Originally Posted by miss irie

I'm sorry to hear that things have been really difficult for your daughter (and yourself, I'm sure). I wanted to share a bit of my story with you as I too had a very difficult time in the early stages. I have CRPS in my left leg, which started after knee surgery in Sept '03.

My ortho surgeon became very concerned as I was still using crutches after 8 weeks (Sep-Dec). The suspicion that I had CRPS was voiced for the first time. Despite physio sessions 2-3/week I was unable to fully extend my left leg and remained incapable of walking without crutches. The exercises I was performing in physio were of little benefit as pain was a very real obstacle for me. Frustrated by my lack of progress, my ortho surgeon performed a knee manipulation under general anesthetic. We hoped that his bending my knee would improve my range of motion (ROM). The procedure was performed just before the Christmas holiday — it certainly did help.

My physio sessions began again in January. The majority of my exercises were now conducted in the hospital pool (minimum water temp 90F). This was the best thing that had happened as I was finally able to begin weight bearing and exercising my leg. Also, I was seen by a pain management specialist who confirmed that I had CRPS. I began receiving a lumbar sympathetic block (under fluoroscopy) every 2nd week (January thru July). I found the blocks to be painful but I strongly believe they were beneficial to me.

Over the next few months I was finally able to bend my knee but, unbelievably, my leg would no longer fully extend. In May a 2nd knee manipulation was performed under general anesthetic. I wore a cast for the following 10 days. Then for the next 4 weeks I wore a removable full-length leg brace/cast during the night. This would forcefully hold my leg straight while I slept. I continued physio sessions in the pool and was finally able to ditch the crutches and walk with a cane.

As you know each person responds differently to treatment plans and I thought it might be of some help to you if I included the medications I was taking at that time. I was prescribed Gabapentine but I was not able tolerate this medication. I took Tylenol 4 for break-through pain, Effexor XR 1/day, and Codeine Contin 2/day. I also began taking Prednisone 5mg/twice daily for 5 weeks. The combination of blocks and medications significantly decreased the swelling, redness and burning pain. Pool therapy was critical factor in my progress.

As of today, I attend a local Community Centre and use the pool there. It is critical that the water temperature be very warm so I had to check around first to be sure that the facility would work for me. I try to take a short walk each day. I am not in remission and my condition has continued to deteriorate over the last 4 years — I hate to think what condition I might be in had I not had these treatments early on in my illness.

I wish you the very best. I'll keep you both in my prayers.

Catherine (Miss Irie)

P.S. Many drugs can cause severe constipation. I take a stool softener every night and also a Senna laxative a couple of times each week. The dosage can be adjusted as required. These are non habit forming.