Hi Rigman and Welcome,

I am so very sorry for all you've had to go through and the pain you're having. Many of us are survivors of medical mishaps or unexpected complications. We understand the frustration of dealing with that and how frightening a diagnosis of CRPS is.

That said. Please hold on to hope. One of the biggest names in CRPS research, Dr. Michael Stanton-Hicks of Cleveland Clinic says 80% of RSD patients improve over time.

Pain management is vital. I myself put off going until the last possible moment. I wrongly thought it would mean the end of the road. In hindsight it would've made sense to get my pain managed better while still searching for answers.

CRPS is a diagnosis of exclusion. I know you've been through the medical wringer (I went through it too) but make sure you feel 100% confident everything that can be treated HAS been treated. If there is an identifiable cause for your CRPS (sounds like a lot going on in that knee!) then treating the cause can help. In the meantime, get your pain treated and please keep using the limb gently in whatever ways you can without ramping your pain up. Many of us have accomplished that starting in a pool or doing aqua therapy. Movement and even the lightest exercises will help circulation and swelling.

If you have concerns about possible nerve injury during surgery consider seeing a peripheral nerve surgeon or a Physical Medicine and Rehabilitation doctor to explore the possibility of entrapment. It is the number one mimicker of CRPS and an important rule out. I had to go this route and found help at a large academic institution.

If everything is ruled out and treated, know there are many options for treating CRPS pain. It can take time to find what works for YOU. I can't tolerate neurontin but did well on nortriptyline. Some people like Lyrica. I've done great with ketamine and others have done great with low dose naltrexone. You have options. A good pain management doctor will help you find them. Make sure they listen and you feel comfortable with your doctor.

Watch your diet and stress level. Consider a pain therapist, they can help with mindfulness training, hypnosis and EMDR for pain coping. It does help.
Hang in there and know that we're with you and people do improve.

It's taken three years but I am running again. Still on twice yearly ketamine maintenance but that ain't nothin' compared to where I've been.

I hope you find relief and healing soon,