Julie,

I don't really know what stage I am in. None of my doctors talk about the stages as they are not used by too many doctors anymore. Taking a guess, I would have to say I am in stage II but I do not know. I have generalized osteopenia that was revealed in both the x-rays and ct scans, and severe muscle atrophy in my calf and some in my thigh. My pain does subside some from time to time which I think is a result of the meds that I am on. My original site that the CRPS started in is my right ankle, foot and up about 5-6" on my lower leg. The burning was the first thing that I noticed and that happened in January a couple of days after surgery, after the nerve blocks wore off. I did not notice the discoloration until the splint came off 4 weeks after surgery when they put me into a cast. It has crept up my entire leg back in June. That is when I insisted on having a doppler done to rule out a deep vein thrombosis. In late July oddly enough, I started having symptoms in my left wrist. After that my left leg started, followed by my shoulders, neck, upper back, right arm and then my left side of my face. I have no issues with memory but do have issues concentrating. So to tell you what stage I am in, I do not know.

For treatment, I was diagnosed 7-21 of this year and was started on gabapentin, (neurontin) starting at 300mg then going up to where I am at now, 600mg t.i.d. When I started taking gabapentin 600mg t.i.d., I also started 25mg amitriptyline, which is now up to 50mg. I was also taking hydrocodone 10-325 as needed. I have also been doing at home pt when I can but that is not very often. At the beginning of September, my pm at the time suggested a lumbar sympathetic block but being 8 months out at that point and having issues in other areas other than my right leg, I decided against this. His next suggestion was SCS. That's when I found my new PM. He has kept me on the same pill regiment that my old pm had me on but added methadone 5mg t.i.d. That seemed to help a little, but have been having more and more bad day again over this past week. He does have more options that he wants to try but to tell you what they are, I do not know. He has mentioned a few injections he wants to try and a few other pills that he wants to try as well. I just can't remember what the pills were and he did not mention what the injections are.

For anybody that is thinking of getting a prescription for methadone, please have an ECG or EKG done first. Methadone is known for causing sudden cardiac death in those with a genetic long QT problem. This is from mrsD, one of our moderators.

I hope this answers your question.

Alaina