1. < Post-COVID Recovery & COVID-19

Long COVID neuropathy symptoms

Posted by crazymomof5 @crazymomof5, Sep 21, 2023

Jan 2022 I got COVID. Disclosure, I already have an autoimmune disease and my immune system suppressed. About 2-3 days into COVID I developed neuropathy in my extremities including numbness in my lips and tongue. Today I am still struggling with neuropathy and my neurologist is suggesting I start on cymbalta. Anyone else dealing with neuropathy as long COVID and what tests treatments have helped? Any assistance with a long COVID clinic?

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earlylonghauler | @earlylonghauler | Sep 22, 2023

I had nerve pain about 3 months after covid, affecting face and legs. It lasted several weeks, long enough to consult a neurologist, who was unable to help. This was early 2020 when we did not know a lot about neurological damage covid can cause. The nerve pain eventually went away on its own after a few months. I cannot comment on cymbalta. As far as long covid clinics - may depend on what there is in your area, or if you find a good one to travel to. I am also looking for a good post covid doctor or clinic to connect with. After 3 years of long covid I now have epilepsy.

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2 replies
iamawriter | @iamawriter | Sep 22, 2023

Nephropathy in feet, hands and left thigh. Was prescribed gabapentin but didn't fill the script. It does not help me. It's been two years and there is some improvement. Treatment: PT - not helping much...stretching routine.. and donating blood. With blood donation (2) noticed improvement in left foot. Whether it was the blood donation or just coincidence, who knows? Definitely donating blood again, though.

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kayabbott | @kayabbott | Sep 23, 2023
In reply to @earlylonghauler "I had nerve pain about 3 months after covid, affecting face and legs. It lasted several..." + (show)
@earlylonghauler

I had nerve pain about 3 months after covid, affecting face and legs. It lasted several weeks, long enough to consult a neurologist, who was unable to help. This was early 2020 when we did not know a lot about neurological damage covid can cause. The nerve pain eventually went away on its own after a few months. I cannot comment on cymbalta. As far as long covid clinics - may depend on what there is in your area, or if you find a good one to travel to. I am also looking for a good post covid doctor or clinic to connect with. After 3 years of long covid I now have epilepsy.

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If you haven't yet, you might consider getting tested for celiac (celiac blood panel). You have to be still eating wheat (gluten) for the test to be accurate. At least with celiac disease, gluten can trigger seizures and is associated with neuropathy. Covid has resulted in celiac or gluten intolerance for some and going off gluten is easier than higher doses of keppra or dilantin.

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laja | @laja | Sep 23, 2023

I too have neuropathy in my limbs and tongue. < y skin tingles at times and other times it burns to the point I am in tears. I use low dose Ativan 0.25 mg twice a day as needed. I only take it as needed rather than routinely because it can be addictive. I never took anything stronger than TYLENOL my whole life for anything so taking Ativan is not something I want to depend on. But I have no other meds that helped. Tried Cymbalta and it did not work. Tried another anxiolytic like Cymbalta and is made me feel wishy washy in the mind. My mental clarity means everything to me so I did not want anything that would make me feel mental fog. I already have that from the covid on and off. I wish that they would find a fix for all of us long haulers. I am in some form of torture every day and I nickel and dime my way through the day with Tylenol, distractions, pain numbing creams and the Ativan. If you find that there is anything out there other than medications like Cymbalta or the like, please let me know. This has gone on long enough for us.

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2 replies
crazymomof5 | @crazymomof5 | Sep 23, 2023

Yes I wish they could find the link between COVID and neurological pathways! Kinda like shingles from chicken pox but all extremities and yes, my tongue and lips tingle
Too.

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1 reply
elliep | @elliep | Sep 24, 2023
In reply to @laja "I too have neuropathy in my limbs and tongue. < y skin tingles at times and..." + (show)
@laja

I too have neuropathy in my limbs and tongue. < y skin tingles at times and other times it burns to the point I am in tears. I use low dose Ativan 0.25 mg twice a day as needed. I only take it as needed rather than routinely because it can be addictive. I never took anything stronger than TYLENOL my whole life for anything so taking Ativan is not something I want to depend on. But I have no other meds that helped. Tried Cymbalta and it did not work. Tried another anxiolytic like Cymbalta and is made me feel wishy washy in the mind. My mental clarity means everything to me so I did not want anything that would make me feel mental fog. I already have that from the covid on and off. I wish that they would find a fix for all of us long haulers. I am in some form of torture every day and I nickel and dime my way through the day with Tylenol, distractions, pain numbing creams and the Ativan. If you find that there is anything out there other than medications like Cymbalta or the like, please let me know. This has gone on long enough for us.

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i was given Zoloft which did nothing.
LDN is giving me energy to have a life again, but it is not helping with symptoms.
i have internal tremors and neuropathy symptoms.

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earlylonghauler | @earlylonghauler | Sep 24, 2023
In reply to @crazymomof5 "Yes I wish they could find the link between COVID and neurological pathways! Kinda like shingles..." + (show)
@crazymomof5

Yes I wish they could find the link between COVID and neurological pathways! Kinda like shingles from chicken pox but all extremities and yes, my tongue and lips tingle
Too.

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On covid and neuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9138404/

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dyannhill | @dyannhill | Sep 25, 2023
In reply to @earlylonghauler "I had nerve pain about 3 months after covid, affecting face and legs. It lasted several..." + (show)
@earlylonghauler

I had nerve pain about 3 months after covid, affecting face and legs. It lasted several weeks, long enough to consult a neurologist, who was unable to help. This was early 2020 when we did not know a lot about neurological damage covid can cause. The nerve pain eventually went away on its own after a few months. I cannot comment on cymbalta. As far as long covid clinics - may depend on what there is in your area, or if you find a good one to travel to. I am also looking for a good post covid doctor or clinic to connect with. After 3 years of long covid I now have epilepsy.

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After a month of heavy covid symptoms I finally test neg. I have numb feet mouth and throat..my throat forgets how to swallow and my oxygen drops to 80's!!!
My Dr. Just looks at me!

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dyannhill | @dyannhill | Sep 25, 2023
In reply to @laja "I too have neuropathy in my limbs and tongue. < y skin tingles at times and..." + (show)
@laja

I too have neuropathy in my limbs and tongue. < y skin tingles at times and other times it burns to the point I am in tears. I use low dose Ativan 0.25 mg twice a day as needed. I only take it as needed rather than routinely because it can be addictive. I never took anything stronger than TYLENOL my whole life for anything so taking Ativan is not something I want to depend on. But I have no other meds that helped. Tried Cymbalta and it did not work. Tried another anxiolytic like Cymbalta and is made me feel wishy washy in the mind. My mental clarity means everything to me so I did not want anything that would make me feel mental fog. I already have that from the covid on and off. I wish that they would find a fix for all of us long haulers. I am in some form of torture every day and I nickel and dime my way through the day with Tylenol, distractions, pain numbing creams and the Ativan. If you find that there is anything out there other than medications like Cymbalta or the like, please let me know. This has gone on long enough for us.

Jump to this post

My throat forgets how to swallow! My mouth is numb as well as my feet
Nothing seems to help

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2 replies
dyannhill | @dyannhill | Sep 26, 2023
In reply to @dyannhill "My throat forgets how to swallow! My mouth is numb as well as my feet Nothing..." + (show)
@dyannhill

My throat forgets how to swallow! My mouth is numb as well as my feet
Nothing seems to help

Jump to this post

My Dr. said a part of my brain may have been affected the part that controlls swallowing?? Makes sense I guess. But will it recover? Unknown.

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