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Old 05-11-2010, 12:56 AM
5280Katie 5280Katie is offline
Junior Member
 
Join Date: Apr 2010
Location: Denver
Posts: 38
10 yr Member
5280Katie 5280Katie is offline
Junior Member
 
Join Date: Apr 2010
Location: Denver
Posts: 38
10 yr Member
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Hi Marie - you've found a great place with really knowledgeable, helpful folks. A couple of things in your post made me think of some things. The color snd coldness you describe.

I've had RSD for 17 years after an open Colles fracture of the left wrist (snapped the ulna, too). Both my ortho surgeon and my physical therapist were RSD "nuts" (totally immersed in it, wrote many articles about it - I loved learning how/when it was discovered!). Bright redness and searing heat (others can feel the temp differences at the skin) are common. They also defined this bright redness as a common, preliminary visual marker tight after the trauma. I agree with MrsD (she is an excellent resource!); see the RSD forum. There may be others with RSD that have your symptom types (purple, cold).. My mom also developed RSD when she had a stoke. What I really want to convey is that the drug Neurontin (gabapentin) has worked wonders for both of us. I know other RSD folks with good resultls.

I was completely misdiagnosed with Raynaud's a year ago. I had pure white (like a corpse) hands, top and bottom, from the fingertips to 1" above the wrists. They were ice-cold to others' touch, but I felt intense, burning pain inside them. The knuckles were severely swollen and I was sent to a Rheumatologist (I have severe spinal, hip/pelvic arthritis, but not rheumatoid). He immediately ruled out Raynaud's. The outer coldness was right, but my inner pain type and the hand color were completely wrong. Raynaud's hallmarks (I learned it's referred to as the "red, white, and blue disease) are quite different, usually. My current PT has it. While her hands are icy, she could probably crush a polar bear's paw with little pain in them.

Both RSD and Raynaud's occur in the feet. Raynaud's is often treated with blood pressure medications. Also, with drugs like Amitryptyline (typically used as a mild antidepressent). Both increase blood circulation through vessel expansion.

Rheumatologists and neurologists are often good sources to pinpoint diagnoses. I ended up having neuropathy from permanent nerve damage, and internal spinal cord damage from vitamin deficiencies (B-12 the biggest contributor). However, be sure to inquire about their expertise with RSD and Raynaud's when considering appts. Not all are experienced with or have any interest in these conditions.

Sorry for the length of this; I just spent a year (including lengthy hospital stays) recovering from a very severe illness. Of all the things that were "broken" by-products. diagnosing the extremity problems proved the hardest. Please, don't wait too long in seeing whoever you choose to see. While I learned exactly what happened to my hands, I also learned that the damage is permanent. We can ease the pain some, but the loss of their use is permanent. Unfortunately, there were far more serious problems before they got to my hands. You wouldn't believe how long it took me to type this, and I know it's probably still filled with tupos! I hope you find something worthwhile in it Good luck to you.

Last edited by 5280Katie; 05-11-2010 at 01:12 AM. Reason: typos I missed
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