← Return to Dealing with Post COVID and Complex Regional Pain Syndrome

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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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Replies to "I absolutely will! I have been trying to find one. I live in Jacksonville and got..."

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

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

I have doctors look at me like I've lost my last marble too! It's upsetting to say the least. They have told me this is all in my head more than once. My argument is that if it's in my head why is MOST of the pain in my darn legs! There was a time I really respected and looked up to doctors that has changed drastically in recent times. When they don't have an answer they put it off on the patient. That needs to stop. I've had a couple of medical professionals honestly tell me they didn't know what was going on or how to help me. I respect those folks who try and give honesty instead of self-sparing egotistical lies. I'm just learning that there are others out there dealing with my same issues. So is it that we are all in my head? Or maybe there has been validity to my claims all along!