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Complex Regional Pain Syndrome

Posted by tiacanfield @tiacanfield, Mar 24 4:44pm

I have just been diagnosed with CRPS after a contusion to my heel bone that happened December 8, 2024. Since then I’ve seen numerous specialist. Running test after test on me. Sending me to physical therapy. Latest test was today, vascular Doppler, which came back normal. My foot at first was red, warm to touch and very swollen. After 8 days of that, December 16th, I noticed my foot was ice cold, burning, and almost had a purple/blue tint to it. Ever since then it’s become increasingly worse. The pain in my foot as now moved to my thigh. I forgot to mention I also have a 1.3cm hip labral tear with this contusion to my heel bone. I’m new to all of this. I don’t have many family members alive, the ones I do have don’t believe me. It’s exhausting. Oh, also, sorry I’m everywhere. I broke my wrist in 6th grade and had to have it desensitized and when I told the doctor this, his response was “hmm that’s so odd” so, what helps with the flares? Im on Gabapentin 900mg x3 daily and that’s not seeming to help anymore. I’m scheduled with pain management April 20 something. I’m needing support and encouragement. This is such a painstaking process to go through. The pain just keeps getting worse and my foot is ice cold most of the time.

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joelhoward1092 | @joelhoward1092 | Jul 4 10:05am
In reply to @bburch1954 "Is any of their treatment covered by insurance? I am going to the 16 day Mayo..." + (show)
Profile picture for bburch1954 @bburch1954

Is any of their treatment covered by insurance? I am going to the 16 day Mayo Pain Clinic and insurance covers it. It is nice to have a backup plan though.

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It is not covered by insurance unfortunately. There are components of the treatment (chiropractic, certain types of PT, etc) that may be covered by your insurance, but you have to file it yourself. The program has great success rates for CRPS, but it can be very expensive.

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catukf | @catukf | Jul 5 1:15pm
In reply to @geronimo87 "I am so happy for you! What a huge relief to know that your pain will..." + (show)
Profile picture for geronimo87 @geronimo87

I am so happy for you! What a huge relief to know that your pain will subside and that you do not have CRPS. I couldn't agree with you more about trusting your own experience and intuition and getting a second opinion. I got 3 more opinions after seeing the first MD and had 2 additional surgeries, and it made all the difference!

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Honestly I can't tell you how relieved I am. After doing extensive research I would urge everyone thats currently diagnosed with CRPS to get a second opinion asap!

60% of CRPS patients are misdiagnosed!

Thank you for helping me . x

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highlands1946 | @highlands1946 | Jul 8 3:45pm
In reply to @grannyzoo "It's crucial to eliminate all sugar from your diet immediately, as it can contribute to inflammation...." + (show)
Profile picture for grannyzoo @grannyzoo

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.

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This is a fantastic reply! thank you!

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karel | @karel | Aug 17 7:23am

You might try aloe vera gel for the burning pain. Also magnesium 100mg. tablets, but chelated one so it does not hurt the stomach. Solgar chelated magnesium 100 tablets. Ask your md if you can take at least 3 a day. I had shingles for 6 years on my buttocks which left me with crps. I tried it all,
Also terrasil shingles skincare ointment. It is homeopathic, it is around $30 a small tube but you can get it for less on ebay. It also helped me tremendously, I was sitting on ice for 6 years, but it soothed it, but 10 minutes later came back woth a vengenance. So now I put hourly on the aloe vera gel, and swithc off to the terrasil, and the magnesium.They think now it has spread to my spine so you cant sit, lay , stand, a freaking nightmare. But I stood 8 years with very minimal burning until now. It seems any injury to a bone , joint ,muscle, ligament can trigger this off. Also a lot vitamin C. to boost the immune system.I pray for a speedy recovery. You are not alone.Karel

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