Hello Sibsie,

I am so sorry that you have had to join us and are having so much pain and difficulty. This is not an easy diagnosis to get and we all understand how upsetting and frightening this time can be. Know that you are not alone and that there are reasons for hope. Dr. Stanton-Hicks, a CRPS bigwig of Cleveland Clinic, says 80% of CRPS patients improve over time and I've seen that statistic other places as well.

Since you are questioning your diagnosis (I would too) know that CRPS is a diagnosis of exclusion and appropriate rule out needs to be done. One of the most important rule outs is nerve entrapment or injury. The symptoms are very similar. I am including a very informative and non dooms-day video by Dr. Pradeep Chopra in which you'll find many helpful tips about treatments and therapy. He mentions the need to rule out nerve entrapment as well. CRPSiagnosis & Management - YouTube


(I don't know why the "grin" emoticon is in the title. I didn't put it there and can't get it out but the link still works)


I have a unique ability to testify to the similarity of nerve entrapment/injury and CRPS having had both. I had a branch of my tibial nerve torn during a "minor" procedure and formed an excruciatingly painful neuroma and had the rest of the nerve entrapped. It took 9 months to find a doctor who figured it out and did a 3.5 hour nerve repair which took away massive amounts of pain. My CRPS came later from another surgery. Too many insults I suppose.

You will find information about nerve injuries here at this site for Washington University where my peripheral nerve surgeon was trained.
Center for Nerve Injury and Paralysis
Peripheral nerve surgeons are typically plastics and reconstruction surgeons who underwent a special fellowship. If you can find one they may be able to help determine if you have an injury. They use a special diagnostic test called the "scratch collapse test". It works for any peripheral nerve, mine was in the ankle. My own was positive before my operation and negative after. You'll find a video here. Utility of Scratch Collapse Test in a Case of Failed Carpal Tunnel Releases - YouTube


The other specialty that may be able to help is Physical Medicine and Rehabilitation. Some of them are trained in peripheral nerve ultrasound and can look to see if you have disruption of the nerve, entrapment or swelling that can explain your symptoms. In some cases they can "hydrodissect" scar tissue away from the nerve without surgery.

A caveat on the above doctors...much of my team is in Houston, 3 hours from me at a major medical and academic center. To get the level of care I needed, I ended up having to travel. Hopefully you won't have to do that but sometimes it is helpful if you can't find what you need closer to home.

Treating your pain while all this is going on will help decrease those pathways and help you stay more comfortable. By all means get treatment while you are getting any workup done. I don't know how any of these specialists would work with the challenges of WC but if you can see them, they may be able to give you more info about your case. Finding and treating a pain contributor can make a difference in your outcome.

On pain management, I think it most important that you feel listened to and feel that your doctor is competent. I saw three before finding the one I have now. The others just weren't a good fit for me.

Exercise is beneficial but do be careful not to work so hard at recovery that you flare things up. Your nervous system is in overdrive already. Keeping the limb moving but calm is a tenuous balance at times. Recovery can be slow and there can certainly be set backs. I had to start and re-start many times. Aqua therapy is how I got started and I can now walk a couple of miles without issue most days. It did not happen quickly but that's okay.

Hang in there and let us know how you're doing. I hope you find relief and healing soon,