Complex Regional Pain Syndrome

I am also newly diagnosed with CRPS it took 4 years to diagnose.
Mine is from cancer treatment. Had 2 surgeries and radiation during 2nd surgery before skin graft and then another 6 1/2 weeks of radiation. Mine goes from below knee to my toes. Mine is also ice cold. No pain pills have helped.

It's crucial to eliminate all sugar from your diet immediately, as it can contribute to inflammation. Be prepared for potential withdrawal headaches, but stay focused on your goal. Additionally, reduce your intake of red meats. Staying active is essential, even if it feels uncomfortable. You can find a wealth of information on Complex Regional Pain Syndrome (CRPS) by exploring YouTube, which covers dietary recommendations and vitamins and many other questions.

I recommend seeking care at a teaching hospital for specialized treatment. It's important to choose a pain specialist who takes the time to understand your unique situation rather than treating you like just another patient. Look for someone knowledgeable about CRPS to provide the best support.

I am in North Carolina and used UNC, where I found an excellent pain management specialist near Charlotte. Make sure to find a neurologist who understands this disease. Contact the Mayo Clinic for suggestions on medical care. I also used a Nurse On Call type service in Jacksonville, FL. The sooner you seek treatment, the better your chances of improvement. Start therapy as soon as possible. Get into water Aerobics.

Personally, Gabapentin didn’t work well for me. You must become your own advocate since so little is known about this disease. Good luck, and don’t hesitate—start everything now.

Check out thesperoclinic.com.

This clinic is quite the commitment, but they specialize in CRPS. Although I do not have CRPS I went to the clinic for other reasons. It is quite expensive, but I saw miracles worked on people with CRPS.

You can direct message me if you have questions.

I have not been diagnosed with CRPS, but have many similar symptoms. EMG last July said it's peripheral neuropathy. I was fairly active, but had daily pain of 6-7. As of about five months ago, I began developing burning, tingling, itching in feet, legs and arms. I am beginning Scrambler therapy in New Jersey. My first session did not produce any significant relief. I am only slightly optimistic that continued sessions will be more helpful. If not, I will chalk it up to another failure along with SCS, pain pump, PT, meds, and whatever other stuff I may have forgotten, I'll keep you updated.

What has been done for your actual injuries, like the tear. Did your injuries heal, did they ck for injuries to the soft tissues?

Day two medical update on Scrambler therapy. Still no real pain relief. Today will be sort of the true indicator as to whether this therapy will actually work. I am thinking that we will be heading home at the end of the week, No more therapy. I was told that I was a good candidate for Scrambler, but it looks like this will be another failed therapy. I'll be back tomorrow with an update.

Hello to all that posted
I can help a little with complex regional pain syndrome, sorry to hear you all have it in Uk it’s also known as an invisible illness/ disability.
I was diagnosed in my twenties but only later in life was it more understood.
After a fracture ankle and non weight bearing my limb swelled up and I was gaurding it , after bone scans etc I was immediately diagnosed I was put on 10 mg start amitrephline ( spelling) by pain management and intense physio

I am chronic cold version
I find staying as active as you can helps ( without over doing it)
As others have said pain management anethatist and specialist physo.

Sometimes it hurts to be hugged, the wind on my face sometimes hurts.
I have other spinal stuff wrong with me.

Other things that help me.
Change of temp sets me off I have to keep heating certain temp.

I found some relief with amertrpine in past but gabapentin is seen as better drug less side effects.
I feel sorry for the poster that said not much relief from gabapentin.

My way of describing it is - your body thinks it’s being attacked by something and it over reacts. The sympathic nervous system miss fires.
I get the blue foot thing a warm bath helps me as well
From what I’ve heard is they like to get pain first under control and then therapy physio etc. also mirroring the limb and desensitising it.

Unfortunately it can spread to another limb
It’s a horrible thing to deal with but staying active is paramount
There used to be two types
1 due to nerve damage and one without.

I had chilli high dose pads Quentin something the treatment burns but for me I had good relief it’s a high dose of capsin from chilli’s a natural pain relief administered by pain management.

Apart from above I can empathise with all your pain it’s an awful thing to deal with and one of the most pain diseases
Keep trying to get the right drugs for yourselves to combat the pain, pain management will try different drugs until best one found for each individual with the less side effects.

Sorry to hear you are going through this
Pain management will be more understanding as they know how invisible and pain full your condition is.
I’ve got good feeling for you for 20th April.
Yes some people don’t understand the disease or pain and it’s frustrating to explain. Some docters aren’t familiar with the condition but pain management will be brilliant for you and you will feel understood and a sense of relief
Be nice to hear how you get on

Day three Scrambler therapy update. Yesterday's treatment targeted my right leg/foot. Unfortunately, no improvement noted. Today will likely be my last day, unless they try targeting a different region, and that gives some relief. If not we will be heading home with me in the same condition as I arrived with. I'll update you all tomorrow. Good health and less pain to you all.

I was diagnosed with CRPS in 2000. I broke my ankle and the inflammation caused by the cast caused damage to the nerves surrounding the ankle. While undergoing treatment for the fracture and after the cast removal, I fell and broke my foot on the same side and was finally diagnosed after 8 months of excruciating pain with CRPS. I was sent to pain management and had an epidural injection to calm the pain. Slowly over time, after multiple med trials, we found some meds that helped me. One thing that helped the most was moving my leg and foot as much as possible and keeping it warm. I never wear dresses and all of my pants have linings. I still get epidural injections that give me pain relief. Mist importantly, it’s awful in the beginning. I never thought I could continue to work, finish my degree and own a home. My life is not normal. I actually just retired 25 years with the disease. It it is hard with the burning and loss of motion, but the alternative is much worse. If the first doctor you see doesn’t help, find another.