Anyone Else with FM and RSD????, Need Help!!

Discussion in 'Fibromyalgia Main Forum' started by pamsue, Feb 16, 2006.

  1. pamsue

    pamsue New Member

    Just found out today that I have RSD too. That is why I can not because my leg just keeps getting tighter and more sore. The physical Therapist could not believe all the nerves in my leg that are affected by this.

    I am scared because the FM pain is bad enough now this, can any one help me with this, do any of you have it too.

    It is just devastating to hear this and wonder how I will get through it all now.

    Sorry to be so down, you have all been so helpful I really appreciate you all

  2. Yucca13

    Yucca13 Member

    I'm sorry to hear of your diagnosis of RSD. Did you have a traumatic event that triggered it?

    For me, many years ago, it came on as the result of a drafting board falling on my right thigh (I was cleaning the garage). The next morning I leaned over to tie my shoe and was immediately in excruciating pain. I ended up in the hospital for 10 days on demerol and then was sent home to find out that I couldn't walk! It took about two months to get a correct diagnosis. The pain was horrendous until I was given some injections of prednisone. Reflex Sympathetic Dystrophy usually affects the opposite side of the body where you experience a trauma. After I had the steroid shots the pain became more manageable. It affected my foot (in the arch especially) and my calf. Even fifteen years later, there is nerve damage in those areas, but I feel very fortunate to not have extreme pain there anymore.

    I haven't kept up on the latest treatments, so don't know if they are using the Gabapentin drugs (since they seem to be prescribed for nerve related problems).

    I kept moving (with a walker for a while) and was determined that I would continue to walk. Keep searching for treatment options and know that it isn't always something that will affect you for life. Please don't be afraid to ask for proper pain control, as it is needed to cope at times.
    Best wishes,
  3. bozey

    bozey New Member

    I too have RSD, for 3 years now. Mine showed up after having carpal tunnel surgery on my left hand. It took 10 months before I was healed enough to go back to work.

    For me, it hasn't been too bad with the exception of pain in my left wrist expecially if it gets cold.

    Also, my primary Dr. tells me to not have any surgerys(because of the delay of recovery). I had my gall bladder taken out in Oct.(only because it was really necessary) and I still have a slight soreness in my belly.

    And right now I am going through plantar faciatis(not sure of spelling of that) but, I have a bone spur on my left heel and haven't been able to put my left heel on the floor yet. Long story short on this is that the foot Doc said with having FMS & RSD, it will take longer for my heel to heal. I've had one cortizone shot so far. (Hurt like the dickens by the way).

    Actually, I was really surprised that the doc even acknowledged FMS but he seemed to know about it.

    I don't know if any of this info is helpful for you since it is affecting your whole leg. I feel bad for you as I can not imagine how painful that must be. I hope you find the answers you need and get the help you need in helping with your pain.



  4. pamsue

    pamsue New Member

    Yucca and Bozey,

    thank you so much for responding. I am so sorry you both suffer with this too, I appreciate your kind words. Yucca, I think my started from my spine, from what they tell me. It is affecting my right hip and shooting down my leg. My rt hip is swollen and warm to touch, the thigh is tight my calf is tight and my foot and ankle are very sensative to touch. My lower leg is always very cold and splotchy. I have a hard time sliding my shoe on my rt foot because it is swollen.

    So, i don't know what to expect. I am going to be having therapy, which will include ultra violet light on the leg and I don't know what else, but they told me the worst thing I could have been told before was to keep exercising that that just made things worse

    What are you going to do, I am used to doctors making bad decissions ever since FM diagnosis because even that took years before someone figured it out and they only did because I just kept demanding they send me to someone until they can tell me why I am in so much pain

    Thanks again it is so nice to have you here and be able to try to figure things out together.


  5. laura81655

    laura81655 New Member

    I have been having so much pain my left foot for the last 13 months. It turns colors, bluish, red, hot and freezing.
    I finally got a diagnosis of "maybe" RSD.

    I know that "Daylilyfan" on this board has it and the Sympathetic nerve blocks helped her. From what I have read not everyone responds to them.

    What meds are you on for it? The low dose hydrocortisone along with Elavil and Neurontin is what I take to manage the pain. Only helps somewhat.

    I hope you get some relief, I know how difficult this can be along with FM.

  6. pamsue

    pamsue New Member

    Hi Laura,

    TY so much for your response. Sorry you have had to deal with this too. I am fairly new and do not know the other person on the board that you mentioned but it seems from what I have read a lot of people with FM also have RSD.

    God Bless you all, I will say it is no fun


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