I hope by now you have found relief and are in remission. CRPS is a pernicious disease. I have had it for over 20 years. My mother and brother were diagnosed with it. One of my daughters has it.
In my experience— learning the hard way due to a much delayed diagnosis the first time and then delay in treatment as well, one of the most important things you can do is to start desensitizing therapy right away.
I learned several strategies from a physical therapist familiar with CRPS. They said the worst thing is to not touch your affected limb. It’s so painful to touch that we tend not to do it.
even despite medical treatment, including injections.
While I have found injections to be the most effective for me, if not done in a timely manner I have found them to be less or not effective.
What I learned from my first experience with CRPS was that using methods like alternating warm and cold water foot baths / compresses, light touch with a sensory brush/sponge, soft fabric / slightly different fabric and so on helped manage CRPS pain and to delimit it’s spread.

Every person who has CRPS may have different levels of pain. But with professional guidance we all can learn what we are capable of doing for ourselves in addition ti treatment.

I had not been told with my first event that CRPS is a lifelong disease. That you can put it in remission but it might return with your next injury or surgery.

I have it now and have had several periods in which it’s been active since about 1999.

I cannot give medical advice, and please do not view my suggestions that way.

I can say that it is critical to read legitimate sources on CRPS and learn from physical therapists who know CRPS and physicians who specialize in treating it to expand your capacity to care for yourself.

Cleveland clinic just got a federal grant to explore stem cell treatment for CRPS. That would be an amazing opportunity to help people whose CRPS refuses to respond to traditional treatment.

My daughter who has it has been suffering more than 6 years without remission. She now has only one functional limb and relies on an electric wheelchair to get around.

Her pain is relentless. She has used desensitizing strategies to move the upper reaches of CRPS on her legs downward. She has been able to keep one leg from getting as bad as the one originally injured.

But delays in treatment (over a year) really harmed her chances of remission. It’s a constant struggle. Her life has been forever changed for the worse.

I hope anyone with CRPS reads all they can and learns with their treatment team about the mechanisms of CRPS, including inflammation, and the variety of symptoms and systemic impacts CRPS could have if not treated, so they can get on top of it and put it into remission as soon as possible.

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