OT fibro....Carolyn.. fmhurt..About RSD-CRPS..

Discussion in 'Fibromyalgia Main Forum' started by daylilyfan, Jun 21, 2006.

  1. daylilyfan

    daylilyfan New Member

    I am sorry I just saw your post to me. I have not checked this board in a couple weeks.

    Yes, it sounds like you might have RSD, but there are many things that have some similar symptoms.. peripheral neuropathy (sp?) and some other things - but nothing that is really similar to the real RSD / CRPS.

    The number one problem with RSD is finding a doctor that knows what in the world it is, and then, what to do about it. If a doc does know about it, often they learned something about it 20 years ago, and give you outdated treatments. There is a lot of research being done in it now, and treatments are changing fairly rapidly.

    Look up online the Reflex Sympathetic Dystrophy Foundation of America for a good start on information. They have a lot of information and articles. Also, look up Dr. Hooshmands' RSD Puzzles. Lots of good info there.

    There are a couple good message boards for RSD. Unfortunately, there is not a good way to tell you how to find them without breaking the rules here. I think it is ok if I tell you that you can look for boards and RSD, even for my user name, daylilyfan... I go by the same name in them. There are two that I am on that are the most active and have a really good base of people. Once you find them, and join, you can ask for doctors in your area.

    Some people have luck with pain management doctors, some with physiatrists (that is not psychiatrist - a physiatrist is trained to deal with a way of pain relief) some with neurologists. I see a pain management doc at the Cleveland Clinic once a year (I have seen her one time so far - it is hours away from where I live, but she has a lot of experience with RSD) and my family doctor, a local pain management doc, a neurologist, a rheumatologist, a massage therapist, an occupational therapist. My family doc is my main doc though, and she is AWESOME. She has gone over and above to step in and learn about RSD.

    The pain is a living nightmare... a hundred times worse than fibro.... and often not affected by narcotics (my case). I might as well just eat lifesavers as take pain medications. You are fortunate that yours has not spread in the amount of time you have had it... especially without having proper treatment. This gives me hope that you actually do not have it, and have something else going on, or have a very mild case. I have had it before - and it went in remission - but it took 4 years to do so. This time, I have had it 10 months, and it is spreading.

    With the time you have had symptoms, you should have grouved toenails, hair changes, shiny skin, swelling, coldness, sweating, insomnia, possibly depression. Light breezes are very often painful enough to make you scream. You won't be able to stand having anyone touch your skin lightly... for me, I don't have the breeze or light touch, but if someone touches me normally... that makes me scream... like in a friendly way, the touch my arm as if to say "hey, how you doing" and touch me on the shoulder... I'll hit the ceiling. Muscle spasms, blurry vision, memory problems... there are a LOT of symptoms. You may not have all of them... or may not have all of them at any one time. Another common one is body temperature going up and down. One hour mine might be 97.1 the next it might be 100.5 -- not because I am sick - because my sympathetic nervous system, which is what controls body temperature is confused and does not know if I am hot or cold. So all day long I put on and take off a sweater.

    Good luck to you... I will try to remember to check back in this thread to see if you have replied. I checked the "email me if someone replies" so that should help me remember! LOL.

    In the mean time, I'll remember you in my prayers that this is NOT what you have.

    Jules

    [This Message was Edited on 06/21/2006]
  2. daylilyfan

    daylilyfan New Member

  3. daylilyfan

    daylilyfan New Member