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?

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

@rwinney

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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I watched this again because it lays out health conditions in a practical way by categorizing things in a way I can identify with and raises considerations that seem logical in terms of addressing my chronic condition.

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@bunzman

I watched this again because it lays out health conditions in a practical way by categorizing things in a way I can identify with and raises considerations that seem logical in terms of addressing my chronic condition.

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Yes! Thanks @bunzman, I really do appreciate you following up after watching the video and more importantly I'm thrilled that you identified with and found it clear. The practical explanation is exactly what moved me when first discovering Dr. Sletten. He's a master at what he does. His in person teachings, and the way the PRC program is laid out is why I say, "awe-inspiring". How are you handling your present post-COVID journey? Have your symptoms lessoned any over the past few years?

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@rwinney

Yes! Thanks @bunzman, I really do appreciate you following up after watching the video and more importantly I'm thrilled that you identified with and found it clear. The practical explanation is exactly what moved me when first discovering Dr. Sletten. He's a master at what he does. His in person teachings, and the way the PRC program is laid out is why I say, "awe-inspiring". How are you handling your present post-COVID journey? Have your symptoms lessoned any over the past few years?

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not post covid but similar symptoms to CSS that actually started after
vaccination, but can not relate it other than chronic symptoms dealing
with itching and burning sensation, tingling. frontal headaches. The
symptoms are chronic but get worse and better and have tried to
identified right mix of drugs, activity and foods that make it worse.
oddly gets worse after eating. My thoughts are that it is not one
thing. But yes, IMO, video is strong in helping one approach what is
chronically bothering them...

-----------------------------------------From: "Mayo Clinic Connect"
To: rreading@wi.rr.com
Cc:
Sent: Saturday June 24 2023 2:14:35PM
Subject: @rwinney mentioned you in comment on Mayo Clinic Connect

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Does anyone have any other ideas on what medications might work for the severe muscle pains post covid or blood tests to have run for it? If I even try to do 2 squats, or even any go up my stairs using my leg muscles, intense burning pain, and than body starts attacking itself and shuts me down with tiredness. It is really disheartening not having doctors have certain blood tests to run for this intense muscle pain and fatigue from covid.

If anyone has any suggestions on medications that work to shut down the immune system inflammation, or the blood tests their doctor's have run to find the issues with inflammation, would appreciate it. My CK and CRP levels are fine, so that is not the issue really and must be other markers to determine the muscle pains.

Thanks again everyone for trying to help.

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@aztennisguy

Does anyone have any other ideas on what medications might work for the severe muscle pains post covid or blood tests to have run for it? If I even try to do 2 squats, or even any go up my stairs using my leg muscles, intense burning pain, and than body starts attacking itself and shuts me down with tiredness. It is really disheartening not having doctors have certain blood tests to run for this intense muscle pain and fatigue from covid.

If anyone has any suggestions on medications that work to shut down the immune system inflammation, or the blood tests their doctor's have run to find the issues with inflammation, would appreciate it. My CK and CRP levels are fine, so that is not the issue really and must be other markers to determine the muscle pains.

Thanks again everyone for trying to help.

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I’ve seen so many doctors who have ran so many tests and other than my psoriasis/psoriatic arthritis everything else comes back normal. The autoimmune disease I have causes a rise in specific inflammation markers to be elevated but that was it.
I’ve had every autoimmune test, nerve function test, mri, Ct, heart monitor, etc for all my different symptoms. Nothing accounted for the leg pain, hand numbness, stomach pains, fatigue, dizziness, forgetfulness, clumsiness, etc…. I take adderall for my Brain problems, Tizanidine for my leg cramps, tons of different vitamins hoping to help my leg pains and hand numbness, there’s nothing for my heart palpitations or stomach pains that has been offered…

I’ve seen an infectious disease Dr, neurologist, cardiologist, endocrinologist, gastroenterologist, psychiatrist, and primary dr…. None seem to do or know anything about long covid symptoms, tests or treatments. I asked for the Tizanidine and the adderall for the symptoms I was having.

