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Complex Regional Pain Syndrome
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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Ask your pain doctor about trying low dose naltrexone for your pain. You can read about conditions it helps at http://www.ldnresearchtrust.org
Hi Catukf,
I was ultimately diagnosed with CRPS, but I think the diagnosis will soon no longer apply since my most recent surgeon seems to have identified the underlying causes and operated to resolve them. I do believe that this diagnosis is often given out often when MDs can't identify the underlying cause(s) and without sufficient investigation.
I feel so much better now. My pain is 95% gone and I am gradually regaining my range of motion with the support of a really talented OT.
I will message you in case you'd like to chat further:)
UPDATE Ulnar pain and CRPS Diagnosis:
I had 2 xrays and my a consultant orthopaedic surgeon ( Dr Sultan Qasim) He assured me that my ulnar bone was fine. The pain I felt was because i had early onset CRPS. Last week I received a second opinion from one of the best hand and wrist surgeon is in the north-east. I'm shocked at the result. He told me I didn't need any further diagnostic tests because he could quite clearly see what was causing the pain. A broken ulnar bone! I'd completely broke the tip from the bone. I could see the separation between the bones on the xray. He also ran some tests for CRPS and confirmed that I had no signs of the condition. My pain, he explained, was the result of having two broken bones.
I'm relieved , but also really angry. For three weeks, I’ve been living with the fear that I had an incurable, progressive disease to the point where I wondered at times if it worth going on. Not only that, I was led to believe there was nothing wrong with my ulnar bone and the pain was being created by my central nervous system. It’s deeply concerning to think how many people he may have already dismissed and wrongly diagnosed with this condition , and even more disturbing to consider how many others could suffer the same fate if he's allowed to continue practicing unchecked. I will be filling a formal complaint to the GMC later today against this consultant.
The moral of the story is: If you're unsure after receiving a life-altering diagnosis and something doesn’t feel right — get a second opinion. It could completely change your life.
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1 ReactionHi Geronimo. I am so, so pleased to hear your news! Our situations are more alike than I thought. Please see my "Update" comment below. And after doing extensive research, it seems that 60% of patients are missed-diagnosed with CRPS. I feel it's important to get the word out.
Best wishes!
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1 ReactionThe most effective therapy for CRPS by far is Calmare Scramber Therapy. Please see this article: https://www.paintreatmentdirectory.com/posts/calmare-scrambler-therapy-is-an-effective-therapy-for-complex-regional-pain-syndrome-crps. Also, addressing past trauma is also very helpful. See this article: https://www.paintreatmentdirectory.com/posts/chronic-pain-due-to-trauma-and-how-to-heal-it
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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1 ReactionI suppose that Scrambler Therapy works for some, just not me. Fourteen hundred dollars later plus hotel, meals gas, frustration, and I have nothing to show for it. I truly hope that others fins relief with this treatment.
Can you tell me what "Spero" is? I've never heard of this or if it is a place, where is it?
Thanks!
Hello, Spero is a clinic located in Fayetteville, AR. They specialize in treating CRPS (drug free), but have found their methods to be successful in treating other chronic conditions like Fibromyalgia, EDS, Chronic Fatigue, POTS, Long Covid and many others. Feel free to contact me directly or just go to the website. http://Www.thesperoclinic.com. They offer free phone and/or Zoom consultations. It is not an inpatient clinic, but you do go 4 days a week.
Let me know if I can help you.
Joel
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.