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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Dee and welcome! Sorry it's because of this but welcome all the same.

I suppose I'll start out by listing the "main" symptoms of RSD. The 1st 2 biggies are pain that should've gone away after an injury,surgery,etc and burning. The things that follow are temp changes to the limb(s) affected, either very cold to the touch or very hot to the touch. You mention yours fluctuates between the 2 and some do experience that.

Color changes to the limb(s) are another biggie. Color can range from a splotchy bluish/pinkish/purplish type of color to outright purple from light to dark or blue. Can also be any color of red as well.

Then usually we all experience very dry skin, changes to hair and/or nail growth which can be faster growth or slowed growth, hair that falls out and hair, like on your legs the hair begins to appear sparse or patchy and the feel of the hair changes sometimes too. Like with me the hair that is on my legs is sparse, a bit has turned black(I'm a red head with very light blond hair on legs and arms or used to be) and it feels wiry now and will stick up off my legs if I don't keep them shaved all the time. Also you mention your nails being brittle which is another thing that can happen along with nails that are ridged looking.

Swelling is a biggie for some but not all of us too.

My story began with a fractured kneecap which was undiagnosed. I was told it was just badly bruised and found out it had a fracture after the 1st bone scan I had done. It spread pretty fast in me and I was full body in 11 months. That means I have it in all my limbs,hips and shoulders, for now. I don't know if it'll spread anymore and have been stable since Jan 2004 with a slight and unpredictable pain/burning thing in my bladder at times.

I take generic vicodin, baclofen and just started back on lyrica last night after doing a trial last year. I finally found a way to afford it through a drug discount card they just introduced here in florida. I cope by just taking things one day at a time or one second at a time on those really bad days. I meditate when I can and try to relax as much as possible. Stress is hard to avoid but I try to not let it get to me so bad. A lot of us also deal with increased pain in the winter time when it gets cold. It's not too bad here in florida but when it does I feel it all over! Worse for those living up north. We can feel when rain,snow or anything else is coming. Oh, another thing that differs a bit for us all is the sensitivity issue. The skin being very sensitive to touch either from another person or from even clothes touching your skin. Some are air sensitive to air blowing across the skin. Some deal with both and others one or the other. For myself, I started off just sensitive to air not touch but have since become sensitive to touch from another person usually only when my pain is higher than normal.

I hope you're not tired from reading. LOL As for how to bring it up with your doctor, the way I would do it is to look around and find reputable sites that have info, print out stuff to do with symptoms of RSD and bring it with you to your next appointment. You could say something like, I'm confused by these symptoms I have been dealing with for x amount of months/years and did some research. This is what I found and it seems to fit what I feel and experience, what do you think? Hand him the papers and then say like, no one has yet been able to figure out why I am having these symptoms and this might be the reason. Do you think that doing a bone scan or getting a block would be procedures that might help solve the mystery? A lot of docs get testy when a patient gets stuff off the internet like that. I don't know how your doc would react, something to think about before you approach him. Or suggest a referral to a pain doc to see if a pain doc could possibly figure out the reason for these symptoms.

We usually see pain management docs because most of them know what rsd is and how to treat it, meds they can give you. A lot of rsd'ers take neurontin or topomax or other drug in that family or an antidepressant along with pain med(s), a muscle relaxer to help the muscle spasms and jerking of limbs. Cymbalta or Lyrica are also two other meds that help some. It really all depends on what works for each person as no 2 of us are on the same combo of meds to deal with all the various symptoms of RSD.

I know it's long but I wanted to be sure to try and give you as much info as possible and answer your questions. don't be shy about asking questions, it's how you learn what you need and/or want to know.

Hugs,

Karen





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