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@meljocox

I’ve seen so many doctors who have ran so many tests and other than my psoriasis/psoriatic arthritis everything else comes back normal. The autoimmune disease I have causes a rise in specific inflammation markers to be elevated but that was it.
I’ve had every autoimmune test, nerve function test, mri, Ct, heart monitor, etc for all my different symptoms. Nothing accounted for the leg pain, hand numbness, stomach pains, fatigue, dizziness, forgetfulness, clumsiness, etc…. I take adderall for my Brain problems, Tizanidine for my leg cramps, tons of different vitamins hoping to help my leg pains and hand numbness, there’s nothing for my heart palpitations or stomach pains that has been offered…

I’ve seen an infectious disease Dr, neurologist, cardiologist, endocrinologist, gastroenterologist, psychiatrist, and primary dr…. None seem to do or know anything about long covid symptoms, tests or treatments. I asked for the Tizanidine and the adderall for the symptoms I was having.

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Let’s take a bet on how many Mayo doctors read the long haul Covid comments on this site.
The providers “clinics” are making a killing on long haul with no end in sight. Just keep referring and testing seems to be the modus operadi since no one knows what to do. Insurance providers are catching up with the game so verify you are covered before you are tested.
Cytokines are over expressing in us long haulers . So unless someone can address the lingering affects of cytokine activity post Covid then they are probably going to pass you on down the line. That’s basically what a long Covid clinic is...a “gathering” of specialties that examine and test and give you the results ( typically normal in long haulers).
After about 20 visits to doctors, I am proving that my own research and self treatments have helped tremendously. Approximately 30 supplements and Zyrtec and Pepcid combo to tame the cytokines. Exercise daily with or without pain. Keep trying a new neurologist until I find one that knows something. Revving up to see another rheumatologist and and immunologist....The irony is that it’s a long haul to find someone that knows anymore than what you and I know from the internet.

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@meljocox

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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Thanks for the input on your muscle issues. Would I just see rheumatologist again to rule out PMR, etc.? All my crp, ck, and sed rate is fine, so I am not sure what doctor to even go to anymore for any of this long covid muscle pain to actually get a diagnosis and some treatment. Not sure if neurologist, rheumatologist, etc? My primary care physicians look at you like a deer in headlights if you mention long covid issues. Very frustrating.

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@aztennisguy

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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Hi. My dad is experiencing the same issues as you. He had Covid quite bad last Christmas and since then his muscles in his legs burn everyday and he’s in a lot of pain and can barely walk. He’s been told he has nerve damage but they haven’t really done many tests on him or provided much treatment (we are in the UK). He’s having some more bloods done in a few days but they are struggling to know how to treat it. I believe he has an autoimmune disease and needs to see a rheumatologist. Has anything worked for you since this post? I worry about him so much, I just feel so helpless. This condition is awful I really do sympathise with you and everyone who is suffering with long Covid. Such an awful disease 🙁

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@aztennisguy

Thanks for the input on your muscle issues. Would I just see rheumatologist again to rule out PMR, etc.? All my crp, ck, and sed rate is fine, so I am not sure what doctor to even go to anymore for any of this long covid muscle pain to actually get a diagnosis and some treatment. Not sure if neurologist, rheumatologist, etc? My primary care physicians look at you like a deer in headlights if you mention long covid issues. Very frustrating.

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Im experiencing the same burning muscle pain in my legs, just walking to the fridge hurts. After being in ICU with covid i had a few months on physical therapy (pool therapy) . Nothing worked sadly. And like everyone on here my doctors just dont know. I was hoping someone might have an answer but it helps to know I'm not the only one (not that im happy others are suffering) it just helps to show my doctors there are so many out there and im not exaggerating this pain and please do more to try to get me some answers if possible!

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