Dealing with Post COVID and Complex Regional Pain Syndrome

Posted by Firebender @drwhat, Oct 19, 2021

I was fully vaccinated in May with Moderna. I was diagnosed with Covid during the Delta spike in July. I was diagnosed with Reflex Sympathetic Dystrophy now called Complex Regional Pain Syndrome in 2003. I am dealing with long Covid now and possibly a flair up of CRPS. Anyone else have both? Did Covid cause your CRPS to flair? I was already having trouble finding a Dr. for the CRPS but forget about finding one who will take both seriously.

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

Hi @drwhat welcome to Mayo Clinic Connect. I see you’ve been dealing with CRPS since 2003 and now your pain and symptoms have worsened due to COVID infection and long haul COVID. You may wish to connect with fellow CRPS members in this active discussion in the Chronic Pain group:
– CRPS – anyone suffering with complex regional pain syndrome https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

There are more and more clinics and doctors specializing in post-COVID recovery across the country and around the world. Have you consulted with specialist at a Post-COVID Recovery Clinic? What other long haul COVID symptoms along with CRPS flare are you experiencing?

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I absolutely will! I have been trying to find one. I live in Jacksonville and got the initial call from Mayo a couple of days ago to possibly be treated there. They said they will send my info to the triage nurse and see from there? I have not been getting comprehensive care at all and have had to fight for what I am getting now. Symptoms wise the burning has gotten worse. My feet go from pale to purple. I randomly start sweating. I'm either freezing cold or sweaty there is no comfortable. Swelling and constant pain. Touch sensitivity has gotten worse to the point I can't step on my rug with bare feet anymore. All in the areas I already know are affected (below the knee on both legs and under my arms from the crutches). My chest now burns from inside which is new. I have a lot of swelling. I have gained about 30lbs since Covid diagnosis despite having lower caloric intake. Since Covid I've had an extremely irregular heartbeat and they did an echo and found severe Mitral Valve regurgitation and a very weak heart beat (despite being a kayaking and yoga instructor for 15 years) I can not even walk upstairs or do normal household tasks without being out of breath and having chest pain. Sleep is completely abnormal and I'm tired all the time. Breathing hurts and they have found 5 nodes on my right lung. I can't even talk on the phone without being out of breath. Brain fog is insane. So I've been struggling to advocate for myself and the Drs aren't taking me seriously. None of them are working together. I'm tired of the Drs I do see looking at me like I'm crazy when I say I didn't have these symptoms before Covid. I was treated with ketamine infusions starting in 2004 and after 2-3 years it halted progress of CRPS to the point I haven't touched narcotic pain meds in 10 years. Suddenly I find myself in more pain and new pain for the first time in a long time. They want to do a lot of invasive procedures without knowledge of CRPS and I'm scared

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@colleenyoung

Hi @drwhat welcome to Mayo Clinic Connect. I see you’ve been dealing with CRPS since 2003 and now your pain and symptoms have worsened due to COVID infection and long haul COVID. You may wish to connect with fellow CRPS members in this active discussion in the Chronic Pain group:
– CRPS – anyone suffering with complex regional pain syndrome https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

There are more and more clinics and doctors specializing in post-COVID recovery across the country and around the world. Have you consulted with specialist at a Post-COVID Recovery Clinic? What other long haul COVID symptoms along with CRPS flare are you experiencing?

