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 Support Group.

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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@dvierheller

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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Right on. My thoughts exactly- any treatment suggestions for post Covid vaccine exhaustion and nerve/ joint pain?
It’s been over a year now!🥲

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i just started gabapentent for my nerve pain. its allowing ne to sleep with no pain.

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@dvierheller

i just started gabapentent for my nerve pain. its allowing ne to sleep with no pain.

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I took that at one time to help me sleep. It caused me to sleep alright - I became an absolute zombie! I didn't even have the brain to realize what was going on. My husband finally took the med and wouldn't tell me where it was. The next time I saw my doctor and told him about it, he told me that some people have that very bad reaction to it and I must be one more.

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I have been having serious issues with long Covid and my CRPS being more active. I have been to the doctors now and all seem to think it’s no big deal. I was diagnosed with RSD in 2009 and they changed it to CRPS in 2010 because the doctor said he had to use the new term. Covid hit fairly significantly when it did. The lasting effects have been the worst. I understand why it’s called the suicide disease.

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I too suffered the same way…. I’ve learned about the imbalance of the autonomic nervous system. Was on 13 meds. For 18 months post COVID. I am currently not taking any medication and I’m coaching others to understand and restore the balance to the nervous system and heal. I am a patient at the NIH Mayo and AVIV.

I use the Whoop and method I created to use their algorithm differently.

Start Learning about the significance and importance of your HRV and other wellness practices. For more information look up #covidrecoverymama on Facebook or Instagram I’ve posted a lot of content and information through out my recovery.

I wish you well. Healing is complex and slow but healing happens.

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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 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!

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