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Thread: Reflex Sympathetic Dystrophy and (possibly) Lupus

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    Default Reflex Sympathetic Dystrophy and (possibly) Lupus

    Hi!
    My name is Bethany and I'm (almost) fifteen. I have Reflex Sympathetic Dystrophy, Hyper Mobillity Syndrome, Anemia and a lot of normal kind of diseases (asthma, heart murmur, possibly, hypoglycemia...). I don't know if I have Lupus but I have all of the symptoms. I'm scheduled to see a rhuemotologist at Cleveland Clinic in february. It looks like I might have some kidney problems, I need to get that checked out.

    I am in a wheelchair, the only real movement in my legs are tremors that come and go with a lot of pain. I've had all of these problems ever since I can remember. The mobility ussues didn't start til I was ten, and even then, it got better. When I was twelve, the muscle weakness came back. That's my story in a nutshell. I wrote my entire story with RSD and stuff on my website http://missbethanyann.tripod.com.

    I am getting physical therapy and Baclofen (for the tremors.), I feel like that's stabilizing me but it's not helping as much as I want it to.

    So, do any of you have RSD and Lupus? If so, what treatment are you getting? Is it helping?

    Love,
    Bethany
    Courage doesn't always roar. Sometimes it's just that little voice crying "I will try again."

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Bethany;
    You and Paula Abdul both suffer from RSD. Paula Abdul claims that Enbrel has been a miraculous drug for her!
    RSD is a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems. Some believe that Lupus can cause RSD because Lupus is known to damage and/or cause dysfunction in the CNS. RSD causes irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along the nerves that affect blood vessels and skin. It is also believed that RSD, if follwed by an injury of some type, is caused by triggering an immune response and symptoms associated with inflammation (redness, warmth, swelling): Sounds a bit like Lupus doesn't it??? Like Lupus, RSD is not thought to have a single cause, but rather multiple causes producing similar symptoms.
    Part of the treatment for RSD includes Corticosteroids (drugs that can quickly reduce inflammation and pain). As with many Lupus symptoms, t treatment for RSD focuses on relieving painful symptoms. Here are some of the standard treatment options:
    psychotherapy to relieve stress, anxiety, and depression
    sympathetic nerve blocks
    surgery including sympathectomy (considered controversial)
    spinal cord stimulation
    intrathecal drug pumps

    medications including:
    topical analgesics
    anti-seizure drugs
    antidepressants
    corticosteroids
    opioids

    Please let us know how your visit with the rheumatologist goes, what treatments he/she suggests and what tests will be done!
    I wish you the very best!!

    Peace and Blessings
    Saysusie

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    I went to my doctor today at Cleveland Clinic. He said he wants to admit me into a rehab program. I'll be getting a lot of physical therapy (including aqua therapy) while I'm there. He wants to put in an eupidural spinal pump. He prescribed Lyrica for my pain.

    Has anyone had any success with any of this?

    If any of this stuff works it'll be a huge miracle. I have a ton of muscle weakness (to the point of paralysis) in both legs. Would the pump help with that? My dr. said it might help with the tremors in my hands and feet. The main thing the pump would help with would be the pain.
    I don't want to get my hopes too high, it sounds too good to be true.

    -Bethany
    Courage doesn't always roar. Sometimes it's just that little voice crying "I will try again."

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    Hi, Bethany - I replied under your "bad day" post - just send me a private message if you want to discuss anything about the pump and /or what to an expect from an inpatient rehab program. Will you be going to a center in Ohio or do you know yet?

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