Dealing with Post COVID and Complex Regional Pain Syndrome

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

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

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

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

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.

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.

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.

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!

hi Ms Young,
I was a nurse working at Seattle Children's hospital when I got covid march 2, 2020. I have multiple chronic conditions now... rheumatoid arthritis, mild pulm fibrosis, POTS, and most disabling pain. I finally saw a pain specialist who diagnosed me with CRPS. I cannot use my right hand/fingers most of the time. The pain is burning, needles, sometimes squeezing. Just awful. Additionally, I have had chest pain since 2020... always on the right side. I have been trying to get a stellate ganglion block authorized and found this discussion group. Thank you for posting this... nerve pain is so debilitating, and I feel some sense of support that CRPS has been diagnosed in many with Long Covid. And it seems that Stellate Ganglion Block has helped some people w post viral pain. Let's hope that research and clinical trials for therapeutics continue.

Same boat. Have had CRPS since 1997 developing to all 4 limbs, lumbar spine and face fairly quivkly and was managing on meds with movement well. Developed covid 19 for first time in December 2019 before it was known what it was. Lasted about 4 months then spent most of May in hospital. Adjusted meds but I then went on to get covid 7 more times, last time about 6 or 7 months ago. My partner is a nurse and kept bringing it home. The covid has hit my CNS every single time. I now have centralized sensitization and ny PCP doesn't get it. I am on fent. 50 mcg every 72. I was on 25 mcg every 48 hrs from early '98 until I got covid the first time. I think it was 4 years ago my PCP's office decided to stop treating pain patients and I had to find new one. I weaned myself to every 72 hours from 48 to make it easier to find PCP. I did and it was fine until I kept getting covid over and over again. Dr. will not go back to 48 hour dosing. Referred ne to pain clinic. Long story but have CRPS as original lumbar injury, no shots. Meds only option. PCP thinks med is causing pain. Nope, not it. Only think relieving it sometimes. Referral to second pain clinic bcuz first doesn't have a prescribing doctor. Then I find out first appointmen is with psychiatrist not neurologist. Now I'm mad. 3 times over 30 years Ive had to prove it's not in my head. Yeah, both legs are swollen and purple. I am not depressed or anxious. I am fed up. I don't have a medical degree and I can see what's happening here. If my whole chest followed me from the beginning like it should have they would have all this information. That was before it was all on computers and half my paper file is in a cellar in a drs office several towns away. None of this should be this hatd!