Long Covid burning sensation inside their muscles?

Posted by meljocox @meljocox, Jun 7, 2023

I get a burning sensation in my thighs and hip muscles that feels like I just ran a mile and my legs are about to give out, but it happens with no physical activity. I can just walk then get a wave of it. Rarely have I gotten it sitting and never layjng down. Usually after I stand up and walk. It’s a lesser scale than when I actually do physical activity which is greatly magnified with any repetitious activity like walking a flight of stairs. I used to walk flights of stairs because it was “healthy” now I can only walk up one flight of stairs before my muscles lock up and burn like crazy. Anyone found relief for this?

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Compression. Calf or leg sleeve. I have this sensation with POTS unless I'm wearing leg compression.

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I am having the same issue, and no clue even what doctor to ask about this. I had covid pretty bad in 2021, seem to get a little better no huge muscle issues, than either got another variant of covid in 2023, and now my muscles hurt so much doing nothing at all. Prior, it was not anywhere like this. 2 leg squats and I can barely walk for a few days with super tight burning thighs. If anyone can actually come up with any blood tests, or doctor's who might know what to look for, please post about it. Right now almost all of my doctor's are clueless as my CK and CRP levels are fine. Has to be some other tests to figure out why the intense muscle pain just as the original person posted.

A lot of money pumped into covid research, but I have yet to find any clinic that actually knows anythiing about how to treat long covid. Even in Arizona, Banner Health says they have long covid clinic, and when I went, the doctor said to me he has no clue why my muscles hurt from covid, and to just keep trying to get better. Hope everyone can ban together to try to get some actual money pulled into clinics that can help long haulers, etc.

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I’ve seen a neurologist who did MRI’s and nerve function tests. Normal except some herniated discs in my neck and lower back that “can’t be the cause for my symptoms maybe you should see a physical therapist”.
I’ve seen cardiologists for heart palpitations but the two types that I have simultaneously (ventricular ectopy and paraventricular ectopy) are inconsistent enough to not need treatment.
I’ve seen endocrinologist for thyroid inflammation but it’s not bad enough to treat, “let’s watch it”.
Gastroenterologist for the severe lower stomach/abdominal pains. Colonoscopy and all bloodwork came back normal, three types of medication haven’t helped. Still have to get a CT done “just to make sure we aren’t missing anything”.
All my labs testing for other autoimmune diseases, I say other because I have psoriasis and psoriatic arthritis, but all other tests come back normal so no other illnesses could be causing my symptoms…

But I never heard anything from others about the muscle burning. I have the post exertion malaise for sure but I had not heard about that until just recently and still no findings for treatment or help.

I do take Tizanidine for leg/foot cramps I get…. Works wonders for that but not the burning or muscle twitching I get.

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@meljocox

I’ve seen a neurologist who did MRI’s and nerve function tests. Normal except some herniated discs in my neck and lower back that “can’t be the cause for my symptoms maybe you should see a physical therapist”.
I’ve seen cardiologists for heart palpitations but the two types that I have simultaneously (ventricular ectopy and paraventricular ectopy) are inconsistent enough to not need treatment.
I’ve seen endocrinologist for thyroid inflammation but it’s not bad enough to treat, “let’s watch it”.
Gastroenterologist for the severe lower stomach/abdominal pains. Colonoscopy and all bloodwork came back normal, three types of medication haven’t helped. Still have to get a CT done “just to make sure we aren’t missing anything”.
All my labs testing for other autoimmune diseases, I say other because I have psoriasis and psoriatic arthritis, but all other tests come back normal so no other illnesses could be causing my symptoms…

But I never heard anything from others about the muscle burning. I have the post exertion malaise for sure but I had not heard about that until just recently and still no findings for treatment or help.

I do take Tizanidine for leg/foot cramps I get…. Works wonders for that but not the burning or muscle twitching I get.

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Well let's hope all the money pumped into the research starts to find out why the body if fighting itself in covid. It mainly is an autoimmune condition I believe as I have never had any issues with muscles, muscle burning, brain fog, etc. My first covid experience was not great, but the 2nd one seemed to turn some muscle issues on some how, yet my CRP, CK levels look ok. The muscles burn for no reason, and has now kept me off of any exercise basically. It is insane that the docs maybe cannot associate this covid with other type of mast cell activation syndrome stuff, etc. It is the body just turning on the immune system. My rheumatologist wants me to try hydroxychloriquin, but not sure if you or anyone else has tried similar stuff for the muscle pains. I also have read some posts about low dose naltrexone, etc. Maybe some other medications might help as well but i do not want to be a guinea pig as need to get to root cause of the immune system disregulation. I was going to look at the Dr. Bruce Patterson long hauler blood tests, etc. to see, and than they have a protocol to try.