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Thank you for your reply

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@drwhat

I absolutely will! I have been trying to find one. I live in Jacksonville and got the initial call from Mayo a couple of days ago to possibly be treated there. They said they will send my info to the triage nurse and see from there? I have not been getting comprehensive care at all and have had to fight for what I am getting now. Symptoms wise the burning has gotten worse. My feet go from pale to purple. I randomly start sweating. I'm either freezing cold or sweaty there is no comfortable. Swelling and constant pain. Touch sensitivity has gotten worse to the point I can't step on my rug with bare feet anymore. All in the areas I already know are affected (below the knee on both legs and under my arms from the crutches). My chest now burns from inside which is new. I have a lot of swelling. I have gained about 30lbs since Covid diagnosis despite having lower caloric intake. Since Covid I've had an extremely irregular heartbeat and they did an echo and found severe Mitral Valve regurgitation and a very weak heart beat (despite being a kayaking and yoga instructor for 15 years) I can not even walk upstairs or do normal household tasks without being out of breath and having chest pain. Sleep is completely abnormal and I'm tired all the time. Breathing hurts and they have found 5 nodes on my right lung. I can't even talk on the phone without being out of breath. Brain fog is insane. So I've been struggling to advocate for myself and the Drs aren't taking me seriously. None of them are working together. I'm tired of the Drs I do see looking at me like I'm crazy when I say I didn't have these symptoms before Covid. I was treated with ketamine infusions starting in 2004 and after 2-3 years it halted progress of CRPS to the point I haven't touched narcotic pain meds in 10 years. Suddenly I find myself in more pain and new pain for the first time in a long time. They want to do a lot of invasive procedures without knowledge of CRPS and I'm scared

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I also had a 30 pound gain in weight, I am wondering about an Endocrine component.

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I currently tested positive for covid and it seems to have activated my RSD so severely I can hardly cope with it. Has anyone else had this experience?

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Look into Central Sensitization Syndrome. I was treated at Mayo PRC pain rehab center but the pain is interchangeable for Symptoms.

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I had a crps spread from hips down in July 2020. Ended up with longhaulers but burning get some better. I got covid a month ago and spread again rom my hips to toes (previous to covid, both feet for 44 years.)

I have been in bed since without help. I have good insurance but like with long covid with my 02 around 89~92 for 2 years, I can't seem to get anyone to pay attention. Since when is it OK to just be in bed, alone, age 67 for a month and it's NBD. Feels pretty huge to me. Feels like the end of my life frankly. At some point, I need to eat more than a sandwich a day? I'm fading away. I need help, I too can't cope alone. What are you doing for help?

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I have recovered after a month or so. I am 77 and doing good now. Thank God.

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@drwhat

I absolutely will! I have been trying to find one. I live in Jacksonville and got the initial call from Mayo a couple of days ago to possibly be treated there. They said they will send my info to the triage nurse and see from there? I have not been getting comprehensive care at all and have had to fight for what I am getting now. Symptoms wise the burning has gotten worse. My feet go from pale to purple. I randomly start sweating. I'm either freezing cold or sweaty there is no comfortable. Swelling and constant pain. Touch sensitivity has gotten worse to the point I can't step on my rug with bare feet anymore. All in the areas I already know are affected (below the knee on both legs and under my arms from the crutches). My chest now burns from inside which is new. I have a lot of swelling. I have gained about 30lbs since Covid diagnosis despite having lower caloric intake. Since Covid I've had an extremely irregular heartbeat and they did an echo and found severe Mitral Valve regurgitation and a very weak heart beat (despite being a kayaking and yoga instructor for 15 years) I can not even walk upstairs or do normal household tasks without being out of breath and having chest pain. Sleep is completely abnormal and I'm tired all the time. Breathing hurts and they have found 5 nodes on my right lung. I can't even talk on the phone without being out of breath. Brain fog is insane. So I've been struggling to advocate for myself and the Drs aren't taking me seriously. None of them are working together. I'm tired of the Drs I do see looking at me like I'm crazy when I say I didn't have these symptoms before Covid. I was treated with ketamine infusions starting in 2004 and after 2-3 years it halted progress of CRPS to the point I haven't touched narcotic pain meds in 10 years. Suddenly I find myself in more pain and new pain for the first time in a long time. They want to do a lot of invasive procedures without knowledge of CRPS and I'm scared

Jump to this post

did you take the covid vaccine? it seems your problems are symptomatic to a vaccine more than to the covid itself.
i say this because fatigue and headaches are definitely covid related. the vaccine got into the core autoimmune system and it wrecks your ability to counter other issues. it seems no doctor is talking about the vaccine related issues

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I have developed frozen shoulder – adhesive capsulitis in my left arm following my second bout of long COVID. Has anyone else experienced this?

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Similar Neuropathy symptoms situation- docs even at Palo Alto clinic no help! God bless us all! Any remedies? Any ideas??

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