After close to 15 years of dealing with CRPS and fractures— I still do not have answers as to why I continue to have fractures and I’m at —give or take a few —106 fractures. After seeing many specialists and being denied by the Mayo Clinic, my doctors are leaning towards MCAS and even possibly mastocytosis as the cause — excess mast cells triggering inflammation which may be leading to all the micro-fractures in my poor feet.  Everything else my doctors have thought it might be comes back negative. To date there is no genetic cause. CRPS also can cause fractures but not too this degree, so it could be possible that MCAS and CRPS are working in tanget to make my metatarsals extra fragile. I would love to have a treatment that stops the fracturing! Reclast worked for a moment!My dream would be a CURE for the CRPS pain AND for the fracturing!! When my insurance company, doctors, hospitals/clinics and the pharmaceutical companies are able to provide me with my medications and treatments without any glitches, my pain can be well managed. It’s when I’m denied my medications or treatments that my pain gets out of control—I burn like I’m on fire, develop extreme fatigue, weakness, difficulty walking, spasms, tingling, experience color changes, temperature changes, nail changes, etc.

All this began back in 2010 while I was pregnant with my second daughter and working as a nurse. I developed a simple stress fracture to my right 5th metatarsal. Five months later, a second fracture occurred on my 4th metatarsal along with continued pain. I was finally diagnosed with CRPS in November of 2012 when both my feet changed colors (purple/black color) at an orthopedic appointment. I had continued to have pain in my right foot, burning pain, that was also had moved to imy left foot. After that appointment, the dusky color changes and then red color changes began! The burning pain in both feet continued and I started to have pain in my right shoulder. Life quickly changed! Spreading occurred fairly quickly! Before I knew it, the CRPS was in all four extremities and my back. Not long thereafter, it spread to my mouth and to my torso and chest. By 2014 I was considered full body by my USC pain doctor. By 2018 it was internal. You learn to adapt to the changes. CRPS ebbs and flows. I’m no longer scared. I know I’ll get through the hard patches. 

We need research so that we can get FDA approved treatments. Even the ketamine infusions I receive are not FDA approved and they truly keep me functional! I’m currently on a daily medication, Savella,  that works amazingly well at controlling my everyday symptoms. Unfortunately, Savella is prescribed to me off label as it’s used for Fibromyalgia. My insurance company has decided they will not pay for it this year and I’ve been on it for almost 10 years! Without it I cannot function. It hurts to use utensils, hold the steering wheel, etc. My body goes into spasms, burns like I’m on fire, turns red, goes into a high fatigue state, etc. I’ve fought my insurance and lost (3) appeals. I’ve applied for financial assistance from the manufacturer and been denied. I finally just won an appeal with the manufacturer! It shouldn’t be this difficult to get the medications we need for RARE DISEASES! 

The non-profit RSDSA raises money for CRPS education, awareness, and legislative advocacy. Any monetary support you can provide would be greatly appreciated. No amount is too small!