[Angelique]

Hello everyone: I have had 7 breaks and countless sprains since the age of 19; at age 35 the ankle would no longer support my body weight, the pain was excruciating and falling down stairs seemed to be my new past time. This is what triggered me to seek out medical attention from the VA. It was discovered the ankle was in pretty bad shape and was in need of a total reconstructive surgery. When recovery was finished and rehab began I noticed that the ankle did not feel quite right. It seemed to always be cold, stiff and painful. When I brought these symptoms up to the doctor, his response was “it’s all in your head” This was in 2008.

By 2009 a podiatrist came into the picture and determined another surgery was necessary to fix my symptoms. X-rays showed osteoarthritis was present. By this time I had lost my job and was losing my home. I moved out of state and took up residence with my parents.

6 months later I am back at the VA, this time a fusion of the Right ankle is necessary, no more maintenance surgeries. Approximately 3 months after the fusion the foot become very angry and turns a bluish/deep burgundy color, it felt like an ice cube. This is when the Doctor’s got a clue. An EMG was ordered and a never conductor test; Results: severe nerve and muscle damage; Diagnosis: CRPS/RSD (go figure) Next step pain management.

1. We began this step with aggressive sympathetic nerve blocks (every two weeks) FAILED.

2. Directly Blocking the nerve (every three weeks) FAILED.

3. Now a Spinal Cord Stimulator is desired, unfortunately the VA’s standard rule is: any elective surgery the patient must have a mental health evaluation and the Physiologist must approve the procedure. FAILED

Reason: The mental health department does not believe that I understand my situation to the full extent and because of depression in the past (which I believe all who live with chronic pain become depressed) the worry is that I will spiral downhill if this final step (SCS) does not work.

Requirements for Approval: I must begin individual therapy and join group therapy for RSD sufferer’s so I can get a better understanding of my situation.

When I first heard this news I was very angry; how dare they deny me the right to try; then tell I don’t understand my situation. However, after reading through some of your posts it has occurred to me that I am completely in the dark about this disease. I had no clue, and I don’t believe that I have stopped crying all day.

I am sorry that this is such a long description of my life but, I have no one else to talk to, the doctors either don’t know what will happen or they have been refusing to tell me truth for fear of hurting my feelings.
Please tell me, what is going to happen to my body? As far as I can tell I have had it for 3 years and have entered stage 3 recently. Things have been happening fast; the blue/red freezing foot; a rash of some sort is on my toes and on the ball of my foot (does not itch) but, have become scaly and I have spots of paralyses. Will this disease invade all of my body eventually? How deformed will my limb get? I’ve seen the pictures; does that happen to all of us? Please help find the answers. I am completely lost.

Thank you so much for your time:
Angelique

[Darlene]

Happy to see you have come to be with us. There are great and caring friends here to assist you, just let us know if we can be of any help. Our shoulders are here for support in many ways. Please keep us up to date on your condition & needs.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene