I am telling my story about my nightmare of becoming sick with RSD Stage 3and Fibromialgya as I was made fun of, told it was stress, carpal tunnel, in my head and that I just needed to ignore it!
It started with a bad fall on my right arm at the end of 1999 and in the beginning of 2000, I was at work and my wrist froze with burning pain. I went to Urgent Care and a couple of x-rays later was told that I had Carpal Tunnel. 3 years later, still not getting better with this one Dr., he said I needed to do surgery and I had to wait 6 months, so my parents said they would pay for the surgery as long as I got another opinion and the new Dr. was so mad he didn't charge me the $3,000's for the nerve test because I didn't have Carpal Tunnel! Moving forward and 15 Dr.'s later, the general concencous was that I had RSD and Fibromialgya, but since I had it already for 3 years, I was now in stage 3. The PT never worked and the cold made it worse of course. At this stage there isn't much the Dr.'s can do for you. Yes I had the Stella Blocks and almost chocked to death infront of my Father in the Hospital, FUN, and played with a mirad of medicines until my 7th year when we found medicines that somewhat helped; 700 mg of morphine a day, Hydromorphone, Xanax, Topamax, Fioricet for my constant migranes, Trazodone for sleeping (even though I get maybe 2 hours at a time,) Wellbitrian for depression, Compazine, (Nexium, Amitiza, Carafate, Senna S, and Stool Softeners are medicines for constipation as I now have a high hyana(?)) plus vitamin's D, E, B, Women's Daily, Joint stuff, Fish Oil, and Milk Thistle. My bones in my arms and back are now deteriating as well. The RSD has spread so much it's in my legs, angles, fingers, wrists, neck and arms plus constant migraines. I also have an Auto-Immune Disease. I see a total of 4 Dr.'s; Colonoscopist, Phychiatirst, An Internest and a Pain Specialist. They all keep in touch so everyone knows whats going on. All my Dr.'s are great except my Pain Specialist. As I stated before I am bedridden and need help with almost everything. I am trying to get in-home care but my Pain Dr. was the only one who never wrote me a note saying I am totally and permanently disabled (Which I am.) I've been on SSA for 8 years now. He never even returned mine or my Mother's phone calls for assistance! 4 days of stress that I didn't need! I live in Riverside/Corona, CA and am now looking for a new pain Dr. which will be a nightmare as most pain Dr.'s are bad around here as I should know as I went to 6 before finding him. I've been told that the pain was in my head etc. but I never gave up as I was in too much pain to do so. I've lost a lot of my hair, constant migraines, cold to the bones, tender skin, my skin sometimes turns blue and I am always tired and in pain. How fun, no one understands because I look normal; my face and body except when I walk with a cane. Everyone says how pretty I am, blah, blah, blah. If they lived inside my body for 5 minutes they'd go crazy as you all know. It's so frustrating! Then a couple of years ago I woke up and could barely breath as it hurt too much. I was rushed to the hospital and since it wasn't a heart attack they left me alone screaming for 5 hours thus losing my mind. It turned out I had peracardious, the heart becomes too large for the rib cage, it's extremely painful. I have a PPO so I thought that at least I would get some help sooner than 5 hours. Instead I was told to be quiet or they were going to do a 51/50 on me! They kept me in the sound proof room! When I didn't stop crying they did a catscan and discovered it. They quickly became nice and gave me pain medicine. DON'T EVER GO TO RIVERSIDE HOSPITAL, IT'S THE WORSE! I was in that filthy hospital for almost 2 weeks as they thought they were going to have to cut me open and I was only 43!
I know I am bantering but I have been treated so poorly over the years by Dr.'s and it's so frustrating as I am so sick and dying with a terminal disease and no one seems to care.
I would appreciate any information on a recommendation of a good Pain Specialist in SO. CA. I really am at my wits end. I can't stop crying and it appears that there isn't any chat rooms around for comfort or support which I really need right now. If anyone knows of a good Dr. or Chat room I'd be forever grateful.
God Bless everyone and I hope you all have a peaceful day.
Melanie
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