Post-COVID Neuropathy/Yale paper

Posted by jeindc @jeindc, Oct 1 11:12am

I'm cross-posting this to the post/long COVID group since others there have posted post-COVID neuropathy. One day those of us w/ post-COVID will be understood and they'll find prevention or help. https://www.yalemedicine.org/news/when-nerve-pain-and-numbness-are-linked-to-long-covid

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@kellysmail2016

Merry Christmas Hunh!
Neuropathy is a joy as well. The brain fog has made me forget friends names I’ve known for years. I was forgetting long time clients as well before I had to quit. I was a multitasker. I ended by not being able to do 1/4 of my workload. Not enough hours in a day to try and complete it. My brain is not fit for any job but not is my body now either.

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With each post and each article read, with symptoms increasing and no one with whom to talk, it is depressing. I try daily to still work - at 77 - and have to with fortunately little brain fog just body and mouth issues. Pain is exhausting and it's hard to explain to most.

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@jeindc

With each post and each article read, with symptoms increasing and no one with whom to talk, it is depressing. I try daily to still work - at 77 - and have to with fortunately little brain fog just body and mouth issues. Pain is exhausting and it's hard to explain to most.

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Oh that is terrible. 77. You should be able to rest and relax. The PEM is devastating, I know. Pain puts me down for days at a time. I’m thinking about a potty chair at 56. I can’t yet bare to do it. I’m here to talk if you like. I’m
Kelly. I try to get on daily but I miss days here and there cause I’m just too tired. What is your name?

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@jeindc

With each post and each article read, with symptoms increasing and no one with whom to talk, it is depressing. I try daily to still work - at 77 - and have to with fortunately little brain fog just body and mouth issues. Pain is exhausting and it's hard to explain to most.

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Do you have a post Covid Dr?

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@solmcaz

Had Covid 12-24-23 and have had nuropothy in both feet ever since.

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A fiery burning in the soles of the feet? Yes. But I can feel the floor and am fully functional if you don't count near
exhaustion after 3 minutes of walking.

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@kellysmail2016

Do you have a post Covid Dr?

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Sorta. After my PCP (of only 1.5 years after my PCP of 25 years retired) told me their practice wasn't even READING the google alerts I got and knew nothing about long COVID, I a) switched to a new practice and b) began looking for solutions. I saw the head of a major hospital's practice - one of the very few post-COVID docs in the area. I've seen him once where he, after my getting a 2 hour ultrasound and being told by a doc in his hospital system that I had lymphedema and referred to a fitter of wraps, I saw the post-C doc. He diagnosed some other things and gave me NO referrals except PT and massage therapy!

Not only is my neuropathy getting worse, the rash that I got with COVID has returned. The ER (2 visits), my then PCP, and the dermatologist I saw then (April - May 2023) did any lab work so there's no base line. My pain (severe spinal stenosis - and looking closely at the other pain post COVID) doc (laughing because I have never seen in my entire 77 years the total docs I see now!) who I'll see in person soon will look at all this. Next Mon. I will do a televisit w/ the post-C doc who doesn't seem terribly interested in studying me more.

Are we all case studies?

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@yaya77066

A fiery burning in the soles of the feet? Yes. But I can feel the floor and am fully functional if you don't count near
exhaustion after 3 minutes of walking.

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@yaya77066 - by chance did you have any bottoms of your heels peeling or blistering post COVID before the neuropathy?

Yes, walking from one room to another in our not-big-apartment is exhausting. I can tell I'm walking and 'feel the floor' too. It's that the burning wakes me often during the night.

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@jeindc

Sorta. After my PCP (of only 1.5 years after my PCP of 25 years retired) told me their practice wasn't even READING the google alerts I got and knew nothing about long COVID, I a) switched to a new practice and b) began looking for solutions. I saw the head of a major hospital's practice - one of the very few post-COVID docs in the area. I've seen him once where he, after my getting a 2 hour ultrasound and being told by a doc in his hospital system that I had lymphedema and referred to a fitter of wraps, I saw the post-C doc. He diagnosed some other things and gave me NO referrals except PT and massage therapy!

Not only is my neuropathy getting worse, the rash that I got with COVID has returned. The ER (2 visits), my then PCP, and the dermatologist I saw then (April - May 2023) did any lab work so there's no base line. My pain (severe spinal stenosis - and looking closely at the other pain post COVID) doc (laughing because I have never seen in my entire 77 years the total docs I see now!) who I'll see in person soon will look at all this. Next Mon. I will do a televisit w/ the post-C doc who doesn't seem terribly interested in studying me more.

Are we all case studies?

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Now I’m laughing at that. I think we are. Like lab rats. lol. I know I have chest pains. So bad at times I even sweat and vomit. Took over 6 months to get into a cardiologist. Then they did 2 stress tests (at hospital when rushed to er twice) at CAT scan, MRI and two ECHOs so far. Only a little thickening of the heart, yet I still get these attacks. Last one went into neck, jaw, left arm and back. I did bother going to hospital cause they say my heart is fine. My cardiologist said, go to er if this happens again. I asked, why? It’s a waste of my money. I think LC does things to you like ghost symptoms ( my term). Now the pain, neuropathy, joints, fatigue are all real and steady. I wonder if they have to catch the heart while it’s happening?? I have a halter monitor coming I am to wear for a month. To see is they can catch some of this. I have SVT. Prior problem and tachycardia is from COVID. So they are watching both of those too.

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@kellysmail2016

Now I’m laughing at that. I think we are. Like lab rats. lol. I know I have chest pains. So bad at times I even sweat and vomit. Took over 6 months to get into a cardiologist. Then they did 2 stress tests (at hospital when rushed to er twice) at CAT scan, MRI and two ECHOs so far. Only a little thickening of the heart, yet I still get these attacks. Last one went into neck, jaw, left arm and back. I did bother going to hospital cause they say my heart is fine. My cardiologist said, go to er if this happens again. I asked, why? It’s a waste of my money. I think LC does things to you like ghost symptoms ( my term). Now the pain, neuropathy, joints, fatigue are all real and steady. I wonder if they have to catch the heart while it’s happening?? I have a halter monitor coming I am to wear for a month. To see is they can catch some of this. I have SVT. Prior problem and tachycardia is from COVID. So they are watching both of those too.

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Oops on so of my words. Typed too fast and didn’t proofread.

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@jeindc

@yaya77066 - by chance did you have any bottoms of your heels peeling or blistering post COVID before the neuropathy?

Yes, walking from one room to another in our not-big-apartment is exhausting. I can tell I'm walking and 'feel the floor' too. It's that the burning wakes me often during the night.

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I know that question was to another but my feet burn, pain etc too. I feel my heartbeat on my right one all the time. Mine get dry and I feel like bottoms could crack. I try and lotion as much as I can. I also go get pedicures about 1 time every 6 weeks. My only fun outing really. Soothing in the massage chair. Feet feel great for a couple days. 🤭

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@kellysmail2016

I know that question was to another but my feet burn, pain etc too. I feel my heartbeat on my right one all the time. Mine get dry and I feel like bottoms could crack. I try and lotion as much as I can. I also go get pedicures about 1 time every 6 weeks. My only fun outing really. Soothing in the massage chair. Feet feel great for a couple days. 🤭

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I get pedicures when I can - usually every 6-8 weeks. BUT because of the damaged skin from COVID, I have to be cautious of what is done.

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