• GWN_54 GWN_54
    March 28, 2010
    Can RSD/CRPS and/or Fibromyalgia be present for 30 years before fully kickin in?
    GWN_54 GWN_54
    March 28, 2010

    I was in a near fatal head on mini-bike vs. car crash in '71 and another car vs. car in '90 both followed by unfounded unresolved pain & other problems. In '02 following surgery for an elbow tendon tear the unfounded unresolved problems exploded now involving multiple areas never injured and was later identified as RSD/CRPS and later Fibromyalgia was added. Of course the LTD insurance bandits and the SSA latched on to the negative & minimal testing and I am now a liar and Doc is an idiot. The question is could all those unidentifiable problems dating back to '71 have possibly been the RSD type junk just teasing me until kicking in 110% in '02? Many signs match but others don't. I adjusted to and worked a very nice Industrial Maintenance job for over 30 years until my very high pain tollerance level was exceeded. Whatever it is has cost me everything but my life. You other folks out there, don't count on the SSA following their own SSR 03-02p (October 20, 2003). They don't have to play fair. And don't count on getting much out of a lawyer with the $5300 cap. I am still not sure Doc has this right or if it is all a name game of the unknown.

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FROM OUR EXPERTS

  • Cort
    Health Guide
    March 28, 2010
    Cort
    Health Guide
    March 28, 2010

    Fibromyalgia is typified by widespread body pain. It's believed caused when the pain processing sections of the brain mysteriously upregulate - often in response to a single incident. At the same time it appears that the pain inhibiting mechanisms in the brain down regulate. If you had mysterious pain after you'd purportedly been healed then I would think it's quite possible that your pain regulating system started getting out of whack years ago and it finally into what is FM or RSD. 

     

    Disability is still a difficult process for many people with these types of diseases. I wish you the best of luck! 

    • GWN_54
      March 29, 2010
      GWN_54
      March 29, 2010

      And I thought you could only blame a machine problem on FM.  My Full Academic Scholarship to Princeton Board Certified in Family Practice 'idiot' for decades told me about the same thing (he dumbed it down for me) six years ago.  He said it was RSD.  Then neurosurgeon friend of his decided it should be CRPS.  Next neurosurgeon wouldn't call it anything she couldn't cut.  Lack of a diagnosis code turned it into Generalized Pain.  The fibromyalgia was added to it last year.  This gets viewed by the disability folks much like the start of a new event each time they do the name thing.  This BS just keeps on rolling on & on & on...  Thanks for the luck.  I need da good stuff.    

       

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FROM OUR COMMUNITY

  • sue
    sue
    December 27, 2014
    sue
    sue
    December 27, 2014
    Hi Gwn - I run a support group for people with RSD/CRPS and also for chronic pain suffers. Many people who have come to our group have had previous injuries which have healed normally. Years later, a new injury or surgery has triggered the RSD/CRPS response. This is true for me also. You see, it is NOT just due to an injury, else everyone who has been in an accident or had surgery would have RSD/CRPS. You were born with a predisposition to autoimmune disease. This means you COULD develop ANY autoimmune disease during your lifetime. Usually, it strikes when you are older, because embryonic stem cells protect us as infants and children. We lose them as we age. This is not to say that no children can get RSD. It is on the rise even with young children, due to inherited autoimmune problems at birth. However, you need to ask your family about who has autoimmune disease. Most families with this issue have MANY members who have 1,2, or 3 autoimmune diseases and do NOT know it ! Mothers, grandparents, cousins, aunts, etc ALL are included in family for this purpose. You can get a list of the 80 + autoimmune diseases at www.aarda.org . I was born with Pneumonia. My life seemed normal until I had childhood illnesses. I did not recover as fast as others, and twice my mother was told that I had leukemia (age6) and Lupus ( age 17), neither of which was true. I had several injuries all to my left leg, and was fine until 2003, when my left leg was crushed due to a fall through worn floor boards on a porch. The damage seemed slight- no bleeding, no broken bones, but later I learned that I had a lot of internal tissue damage and much later we learned that I had nerve damage. Physical therapy helped the muscles, but an improperly placed TENS unit on the injury spot started the RSD/CRPS. Usually, you have previous injuries, even a stubbed toe which heal, then something major like my accident or a surgery for something simple and you wake up with red hot pain in an area unrelated to the surgery. If you want in depth information on RSD/CRPS - the how and the WHY - go to the national website - www.RSDS.org and also www.rsdhope.org. Also get the book called THE OTHER BRAIN written by Dr. R Douglas Fields , he is a PHD at the NIH ( National Institute of Health). He explains HOW the nerves in the brain work, WHY animals and people get RSD/CRPS, and chapter 9 is about the Glia cells and how they stimulate your nerves to create pain. Best treatment is NOT a lot of drugs, but to follow a heart healthy diet (Mediterranean diet), MOVE around as much as possible, rest when YOU need to, and do as much as you used to do - until you become tired. Each of us learns our own "work, rest, etc. limits. No one but YOU will know what you can do, and what is not possible right now. In time you may be able to do more. I was bad in 2003, but fortunately got treatment EARLY and that helped a great deal. IMPORTANT - NEVER EVER let anyone use ice or cold water on you - it will increase the pain level a million times, and it CAN cause the RSD to spread to another limb or even to ORGANS in your body. I could tell you horror stories of what uninformed doctors have done to patients. LISTEN to your body, get a Dr. who understands and treats RSD - NOT just a pain management doctor - you need to learn how to decrease the pain NOT how to mask it with drugs. Too many people reach for opioids and need more and more and more. The goal is to MOVE a lot - preferably in a WARM water pool - with aquatic therapists who KNOW how to treat you. I have seen many pain patients improve in the last 10 years, after completing a warm - (90 degrees or higher) aquatic program. When I get too busy or ill to go to the pool, I notice a BIG change in the way I feel- tired, muscles aches, flare ups, etc. This is a LIFELONG committment , but it is YOUR body, and ONLY you know what the limits are. There is ongoing stem cell research now which holds much promise. Embryonic cells are taken from the Umbilical cords of babies. NOT aborted babies - ANY babies. The umbilical cords are usually thrown away after birth, but have been found to carry the wonderful embryonic cells we need to fight off disease. We expect the "cure" will be found for ALL autoimmune disease from these discoveries, although we have no timetable yet. I hope this answers your question. Sue READ MORE
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