I have been reading posts for a while, but too shy to jump in, so here goes! I was diagnosed with CRPS last December after a right foot sprain in October. I haven’t had any luck with treatments, and the CRPS is in both feet now but it is worse in the right foot. I walk with crutches or sometimes a cane. I have burning up to the ankle in my right foot, but most of the pain is localized to the soles, especially in the heels and arches. My right arch (near the heel) can be excruciating and feels like nails being driven in. I have color change in my soles, they can both be red, purplish, or mottled red and white. My feet look totally normal from the top. I’ve never had any nail, hair or sweating changes. In the beginning my right foot was colder than the left, but now they usually feel same and they are sometimes cold and sometimes super hot and red. I don’t have any swelling, and I have good range of motion except I can’t spread my toes on the right foot.

I’ve had two second opinion doctors tell me I also have plantar fasciitis, and one diagnosed it with an ultrasound. She said there was jagged tissue and a band of fluid that shouldn’t be there (on both feet, but the right was worse). She wanted to do a platelet rich plasma injection or a steroid injection and I declined. My original pain management doctor laughed at the idea that all this pain could be plantar fasciitis. I believe I have CRPS, but that plantar fasciitis is contributing to the pain. When I try to do exercises for PF like rolling a ball on the bottom of my foot or stretches it can aggravate the CRPS.

I also have generalized CRPS symptoms like a sunburned feeling all over, muscle twitches all over, and anxiety. I am on gabapentin, baclofen, Peapure, and viibryd (an antidepressant). I have tried Topamax and Cymbalta but couldn’t tolerate them. I had a 5 day lidocaine infusion in March, but didn’t get any pain relief at all from it and it actually increased the all over skin burning. I have also tried ketamine cream, and a CBD topical salve I made from medical marijuana and neither of those helped. I have done biofeedback, acupuncture, and massage, and am currently doing physical therapy, graded motor imagery, cognitive behavior therapy, the paleo autoimmune diet, and I swim about 3 times a week.

My doctor doesn’t think sympathetic blocks are useful, but I am switching care to one of the doctors I saw for a second opinion and will discuss it with him next week. I had a biopsy for small fiber neuropathy and it was normal. I haven’t had a bone scan, EMG or nerve conduction study. I’m not sure what I will try next, but I would like to do a ketamine infusion, low dose naltrexone, or try switching to Lyrica. My doctor is sending a referral to Stanford, so hopefully I can get some more options there. But I’d really like to get to the bottom of what is going on and if I can reduce some of the pain by healing the fascia.

I used to be a laboratory technician and haven’t been able to work since December. I’m sure this is true for most of you, but before this happened I was very active, hiking, jogging, traveling, being a mom. Now my life is completely different. I know I may never be back to how I was before, but I won’t give up on finding enough pain control to be more mobile and happier. I’m looking forward to being part of this group! Thanks for listening and for any input you might have!
Missy