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

I had COVID about 25 months ago before the vaccine. I have had balance problems ever since and have to walk with a cane or use a walker. Even then I can't go more than 50 yards before sitting down. I have gone to my doctor, pain doctors, a neurologist, physical therapists, balance experts and I still am no better. Has anyone else had this experience and does anyone have a suggestion where to turn?

Welcome @kentkemmerling1949, I see that @britnoor responded to your first post in another discussion here - https://connect.mayoclinic.org/comment/812158/ with a similar problem following COVID and their experience. There is another discussion you might want to take a look at to see if it might offer some help:

--- Mayo Educational Visit with Post COVID Clinic: https://connect.mayoclinic.org/discussion/mayo-educational-visit-with-post-covid-clinic/.

Have you thought about seeking help at a COVID Clinic?

OMG! I didn't even consider that possible connection! My sacrum,just above the tailbone, gets all twingy and tingling,at moments I feel my legs will get paralyzed during it!

The neuropathy is awful. Mine started about 5-6 weeks after having Covid the first time (July 2020). I’ve had Covid twice, both time were mild. It’s the post-Covid symptoms that torment me every single day. I was diagnosed with Covid toes/feet November 2020. I had it much earlier, just never went to the Doctor till I mentioned it to my primary physician on a routine check up. The buzzing used to be bad in my feet and body as well-not as bad these days…just ever now and then. Then, shortly after being diagnosed with Covid toes/feet, I was diagnosed with Raynaud's. The neuropathy is so bad in both feet, I’ve seriously considered switching jobs (nurse at a local hospital). I’m on my feet so much, there are days, I can barely walk on them, so frustrating. Feels like they are on fire, like I’m standing in a fire ant nest, being stung over and over. They get hot, go numb, and tingle something awful. I’ve seen a Chiropractor (heard they could do ankle block injections-the doctor wasn’t interested in that treatment-go figure), Podiatrist (increased my Lyrica and stressed about good footwear), and Neurologist for my problems. The Neurologist placed me on Amitriptyline, which helped more than the other meds. helped the pain, and helped me sleep-but, I was gaining too much weight on the medication, so I weaned myself off. The extra weight isn’t good for my feet or my body. I’ve also taken weekly B12 (didn’t help). I’m also taking Lyrica 200mg daily. I have found that wearing Hoka or Oofos shoes help when walking at work so much, helps with the neuropathy pain (the way the shoes are made). I have found that tighter shoes and compression socks make me have a flare up, so I have to be very careful of what shoes and socks I wear now. Also, using a TENS unit at home helps, along with using Absorbine Jr. to rub on my feet at night. I have found that certain foods cause my neuropathy to flare up, as well (salty, processed foods and red meat). I attached a few pictures of what my feet do-turn different colors and now, where I have Raynaud's, my toes will get Snow White (not pictured) and ache to the bone. I have developed autoimmune issues, they’re just not sure what exactly, because everything has come back negative. My immune system is in overdrive and hypersensitive. I’ve not had the vaccines, cause my primary doctor said he didn’t recommend it, due to my body’s immune system being so out of whack. Hope this is helpful.

I have sensory and motor polyneuropathy due to the Covid vaccines. What has helped my recovery is wearing shoes with thick cushioned insoles, but then I also add Dr. Scholl's gel inserts. I like SAS shoes the best. I place cashier's mats below my sinks at home and wherever I need to stand at work. Kohl's.com has a great selection. At night, I use 5 percent Lidocaine patches to control the nerve pain. I'm able to avoid using amitriptyline by using the Lidocaine patches.

Thank you for your helpful post. I had Covid in 2021 and was very sick. One of the symptoms was severe pain in my legs. Since then I have developed tingling in my hands and feet which really only bothers me at night when I try to sleep. I have not had any vaccines, am 71 years old, and have been on a low carb, gluten free diet for almost 3 years and weigh 120 lb. I have never smoked or drank alcohol. I do drink coffee but am going to cut back on or eliminate it that to see if it helps the nightly pain and tingling in my legs and feet. I exercise daily and get at least 10,000 steps. I don’t want to take any prescriptions if possible because of all the side effects. I do take magnesium, vitamin B12, zinc, vitamin C and vitamin D. I just started using compression socks at night with some relief.

Hi..I had covid 12/2021. I also had Covid toes. I still have the neuropathy in my right foot only now. Toes are still numb..and swollen. I also had small reddened spots on each toe..both feet. Sometimes it gets really bad and have to remove my shoe and it gets hard to walk on the foot at times. As soon as I get home from work those shoes come off and only go on when I have to go out or work. No one has been able to help with this problem. I had a lot of pain in my right arm after I got Covid. It felt like I was touching an electric fence and getting shocks. Thank heavens that finally went away but took a long time to leave me. The only thing I do is put bandaids on the toes affected . Kitty2

my toes are still numb too, and sometimes painful, i don't get the red spots...crazy..

HI beebee...
Thanks for your reply..
I could not get any help for my feet. I have just learned to live with it. They did a biopsy on my foot for nerve problems but the nurse did not know how to do it and the procedure failed. she wanted to re-do it and I told her no. It was not very comfortable. I hope you are feeling better.
I went to several foot doctors , no help. One charged me almost $1600.00 to trim 10 ten nails. He submitted a claim to my insurance he did surgery, what a scam. I reported him to my insurance company. They had to re-bill the charge , but they still got over $300.00 plus $65.00 from me. They said if I didnt pay they were turning me over to a collection agency. It is so hard to get help with this covid stuff. PS my moms name was Bee. Sincerely, Kitty2..sending hugs to you too..

one of the things i am doing is the Miranda Esmonde White stretches...she works with the bodies connective tissue, she is amazing! she does some stuff for the feet, it has helped, she does her stretches on PBS tv stations.. it is called classical stretch, each workout is 20 min and each one works all of you in a good way, not a typical workout...i'm really glad i found out about her..main thing is to keep our body moving..feed it good stuff and build our immune system and hang in there..hugs to you too!!