About Me: Female, 69, Hemet, CA, member since Aug 2009
I currently have suffered from total body CRPS/RSD since minor foot surgery in 1992, which triggered this monster. I also developed Fibromyalgia about nine years ago when leaving my Pain Physician;s Office when I was rear-ended. Although it was a minor fender bender, my
[More] pain doc said I had developed the Fibro from the accident. I have 15 of the 18 tender points. I have suffered from Staph infections starting in the late 1990's from all the implants put in and taken out. In 2002, MRSA finally reared it's ugly head via a blood culture and I was transferred to a major University Hospital in the Inland Empire in S. California and put into isolation.
I recently spent 45 days in the hospital, longest ever for me, due to Cellulitis/MRSA in my right hand, which I get every year due to the severe hand contractions from the CRPS/RSD. I had surgery, again, and I asked the Plastic Surgeon to please order OT and a CPM machine post op but he refused, so now my right three fingers are more contracted than befoere and because the CRPS/RSD causes swelling and perspiration from the wrist down, it makes a perfect breeding ground for the recurring MRSA infections.
Because of my past medical history as an EMT, a Critical Care Tech and an ICU Nurse Tech, I do all my own infusions and clearing of my Portacath when receiving the IV Vancomycin and IV Benadryl, as I develop "Red Man Syndrome" and it's getting worse each year to control the reaction. I think I may be developing a resistance to the Vancomycin, and I can't take other antibiotics, leaving me wondering what will happen should I develip a reaction to the Benadry..
They were going to teach me how to flush my Portacath, but because both wrists are fused and do not go down, when on the Medication, the Home Health RN comes out once a week to replace the Huber needle and dressing change.
I am also trying to start a new, national non profit organiation to educate Emergency Department Physicians about CRPS./RSD as they don't seem to have a full understanding of Breakthrough Pain or BTP. All they see is our laundry list of meds I call it and they freak out, afraid to give us anything to help wth the now out of control pain. It's very frustrating for the both of us. I hope the organization can also help patients who suffer from this disease. It robs us of our lives, there is no cure, only a glimpse of hope of remission.
Most of us who suffer the most from the CRPS/RSD have been through a living hell. On the McGill Pain Scale our pain is double that of a Cancer Patient's Pain, but I don't want tosay their pain is not just as damaging to the body and soul of any pain patient, only put into perspective just how severe our pain really is.
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