If you find any other posts or medications that could help with muscle pain issues, etc. let me know. Keep trying to fight on. I am not even sure what diet to follow any more as I already ate health.

Best of luck with everything, and hope we can find some definitive answers for those of us that have pretty normal blood work, yet all these symptoms.

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@aztennisguy - you are absolutely correct, it's an immune system nightmare virus. That's why so many people, like us unfortunate folks end up with strange and awful symptoms; yet, there are folks who got Covid and did fine. My guess is we have some virus prior in our system, like chicken pox that turns into shingles.

Out of curiosity, were you vaccinated? I was not. Sadly my Doc wouldn't''t help me when I got Covid and give me any medication or order the monocolonal antibodies. How about you? Were you put on meds?

I am having terrible symptoms pop up, i.e., a chalazion on lower lid and also blepharis which is basically like dandruff on your lashes and creates dry eyes and pain. I NEVER had problems with my eyes! The chalazion became inflamed and infected, had to have numerous biopsies to rule out cancer and 2 surgeries - and guess what, the chalazion and pus came back. This beast of a virus that lives within us will not allow our bodies to heal and it's taken over!

I also want to try the hydroxychloriquin.

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@summerof42

@aztennisguy - you are absolutely correct, it's an immune system nightmare virus. That's why so many people, like us unfortunate folks end up with strange and awful symptoms; yet, there are folks who got Covid and did fine. My guess is we have some virus prior in our system, like chicken pox that turns into shingles.

Out of curiosity, were you vaccinated? I was not. Sadly my Doc wouldn't''t help me when I got Covid and give me any medication or order the monocolonal antibodies. How about you? Were you put on meds?

I am having terrible symptoms pop up, i.e., a chalazion on lower lid and also blepharis which is basically like dandruff on your lashes and creates dry eyes and pain. I NEVER had problems with my eyes! The chalazion became inflamed and infected, had to have numerous biopsies to rule out cancer and 2 surgeries - and guess what, the chalazion and pus came back. This beast of a virus that lives within us will not allow our bodies to heal and it's taken over!

I also want to try the hydroxychloriquin.

Jump to this post

Well like you said, covid hit some people with just the sniffles, and others got hit bad. Assumption is personal genetics. If the genetics cannot handle a virus like Covid, it will turn on receptor cells that will turn on maybe some predisposed genetic immune issue we might have been prone to get maybe years way down the road. My EBV values are off the chart my doctor said after I got Covid. I played competitive tennis and taught some elite junior tennis players right before covid, and nowadays can barely walk up stairs some days with insane muscle pains as if I did 100 squats or 100 pushups. Frustrated is not the word because my blood work is ok as far as CK, CRP., etc. so doctor's look at you like a deer in headlights, yet I tell them maybe they should run some tests like Dr. Bruce Patterson has run with are immune marker tests, etc. to see if an antibody tests look off. I am just getting into the mayo covid clinic now, and hope they will run similar tests as I think I already know the tests that need to be done to try to see if certain Imterleukin values look off. If they are, than can see if it matches those type of markers seen in other autoimmune diseases, than they can treat things better.

Everyone is frustrated with post covid care, etc.. It is so knew, even some of the smartest doctor's are unsure why the symptoms in perfectly healthy people. It now gives me an apprecaiation to those that have autoimmune issues all their life. I took life and tennis for granted, now I know I need to just work on finding answers for myself, and hopefully others. I am a guinea pig basically, and have had almost every blood test done under the sun. The remnants of the virus stay in your cells, and if you stress yuourself out, or upset your body in any way, basically covid comes back to life with the remnants in your cells, and causes immune system more issues.

I will keep you, and others on the forum up to date if I see anything working for me as far as possible medications, etc. I usually go the natural route, but I have tried the natural supplements and they made me worse actually. I do not recommend taking all kinds of supplements as they can upset your GI tract, etc. Stick to whole foods, etc. and see what triggers the body with symptoms.

Keep yourself healthy! Try to stay positive because right now covid is all about self care because it will be 10 years before they really know why some of us healthy people are suffering from crazy symptoms. It is 100% an autoimmune reaction in the body, and that is what the need to target to safely calm the system without steroids. If they find that option, at least many symptoms will get lowered. I don't think it will be possibly to reverse any of the covid cell damage though unless they decide to offer long haulers special IGG or autoimmune antibody infusions etc. to help the T Cells, etc. in the body.

