This is my first post here. I was diagnosed with CRPS by a podiatrist in April, but because a radiologist insisted my glowing ankle and foot bones in a bone scan were not consistent with CRPS I have had no treatment, only tests. In the meantime another doctor looked at my X-rays and my bright red leg and determined that I have CRPS.

Right now on a supposedly warm June day I am sitting under a heated blanket with a soft heating pad under my foot, because my leg and foot is so cold. When this first started after a minor crush accident to both feet I could not bear the weight of blankets on my legs and my feet. I still use a small stool to keep the covers lifted.

Since March I have to use crutches to walk, because I cannot weight bear on my right foot and ankle. I bought a device called InMotion so I can peddle while I sit. I am also looking at something called a WonderCore Smart to use as well.

My DEXA indicates that I have osteoporosis in my hip and spine.

When I asked my PCP about treatment he said my rheumatologist would treat me. The Rheumatologist told me the PCP would treat me. The ankle surgeon told me to go to the pain clinic and Pt. now the PCP is sending me to an endocrinologist. I did go to PT before, but I felt it was of minor benefit, because I seemed to get a bit better better, then get worse. The pain was excrutiating.

Since this nightmare began in July 2014 I have had the sum total of 60 pain pills. They worked, but I hated taking them, not because of the opioid, but because of the NSAID. I think no one believed me when I begged for pain relief, because every medical professional referred me to another medical professional, as if I was a junkie. The ER experiences were sad. If I told the whole tale of woe, you might not believe it.

The delay of diagnosis imo has increased my suffering exponentially. And the first doctor I saw did not even write down that I had pain in my feet he determined that I had hip bursitis and sent me hobbling on my way.

I ordered LDN and I am going to get medical Marijauna. At this point I cannot see any downside to treating myself.

I live in Boston and it seems as if no one at my acclaimed hospital knows what to do for me. My PCP told me yesterday I know more about CRPS than he does. This made me really sad.

I am terrified to have a mammogram, a colonoscopy/endoscopy and brain aneurysm surgery for fear that CRPS will spread. One nurse, snickered when she stuck a mega port in my arm. It was left in for 9 hours and not used, despite me begging for someone to remove it. I have lost all trust and I am afraid to put myself in the hands of people who know nothing about CRPS.

Thank you for letting me spew.