems that they really don’t know enough yet about the actual protection they give you and the virus mutates constantly. I hope you find some permanent relief from your pain, but more importantly, I hope it goes away!

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@pacer3702

Did you have the Covid vaccines? Many of us are experiencing the symptoms you describe as a side effects of the vaccines. In many cases, the nerve damage is caused by a delayed autoimmune reaction that develops over a period of months. It seems odd that your nerve symptoms would take 1.5 years to appear, if they resulted from Covid. The side effects of the vaccines, which are new technology, are poorly recognized by the medical community. To learn more, you could join the Neuro V Long-Haulers group on Facebook.

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Hello, I am new to the group. I want to ask what the specific symptoms people have from the nerve damage that happened months after the vaccine?

5 mos after I had vaccine, I had heartburn/chest pain, vertigo-those resolves and then headache around my right eye for 8 mos. Trying to figure out if it is from the vaccine & how to resolve the pain. Thanks!

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@jazzygirl5

Glad you’re at least a bit better for now, even though it’s temporary. I’ve learned to be thankful for the good days as I’ve been sick for over 2 years. Covid left me with a very serious lung condition that’s permanent and will affect me for the rest of my life. None of this is any fun, I hear ya.
Did covid exacerbate your neuropathy since it was already something you had? I’m surprised opiates and over the counter meds help your nerve pain but the proof is in the pudding. I do have a medical background and know that neuropathy is tough to treat. I don’t have fibromyalgia but I had excruciating burning pins and needles like I was on fire, then intense muscle pain where the pins and needle pain was and then extreme muscle weakness in the same places to the point of literally not being able to walk. This was at its worst when I had covid but came back to some extent after the vaccines. Gabapentin is a difficult drug to take and it’s hard to get the right dose, especially if the pain level keeps changing. It’s also extremely hard to get off of. You have to titrate down for a long time and it can give you untoward psychological side effects so be careful if you change your meds. I thought I was going to lose it when I went off! I also decided to not get anymore boosters because of the side effects, especially since it seems that they really don’t know enough yet about the actual protection they give you and the virus mutates constantly. I hope you find some permanent relief from your pain, but more importantly, I hope it goes away!

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I had the Covid booster (my second) and the initial shots and booster made me sick for a day or so but nothing else. I got the second booster in the morning and 3 hours later my feet just went into overdrive with the pain. Luckily it only lasted a day or so and things went back to my normal.

I've had several Emg tests and a skin punch biopsy and my neurologist told me it was basically to cover his butt because sooner or later (he said) you're gonna need serious pain meds and now we know you have serious peripheral neuropathy so I can prescribe them when you need them. It's the only treatment. Maybe I could chop my feet off, I don't know. I've tried all kinds of supplements and none had any effect.

My pain is complex. Part A are disagreeable sensations that are 24/7 and I just live with them. Nothing touches them medication wise. Areas of numbness, super hyper sensitivity in other areas and all my toes that feel like wooden sticks that don't fit right. Part B is the bad stuff. Sometimes it feels like someone takes a pencil and is sticking it between my toes and is hammering it down. Mostly it's pulses of pain so piercing it's unbearable. I say this as someone who has been through bad Kidney Stone attacks in the past. This is when the Tramadol comes into play. It works great. If I didn't have it I'd be in big trouble.

Maybe we should have a "big pain" contest here and see who wins.

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@sandy1522

Hello, I am new to the group. I want to ask what the specific symptoms people have from the nerve damage that happened months after the vaccine?

5 mos after I had vaccine, I had heartburn/chest pain, vertigo-those resolves and then headache around my right eye for 8 mos. Trying to figure out if it is from the vaccine & how to resolve the pain. Thanks!

Jump to this post

As you can see I had serious issues after the second booster but they went away within days but I know many have serious long lasting issues.

This is unrelated but at the height of Covid I got my Flu shot like I always do but this time unknown to me they gave me the senior shot. 10 hours later I was in the hospital. I was so sick I thought I was dying. My O2 was 80%.They thought I had covid but I didn't. it was a reaction to that shot but they won't admit it. I was discharged 3 days later but I was left with this horrible cough which lasted 8 months. It was so bad I was coughing up blood.

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@sandy1522

Hello, I am new to the group. I want to ask what the specific symptoms people have from the nerve damage that happened months after the vaccine?

5 mos after I had vaccine, I had heartburn/chest pain, vertigo-those resolves and then headache around my right eye for 8 mos. Trying to figure out if it is from the vaccine & how to resolve the pain. Thanks!

Jump to this post

Welcome @sandy1522, Not sure how easy it is to figure out if it's from the vaccine but hopefully you can find a treatment the deals with the pain. That said there is some research on the topic that is from May 2022 -- Peripheral Neuropathy Evaluations of Patients With Prolonged Long COVID: https://nn.neurology.org/content/9/3/e1146

Have you discussed your symptoms with your doctor or a neurologist?

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@johnbishop

Welcome @sandy1522, Not sure how easy it is to figure out if it's from the vaccine but hopefully you can find a treatment the deals with the pain. That said there is some research on the topic that is from May 2022 -- Peripheral Neuropathy Evaluations of Patients With Prolonged Long COVID: https://nn.neurology.org/content/9/3/e1146

Have you discussed your symptoms with your doctor or a neurologist?

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I have been to 5 different doctors & Neurologist. Many tests and 3 MRIs. Don’t have an explanation. Don’t want to assume it’s COVId related if it’s something else. but at this point still exploring all angles. Thanks for responding!

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@sandy1522

I have been to 5 different doctors & Neurologist. Many tests and 3 MRIs. Don’t have an explanation. Don’t want to assume it’s COVId related if it’s something else. but at this point still exploring all angles. Thanks for responding!

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sandy1522, you may benefit from focusing on the B vitamins and magnesium. Thiamine requires magnesium to become bioactive and once activated it can activate B6. Magnesium is also needed to activate vitamin D. Thiamine is critically needed by the brain, gut and nervous system however anti thiamine factors diminish or destroy thiamine. A comprehensive list can be found in the stuttersence link. Water soluble thiamine forms don't pass the blood brain barrier as efficiently as fat soluble forms. The nootropicsexpert link explains further the fat soluble forms which benefit being taken with a meal. The B vitamins work better together and I encourage you to become familiar with the others. Also check out sublingual fast melt Methylcobalamin B12. It helps repair nerves. Always consult your health care provider before using any supplement.
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://nootropicsexpert.com/vitamin-b1-thiamine/

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@nelsone

As you can see I had serious issues after the second booster but they went away within days but I know many have serious long lasting issues.

This is unrelated but at the height of Covid I got my Flu shot like I always do but this time unknown to me they gave me the senior shot. 10 hours later I was in the hospital. I was so sick I thought I was dying. My O2 was 80%.They thought I had covid but I didn't. it was a reaction to that shot but they won't admit it. I was discharged 3 days later but I was left with this horrible cough which lasted 8 months. It was so bad I was coughing up blood.

Jump to this post

This is unrelated too: After a senior Flu shot my breasts & nearby area became unbelievably lumpy. I thought I was dying too. Do any monthly breast exam before receiving the shot! The Breast doctor I saw afterward advised me to take vaccinations in the same arm.

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I, too, got a bad reaction to the senior flu vaccine, my first. I already had long covid with a bad cough but my Dr thought it would be ok. I should have listened to myself and not have gotten it. This could be an assumption but my cough got worse and I did have covid pneumonia in 2020. It’s alarming to read all these horror stories.

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