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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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I had similar results. Four days with not an ounce of relief. You are right. Very expensive, especially since it is all out-of-pocket. I asked them why I didn't get ANY relief. Hemmed and hawed about neuropathy vs neuralgia. I'm still looking for someone who got significant relief. Lots of patient testimonials but I'm not totally convinced.
Have you tried any DRG implants? My doctor put in a DRG implant from Abbott. This was about 5 years ago as I got the CRPS from a bunion surgery that afterward, I changed my gate and tore the nerve that runs at the bottom of your foot. I have been taking tramadol and gabapentin. 50 mg tramadol every 2.5 hrs and 600 gaba. 3 times a day along with 300 mg gaba. I will tell you over the past 7 yrs I have had times of relief and then times when the DRG did not work. A year ago, we tried a Nalu peripheral nerve stimulator. It has been off and on with relief. I have been on the tramadol so long, I have become drug tolerant to it. We are trying to figure out how to move forward. Mayo has a Comprehensive Pain Rehabilitation Center that is 16 days and I am looking into that. I have questions first for them but alot of insurance companies cover the days you are there..but not the room and meals. You always have to have hope and alternatives.
It is something different to try. My insurance paid for it so I did not mind but I guess I can say it helps sometimes and sometimes it does not. There are 5 different programs with settings. You can use all 5 at the same time where it goes 2 minutes on each program and continues until you change it or turn it off....or you can leave it on 1 program all day. The problem is all of the variables.....which one to change....which one to leave....to turn it up or down....hmmmm
As you can see, I'm not sure I would pay out of pocket. Sorry.
Makes sense, I appreciate your honest review. Thank you! I too am not sure I want to pay over $20,000 for it to "maybe" work!