Dealing with Post COVID and Complex Regional Pain Syndrome

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?

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

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