Hi,
My name is Momi. I'm 52 years old and have been having a lot of medical problems for almost 5 years now. It started with renal failure due to contrast die for a CT scan. I was on dialysis for almost 4 months with no progress until I came to Mayo for a second opinion and was found to have an underlying kidney disease, Minimal Change Disease. I was treated with steroids, started recovering and tapering off the prednisone. I began having a lot of pain all over at that time. I then relapsed with the kidney disease and had to go back on the prednisone which took my pain mostly away. I thought the pain was from the prednisone withdrawal so tapered VERY slowly, working with an endocrinologist but the pain was still there. Eventually I was seen by rheumatology and diagnosed with undifferentiated spondylitis and fibromyalgia. I have also had 3 pulmonary embolisms and a DVT during this time, as well as being hospitalized for pneumonia. The thrombophelia doctor believes I'm getting the PEs as an added bonus of having autoimmune diseases as I have no other clotting disorders/factors. I also ended up with another autoimmune disease called lichen sclerosus. I also had 2 teeth break off at the root and a broken ankle from doing nothing in particular, though all my bone density tests come out fine. Anyway, I'm on blood thinners for life probably, as well as prednisone at a low dose. I tried humira for the spondylitis without much result. I've been having remicade infusions for the last year and a half which helps somewhat. I have a lot of back/neck/shoulder/elbow/fingers/hips/knee/foot pain, especially where the ligaments attach to the bone. I tried gabapentin and cymbalta and had to discontinue from terrible side effects. I can't take any NSAIDs because of my kidneys. I do physical therapy, warm water therapy, acupuncture, yoga and meditation, aromatherapy, psychotherapy, eat a clean diet with very limited results. I take oxycodone regularly which helps me to function at least a little. I am no longer able to work which breaks my heart as I loved my job. I haven't been able to fully accept the reality of my new life and the fact it probably won't get much better. I've been really depressed and anxious as a result and also take meds for that. I went to the Mayo's 2-week outpatient Mood Disorders Program this fall as I had been feeling so down, and sometimes suicidal. While it was a good program and I certainly learned some new skills, I'm not sure it was the right fit for me. Maybe I should have tried the Chronic Pain Program. I also attended the 3-day fibromyalgia program at Mayo the year before and I think I didn't go the the Chronic Pain program thinking it was probably a more intensive version of what I learned in the fibromyalgia program. I just wish for a way to come to accept and move forward in this new life with gratitude and happiness. I mostly live with a feeling of loss and hopelessness. Sorry for the long version... I look forward to connecting with others going through the same sort of things.