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personal stories and notes from our correspondents
Shelley Rodriguez
My story goes back about three years ago. I was getting in an old vehicle and a side window broke and hit my head. A few months later I started to have sharp pains in my head, eyes, face and mouth on the whole right side of my face. I went to see my doctor and he knew something was real wrong with me. He sent me to see a Neurologist who ran tests on me and basically stated that he thought I had an overactive amangeation and was depressed. I felt so depressed and looked like an idiot. I then was sent to a Pain Management doctor. On my first visit he found what was wrong with me, RSD.
He then started injections in my head and neck that really helped at first, but my body built up a resistance to the medication and caused me more pain then when I went in the office. I did not know what to do. I was taking Neurontin and Baclofen and that was giving me some pain relief but I felt sick all the time. My bones ached like I had the flu all the time. One good thing I had on my side was that, before the incident, I was very active - working out in the gym with weights. I found that I would come in the gym and work out in servere pain for about the first 15mins and then the pain would get better. Over the last three years I have been forcing myself to go to the gym at least 4 times a week.
It's now three years later and I can say that I only get better over time. It sometimes is hard because, if I'm on vacation, I have to work out anywhere I am at. I have not lost any use of my right arm or neck. I have no bone loss and I believe its because of the weight lifting I am doing. I am very muscular and have to do it for the rest of my life. I am thankful that today I can say I can live this way. I'm not sure about tomorrow but at least for now I am feeling better than I have in a long time. Maybe I can beat this and only God knows for sure. If anyone learns anything from this is that it is very hard sometimes to go in there and get started but It may give you your life back and I believe its worth it.
Thank you for listening to my story and I wish you all the best in
the world. No one really knows just how bad this disease it and the
pain it causes. I do know and I wish you all the best thru those bad
days and wish better days for you all.
Cindi Fox - Arizona
On Sept. 9th I fell rollerblading and crushed the distal radius in my dominant (left) arm. I went with the
ER X-rays to my family doc who said I needed the best hand surgeon as it was a severe break and it is my dominant arm. I’m pretty active, have taught aerobics for 13 years and play a lot of recreational tennis. I had to wait two more weeks to have the surgery, as the surgeon was so booked. That was hard, because it was beginning to feel better, then I had to start the pain cycle all over again. He gave me an external fixator, replaced the crushed bone with medical coral and released the carpal tunnel as a precaution. So far, even though it was painful, I was soldiering through it with some Vicodan and Advil. I had hand therapy, and my thumb was the most bothersome. It was stiff as a board, and my fingers weren’t getting any less swollen. If I “overdid” it during the day, they would really swell up, as well as my hand. I still weight trained and used my elliptical trainer (I’m 48 and don’t want gravity to win so easily) with one hand. So after 6 weeks, YAY, the fixator comes off. Or is that BOO? Because once that came off I was in excruciating pain. Worse than the original break. I asked for more pain meds. It was starting to look suspiciously clawlike and I had the sensation that everything was wet and cold and sticky when I touched it with my hand. My hand therapist sent an alert to the Dr. who sent me to the Arizona Pain Clinic. The pain Dr. scheduled me for an interscalene block the next day, and put me on Avinza. I’ve had 4 blocks now and am 13 weeks post break. I would say they have helped tremendously with pain and the swelling is better. Today I have a progress checkup with both Dr.s. and wouldn’t mind more blocks, because the sooner I can get my hand working, the better. I work on it for an hour twice a day and have hand therapy twice a week. I am grateful for the early aggressive treatment and for RSD Alert, which helped to educate me on how to help myself. I’m just beginning to come out of the fog mentally and am starting to feel ambitious again. HOORAY!
Howard - Tampa, Florida
Howard's story now includes photos and been moved to the Stories section. To read it click here.