I have an appointment this week with Dr. Richeimer at USC Medical Center this week and am having some hope again. I learned about him from this site and am very thankful for that. I was diagnosed with CRPS in January by Dr. Joshua Prager in LA. He thinks I have had it for years, but it is not typical.
My pain is internal -- pelvic pain and abdominal pain. It's a long story...beginning with the feeling of a knife stabbing me or shards of glass in my left pelvic area and urethra. This was years ago - 1995. I went to doctor after doctor and was always told everything was fine. By 1997 the pain was also in my bladder, and I traveled to a specialist who diagnosed me with interstitial cystitis, a painful bladder disease. Every treatment for IC was tried, and failed, including DMSO and heparin instillations in my bladder and two hydrodistentions (where the bladder is filled with water under general anesthesia until tiny hemorrages called "glomerulations" start bleeding, which is a hallmark of IC) Finally, the head of the urology department at Stanford wrote a letter saying that I had "refractory IC" - non-responsive to treatment. By this time I had been suffering for over 10 years and just getting by with pain medication. Besides the sharp burning and aching in my bladder, I still had the knife pain, which was becoming unbearable. Sitting was impossible and I was starting to walk with a limp. The pain was so bad I had to quit working and go on disability. I had to stop driving and became housebound and bedridden for much of the day, using ice between my legs and a heating pad on my abdomen 24/7. By this time I had also been diagnosed with PN (pudendal neuralgia) and then PNE (pudendal nerve entrapment). That explained the knife pain - it was nerve pain. Unfortunately PNE is a rare diagnosis and there are only a handful of surgeons in the world who treat it. In the next two years I had three PNE surgeries, and my pudendal nerve was found to be extensively damaged.
I guess I should also mention that along with the heavy duty medical treatment, I tried every holistic treatment first - people are always asking me if I have tried acupuncture, meditation and healthy regimens... I have. Because of my bladder pain I cannot eat or drink anything even remotely acidic or spicy. I even drink high PH water.
Every treatment and surgery has failed, so now I am just trying to address the pain. With Dr. Prager I had a trial of 3 days of ketamine infusions, which seemed like a miracle at first. For a couple of days it was like I was my old self. My sister and I were crying with joy when I could take a walk with her after the 3rd day of treatment. But then crushing pain took over my bladder and I was in a fetal position for several days. It started on Friday evening so I had to go over the weekend just leaving messages for Dr. Prager. On Monday he called and said that the ketamine was causing the bladder reaction. I had read that ketamine use among addicts was causing damage to their bladders and asked about that ahead of time, but was reassured that in a controlled hospital setting where I was closely monitored this would not happen. Surprise surprise. For the past two months since the ketamine infusion I have had increased pain, the kind that can't be controlled with the medications I have.
When I see Dr. Richeimer next week I am going to ask about an intrathecal pain pump, which is what Dr. Prager advised after we knew I could not tolerate further ketamine. The other option was SCS - sacral neuromodulation, but with pelvic pain it is complicated and I was told the results would be less certain.
At this point, I just need help with pain control. I feel like I am being tortured. When it is so bad I cannot get it under control I don't want to have to keep going another day. I know that is a normal feeling and I am grieving the loss of my body and former life. I am so hopeful that Dr. Richeimer will have some cutting edge pain treatments in his magic bag that can help me, or that the pain pump will be the answer.

Thanks for reading all this! I'm glad I found this site.