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Excruciating muscle pain is one of the constellation of issues when I have a "crash" episode. I have overwhelmingly, incapacitating, leaden exhaustion, usually the day AFTER I have overextended myself with either physical activity or heavy & concentrated brain work. Along with the pain in my arms & legs I have muscle weakness, nausea, no appetite, severe headache, sensitivity to light & sound, mental confusion-full sentences take a lot of effort. I can wake up like this or it will creep up in the morning. I am flat in bed with curtains drawn all day. LOTS of water helps, 10-12 cups, electrolyte replacement (Gatorade, Propel, Liquid IV), NSAIDS (ibuprofen/naproxen), I take Benadryl 12.5-25mg. Generally, by 4-5pm I can at least get up and walk around at home, eat something simple like oatmeal, plain noodles, chicken broth and turn on some mindless tv. I am VERY cautious the next day with my physical and mental activities- I am more prone to a repeat episode if I go out there and make up for all I missed when I felt ill; then its a vicious cycle. 2 1/2 years of this and I know how the cycle goes. The only "cure" is prevention- moderation, pacing and prioritizing my physical and cognitive activities every day.

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Hello all, I'm so sorry you are dealing with chronic situations from COVID. Occasionally I pop in to a conversation about COVID long-haul to share Dr. Christopher Sletten's video on central sensitization syndrome (CSS). He works in Mayo's Florida Pain Rehabilitation Center (PRC). You may be interested in the following conversation about the program and others experiences -

Mayo Clinic Pain Rehab Center - What's your experience? -
https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/?pg=4

Dr. Sletten runs a 3 week program, which all 3 Mayo locations offer, for chronic pain patients. I attended because I have CSS and found his rehab program to be awe-inspiring, it really has turned my life around. CSS is mostly what occurs in post-COVID and long-hauler cases. Living with the central nervous system in an uproar and weathering the storm may take time, patience and a plan.

Here's Dr. Sletten's video - it may help some folks understand what's going on their bodies and offer new thoughts or approaches, regardless of whether or not you are able to attend the PRC or not:

Dr. Christopher Sletten- Central Sensitization Syndrome -

Please let me know if you are interested in learning more about the PRC program or Dr. Sletten's teachings. I hope the video helps with clarity and you are able to be inspired. I'm rooting for you and am happy to help in any way I can. After watching the video, will you let me know your thoughts? Did any parts of the video resonate with you? How so?

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@summerof42

@aztennisguy - you are absolutely correct, it's an immune system nightmare virus. That's why so many people, like us unfortunate folks end up with strange and awful symptoms; yet, there are folks who got Covid and did fine. My guess is we have some virus prior in our system, like chicken pox that turns into shingles.

Out of curiosity, were you vaccinated? I was not. Sadly my Doc wouldn't''t help me when I got Covid and give me any medication or order the monocolonal antibodies. How about you? Were you put on meds?

I am having terrible symptoms pop up, i.e., a chalazion on lower lid and also blepharis which is basically like dandruff on your lashes and creates dry eyes and pain. I NEVER had problems with my eyes! The chalazion became inflamed and infected, had to have numerous biopsies to rule out cancer and 2 surgeries - and guess what, the chalazion and pus came back. This beast of a virus that lives within us will not allow our bodies to heal and it's taken over!

I also want to try the hydroxychloriquin.

Jump to this post

I never got vaccinated. No one put me on meds when I had Covid, it was in 2020 before anyone knew anything and all doctors were arguing about what was the right course of action so I suffered at home alone with vitamins and home remedies.
All docs now refuse to treat anything except my muscle cramps that Tizanidine helps with. But nothing else so far and I suggested that when nothing else worked because my friend with MS suggested it and it’s been the only relief.

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@aztennisguy

I am having the same issue, and no clue even what doctor to ask about this. I had covid pretty bad in 2021, seem to get a little better no huge muscle issues, than either got another variant of covid in 2023, and now my muscles hurt so much doing nothing at all. Prior, it was not anywhere like this. 2 leg squats and I can barely walk for a few days with super tight burning thighs. If anyone can actually come up with any blood tests, or doctor's who might know what to look for, please post about it. Right now almost all of my doctor's are clueless as my CK and CRP levels are fine. Has to be some other tests to figure out why the intense muscle pain just as the original person posted.

A lot of money pumped into covid research, but I have yet to find any clinic that actually knows anythiing about how to treat long covid. Even in Arizona, Banner Health says they have long covid clinic, and when I went, the doctor said to me he has no clue why my muscles hurt from covid, and to just keep trying to get better. Hope everyone can ban together to try to get some actual money pulled into clinics that can help long haulers, etc.

Jump to this post

I was diagnosed with PMR. I had severe burning pain in my biceps which were swollen. Also had stabbing pains in lower back and hips after walking. Prednisone helped right away…and am slowly tapering off. Hope you find relief. I had week long reactions after the three vaccines I received and this pain and fatigue started after I actually caught covid.

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