1. < Neuropathy
Profile picture for cindy62

I am curious to know other’s stories of post viral neuropathy.

Posted by cindy62 @cindy62, Oct 20, 2019

I am curious to know other’s stories of post viral neuropathy. I acquired a peripheral neuropathy out of the blue after a viral illness; and, have been dealing with it for almost a year. My symptoms include tingling, burning, and weakness in arms,hands, feet, and lower legs along with muscle twitching. I am trying to limit prescription medications and rely more on supplements, exercise, etc. Looking for some positive feedback on this crazy ailment!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for piross1528
piross1528 | @piross1528 | May 31, 2022

Hey Cindy-I have this diagnosis also. Mine is 10 months old and unfortunately has not gotten better. I am wondering if you have healed at all? Share If you can about your experience. Hope all is well.

REPLY
Profile picture for truebeliever
truebeliever | @truebeliever | Aug 8, 2022
In reply to @corydeburd "Hi folks, It's been great to stumble onto this community -- I've learned a lot from..." + (show)
Profile picture for corydeburd @corydeburd

Hi folks,

It's been great to stumble onto this community -- I've learned a lot from reading everyone's stories. I was hoping to ask for some advice dealing with a similar situation, possibly post viral neuropathy (though not for sure -- no official diagnosis). This is fairly recent for me & dealing with it has been confusing so any advice from the experienced would be so helpful.

Symptoms:
Following a stubborn but not intense respiratory illness (swollen throat for 1-2 months, but otherwise not even a fever or fatigue), I started developing paresthesias in my arms &/or legs. So I might variously feel like they're vibrating, being electrocuted, or about to go numb. The worst part is probably sleep, since perhaps 2-3 nights a week I wake from sleep with vibrating arms or legs -- the feelings are worst when I am still, though on bad days I feel buzzing/crawling when I'm up & about. On the other hand, on good days I feel completely normal & on medium days I've had success taking away the worst symptoms with a low Lyrica dose.

It's been about 6 months of such feelings, with some ups & downs but no very obvious trajectory. I might have other symptoms (small muscle twitching/fasciculations, "lump in the throat"/globus sensation, muscle pain, joint pain) but it's hard to be sure.

Tests:
I had a modestly abnormal nerve conduction study about 5 months ago & plan to repeat it soon. Otherwise, basically everything else looks normal (blood sugar, thyroid, CBC, ESR/CRP, ANA, COVID antibody [weeks after my respiratory conditions], Celiac...).

Questions:
(a) Are there any conditions I should look into beyond "post viral neuropathy"?
(b) Is it even realistic to ever expect a more specific diagnosis? It seems a number of people here don't get something specific
(c) Should I worry about symptoms getting (slowly) worse? & how might I tell given the daily ups & downs?
(d) How can I tell if certain secondary symptoms (e.g. muscle twitches) are caused by my main condition (e.g. nerve damage) or are unrelated (e.g. stress/sleep issues)?
(e) I guess finally, how do I get physicians to take the problem seriously? I think from their perspective, a fairly young person walks in & says he has strange sensations, but has no difficulty walking, no numbness, no real "pain," & basically no abnormal tests except one (now old) somewhat abnormal NCS, so overall doesn't seem critical.

Thanks for listening & sorry for the long post. I'm not looking mostly for specific answers, but any sort of words of wisdom on how to handle & think about a condition like this. Appreciate your thoughts 🙂

Jump to this post

hello, this sounds very similar to my condition. I am now going on7 years of sleep deprivation due to muscle tension , pain and vibration at nighttime. I have gone through multiple medications and am now trying to adjust to lyrica. I am starting at 25 mg Three times a day, with the goal to take 50mg three times a day. I am now speeding through the morning and afternoon with out of body feelings, and sleepless at night. I do not need help during the day. Only at night.
I notice you use Lyrica only on bad days. I did not know this was an option. Would you tell me the dosage you take for nighttime pain, and what time is most effective.
Thank you for any advice you can provide.

REPLY
Profile picture for ctech
ctech | @ctech | Mar 31 4:31pm

Thank you so much for sharing this. My mom has also had COVID and developed postviral vagopathy.

We found broccoli sprouts cured her of this. (You could also eat broccoli, but we found due to the levels of sulforaphane, broccoli reduces inflammation much slower. )

Buy them fresh at Sprouts, has to be eaten raw.
The supplements Alpha Lipoic acid with Lcarnitine has also helped. They are specifically for nerve inflammation relief.

She also takes B12/B complex. For nerves as well

Hope that helps!! Let me know if it does

REPLY
Profile picture for felixo
felixo | @felixo | Mar 31 7:31pm
In reply to @lisalucier "Hi, @cindy62 - just wanted to clarify what you were meaning about neuropathy following a virus...." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Hi, @cindy62 - just wanted to clarify what you were meaning about neuropathy following a virus. I had postherpetic neuralgia after having shingles, a virus caused by the chickenpox (herpes zoster) virus https://www.mayoclinic.org/diseases-conditions/postherpetic-neuralgia/symptoms-causes/syc-20376588. Is this what you had in mind?

Jump to this post

Lisa, please, I need your opinion and experience.
My wife had Shingles about one year ago and she was left with an intense "Postherpetic Neuralgia" . Do you know of any solutions to regenerate the nerves and their myelin affected?
Thanks!

REPLY
Please sign in or register to post a reply.