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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • What is wrong with me - CRPS or neuropathy?

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    Old 04-28-2006, 04:34 PM   #1
    tiogagurl
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    What is wrong with me - CRPS or neuropathy?

    Hi,
    So I'm getting tired of doctors saying the three words "I don't know". I'm new here, heard about it from a friend who recommended it. I posted a similar post in the neuropathy section. Can anyone help me out?

    When it started: January, minor injury, pain progressed, got a lot worse after I competed in a meet (I am/was a collegiate athlete)

    Tests I've had: x-rays, bloodwork, MRIS - lumbar + left hip, EMG, none totally conclusive

    Diagnoses: lumbar plexus neuropathy, possibly CRPS, possibly some other nerve thing, nerve "traction", one doctor thought I had lymphoma!

    Symptoms: PAIN - constant, raning from 3-8 (as an athlete I have a high pain tolerance), the pain is: stabbing, shooting, pins and needles, sometimes burning, especially at night - when I have blankets over my hip it's extremely hard to fall asleep, WEAKNESS - I cannot lift my leg up to my chest, can't get out of a chair w/o my arms, cannot flex my foot, RADIATING/SPREADING PAIN - recently I have noticed more tingling and pins and needles in my left foot - originally my injury was in my left hip, REDISH/BLUENESS - sometimes my foot turns colors, but not all the time, this is also a more recent onset, SWOLLEN LYMPH NODES (for 3 months), white dots and discoleration on nails

    I have been working with physical therapists and athletic trainers, but since they don't know what is wrong with me, it's hard to know what to do!

    ICE makes my pain worse. So does pressure, any kind of pressure. If I just brush my hand over my hip I have pain, and then it spreads over my whole leg.

    I have ONE doctor out of the 6-8 that have seen me who seems like he actually cares. I have felt demeaned by some doctors who have too big of an ego to admit that they don't know. What specialist is the best kind to see for a possible CRPS diagnoses? I feel lost, no one is giving me a definite prognosis, and my athletic career may be over. Please help. Thanks in advance.

     
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    Old 04-28-2006, 04:52 PM   #2
    sharon1030
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    Smile Re: What is wrong with me - CRPS or neuropathy?

    Hi and welcome to the board. From the info you gave us, it kind of sounds to me like RSD rather than neuropathy. The color changes mainly make me think that. I'm not positive, but I don't think color changes happen with neuropathy, but I could be wrong.

    The best type of doc that you should see is a pain management doc. They are usually anesthesiologists who then went for further education to deal with pain patients. That's who I would recommend you see. Good luck and let us know how you do.

    Sharon

     
    Old 04-29-2006, 11:27 AM   #3
    tiogagurl
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    Re: What is wrong with me - CRPS or neuropathy?

    Hi!
    I'll definetly look into that. So far I'm on two types of narcotics, a tricylcic anti-depressant, and ibprofen. I really hate taking medication, but I guess I'll have to get over that for awhile. I have been trying to do some research about RSD/CRPS, and I am amazed at how little known it is. Do symptoms increase gradually, and/or are some more sudden? I've always had the pain in front and around my left hip but now it's spreading down my leg, and concentrated in my foot. I've also read that there are two types, I and II. I don't really understand the differences.

    So....since there is no "cure", can it go into remission, or eventually subside with physical therapy and treatment?

    Thanks, Emily

     
    Old 04-29-2006, 04:24 PM   #4
    sharon1030
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    Smile Re: What is wrong with me - CRPS or neuropathy?

    Hi Emily,

    I'm with you on how little is known about RSD. I've had it for 20 years and I haven't seen much of an increase in knowledge AT ALL, especially in the medical community which is where I'd hope to see it first.

    As far as the difference between the two types. My very basic understanding is that type 1 relates to a person with symptoms of RSD with no known nerve injury to one of the major nerves and type 2 relates to a person with injury to a nerve.

    As far as spread or not...it's different for everyone. It might not happen at all in some, it could happen slowly over time or it could happen very quickly. It's all so variable with RSD.

    Hang in there!

    Sharon

    Last edited by sharon1030; 04-29-2006 at 04:25 PM.

     
    Old 04-29-2006, 11:45 PM   #5
    aicirtapo
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    Re: What is wrong with me - CRPS or neuropathy?

    Hi there - Neuropathy is a generic term for pain from nerves. Diabetics get neuropathy pain in their feet as a result I think of poor blood flow over time. It is similar to the burning of RSD but I don't think it spreads nor is there as much sensitivity to touch etc. Also shingles is a form of neuropathy I think caused by the chicken pox virus reactivating itself in later life and attacking the nerve endings. Again the reaction is different with I believe itching, severe rash and pain. Diabetics use Neurontin and Lyrica the same as RSD or CRPS. I am surprised at the drugs you are on. Ibpropen I would not believe strong enough to kill RSD pain, nor do I believe it acts the same way as other drugs that I have heard used. Anti-convulsives like Neurontin, Lyrica, Clonazepam etc seem to decrease the firing of the nerve endings which is causing the pain. Makes sense as that is what they do for epileptics but the nerves they calm are in the brain. They all operate differently so you can take more a little of each if that works better than all of one. Lyrica is the newest and from my experience the most effective, but costly. I take all three in smaller doses. If you are new to this I will tell you from my experience to not be afraid of the drugs. You will not move you limb if you are in severe pain and the muscles will shrink and it will be hard to get them back. RSD or CRPS people must exercise, and stretch a lot to prevent shrinkage and shortening and keep the blood flowing. That is impossible when you are in severe pain. Water is very soothing for many and they find they can really work out when they are in deep water. It decreases the burning and over time has a lasting effect. Ice is bad but cold packs wrapped in a soft cloth may be good - works for me. Try to go to a pain management doctor and get on the right drugs and exercise as much as you can, either through dry land PT if you can handle it or water therapy. Time is important - the longer you wait, the harder it will be and more likely you are to have spreading and long term problems. Some of the people on this board got hit hard right from the get go, some did not get diagnosed properly and the RSD got away on them. When I first got this I read all I could and researched the RSD Associations that have reams of good information and the sites for the hospitals that treat this. Good Luck. Its hard but it is possible to make progress with this terrible disease.
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