Covid Legs and Toes

Posted by X @jesmorales, May 4, 2023

Hi Everyone,

Long hauler since November 2020, I am still experiencing pain and weakness in my legs along with my toes turning purple or red. Sometimes my toes will feel hot. My doctor said to stretch and this is not helping. Anyone have any tips or experiencing the same thing? I’m ready for this long Covid to be done I have other symptoms but figured I would start with this.

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

@gsgambhir

May I know which specialist diagnosed you with erythromelalgia and Raynaud's?
My wife has calf pain in both legs since 7 months post Covid. Been to all specialists and also did rounds of Peptide and ozone and IV. Last couple of months she has burning in legs feet and toes. Just started seeing discoloration of toes turning bluish, purplish. Just starting LDN now. She was prescribed Gabapentin for burning which she started taking a week ago.

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Please let us know if the Gabapentin and LDN helps with your wife's symptoms. I was offered Gabapentin as well but I have a fear of most medications and so I'm afraid to take it. I know it helps some but doesnt help others. I'm still hopeful the LDN will eventually help me through this if I give it enough time. I also STRONGLY believe this is a nervous system issue, the nerves were damaged by the virus and/or an immune response to it. Either way, the nerves have to either be healed or retrained. Nerves take a long time to heal, so patience may be what's in order for us all.

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@jennyrice

Interestingly, my mom has been experiencing something like what you're describing since COVID as well, she gets a badly swollen calf and ankle with angry red blistering rash. She is prescribed prednisone cream which seems to work for her, but it doesn't keep in from flaring up again some other time, perhaps when her immune system is run down. Doctor says it's from COVID and they see it all the time now. It's different from the EM I experience in that it is an obvious rash, but it's similar in that there is a lot of pain and heat. So strange! There needs to be more support for all these weird symptoms of Long Covid.

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WOW! I am so sorry for your mom and so grateful you saw my post and posted. It's interesting to read that the doctor/s you and she see are saying they see it all the time. I can get NO ONE to acknowledge it. My PCP contradicted the podiatrist and derm. who said NOT to use cortisone dailly. I have to understand why. If I don't,the bottoms of my heels blister and crack and are even more painful.

Maybe we all should take photos and send to the Surgeon General!

Thank you, @jennyrice for posting.

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@jeindc

WOW! I am so sorry for your mom and so grateful you saw my post and posted. It's interesting to read that the doctor/s you and she see are saying they see it all the time. I can get NO ONE to acknowledge it. My PCP contradicted the podiatrist and derm. who said NOT to use cortisone dailly. I have to understand why. If I don't,the bottoms of my heels blister and crack and are even more painful.

Maybe we all should take photos and send to the Surgeon General!

Thank you, @jennyrice for posting.

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That's really not a bad idea, I think more doctors need to be aware. They say EM is rare, like 1 out of 100,000 people, but I think it's MUCH more common now after COVID and some people have it after getting the COVID vaccine as well, it's actually listed as a known side effect of the Moderna vaccine in particular. They need to update their stats and seek funding for researching treatments. It's rediculous that doctors know so little about it. I get shrugs and blank stares.

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@jennyrice

Please let us know if the Gabapentin and LDN helps with your wife's symptoms. I was offered Gabapentin as well but I have a fear of most medications and so I'm afraid to take it. I know it helps some but doesnt help others. I'm still hopeful the LDN will eventually help me through this if I give it enough time. I also STRONGLY believe this is a nervous system issue, the nerves were damaged by the virus and/or an immune response to it. Either way, the nerves have to either be healed or retrained. Nerves take a long time to heal, so patience may be what's in order for us all.

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Absolutely will do. She is on 1.5mg LDN now and plan to titrate up to 4.5mg. Gabapentin 300mg. Just 2 weeks in as of May 2024.

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@gsgambhir

Absolutely will do. She is on 1.5mg LDN now and plan to titrate up to 4.5mg. Gabapentin 300mg. Just 2 weeks in as of May 2024.

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I also want to mention thst my wife has found a lot of support on reddit. She is on reddit and I am here reaearching 😀. Reddit has a longhaul group as well with 60K members...and you can message them directly, in case youbfind someone with similar symptoms. Just in case anyone is looking for additional support.

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Hello. I'm not sure if mine is Post Covid symptoms or arthritis or fibromyalgia or peripheral artery disease. I have achy legs that get very painful if I try to walk any kind of distance... and I've been a daily walker and hiker my whole life. T
Had an x-ray of hips and I have osteoarthritis of my hips... but not sure if that is causing all the pain or not. Had a steroid injection and it helped the hip but not the painful achy legs. Tried Meloxicam and it didn't work. Was taking regular Ibuprofen 3 times a day along with arthritis strength Tylenol (650mg) 3 times a day. Helps but not enough. So now I just started Diclofenac... and praying it works. I've been doing alot of research myself and if this medication doesn't work, I'm thinking that I may have Peripheral Artery Disease.....Google the symptoms of that and it sounds just like me. Legs don't ache when they aren't being used....except at night sometimes in bed. And the medication for that is a totally different type of medication. The Diclofenac is a strong NSAID. I get an MRI in June....so hopefully that will give me some answers. Good luck to you. It sucks big time when you're used to being active and can't be without alot of pain.

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I have a problem with my feet. When I go to bed it’s hard for me to fall asleep because the bottom of my feet feel so hot!!!
Anyone else having this problem?

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Hi,
I’m post covid since December 2020 (1st time writing anything) and I have the same things with my feet and toes. I have a lot of trouble sleeping. The sharp pains in my feet and toes gets much worse at night and will wake me up if I am asleep. Stretching does not help me either. My doctor tried giving me gabbapentin and I think it has helped some. I am having fewer leg cramps at night with the gabbapentin.

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@fionad

Hi,
I’m post covid since December 2020 (1st time writing anything) and I have the same things with my feet and toes. I have a lot of trouble sleeping. The sharp pains in my feet and toes gets much worse at night and will wake me up if I am asleep. Stretching does not help me either. My doctor tried giving me gabbapentin and I think it has helped some. I am having fewer leg cramps at night with the gabbapentin.

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Me too..I have had this problem since my first bout of covid in 2021. I have been to numerous doctors and no one knows what this is or what to do about it..at least now only 2 toes are the most affected..back when I first got covid it was all ten toes and both feet. The pain was bad and sometimes the only relief was to take my shoes off. I put bandaids on them and now put toe foam bandages on them..helps a little bit and wear accommodators arch supports in my shoes. It does limit how much I walk and when, but thanks to dear covid , I have many other health problems that also limit my activity. Sincerely, Kitty2

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@rose5

I have a problem with my feet. When I go to bed it’s hard for me to fall asleep because the bottom of my feet feel so hot!!!
Anyone else having this problem?

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My feet, since being "+" in March 2023, have begun peeling on the bottoms of my heels, and are often hot and burning - not just at night but more often night and early morning. Again, one of the many odd symptoms experienced and one wonders who is collecting the list and adding to it.

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