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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


( this part removed by the moderator )

As for the pain of this in the body, it's a mover for sure. The physical signs of rsd that a doc will look for is color change to the skin. This can be either mottled, blue/purple/pinkish color or very red. Change in skin temp either cold or hot feeling. Shiny and/or thin skin(this can happen at different times and for some takes years. With me it was right away). Changes in hair growth, either it grows fast or it falls out. Changes in nail growth, fast or slow to darn near non-existent. Some peoples nails fall off, others get ridges and discoloration. It varies from person to person. Oh and swelling! :) Almost forgot. Not everyone swells either. I did in the beginning, then I learned to walk again and it disappeared. I only have very minor swelling in my ankles now and my hands will swell some if I over use them.

These are all the things that can be seen and are looked for. It doesn't mean you have to have all of them because every one of us have some and not others. For me, I had cold, mottled purple/blue/pink look to the lower leg/foot where it started and the pain, of course, that slammed me to the ground. I didn't feel any burning at all until about 4-6 months into it. Others feel it from the first day, others a week or so, some not until longer than I did. I had the shiny skin from the get go, my hair on my legs and head fell out, my skin was dry. I've always had oily skin so it was a big change for me. It's been 6 years now and my skin literally flakes off it's so dry. No amount of lotion seems to help either.

It spread full body in 11 months and each time it took another part I noticed the pain, well, the intense pain jumped around a lot. I get stabbing, shooting pain and it can be spearing through a leg one second then in my arm the next. I also feel crushing pain deep in the bone, at least that's where it feels like it's at is in the bone marrow. I get muscle aches real deep that hurt. It feels kind of like when you run a high fever and get all achy except that it's worse than that and hurts too. My joints will get a combo of all of the above at times. If you had to label what you feel, how would you describe your pain? I love "comparing" notes on all the different words we use to describe what we feel with the pain and burning, pretty much everything. :) LOL

This is what is so darn difficult with rsd is because we all have slightly different feelings and experiences, yet also have a lot of similar things too. Some people get osteoporosis right away, some people go months and others, like me, years and years. A good test just to see if there are those bone changes is a bone scan. The thing to stress about this though is just because no changes show up doesn't mean you don't have rsd. I had rsd in both legs/feet and hips when I had the first one but the only thing the first scan showed was the healing fracture in my knee. The second one done exactly a year later was "normal". At that point I'd had rsd for a year and a half and was had been full body for 6 months. I can't afford the hundreds of dollars to get another one done but I'm pretty sure it would still be normal for me. I also feel lucky that both docs who ordered the scans knew that normal didn't mean no rsd.

I really hope everything going on is anything other than rsd but until you see those docs all we can do is give you our experiences and speculate. I'm sorry to hear that the sensitivity is a bit worse than before. When is your appt or appts again? I forget if you even said.

Hugs,

Karen





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