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Thread: some questions--am i crazy??

  1. #1
    Join Date
    Nov 2003
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    Default some questions--am i crazy??

    hello everyone,

    i'm a 23 year old grad student and for the past semester i've been bouncing back and forth between assorted doctors. i started out with severe headaches and ended up in the emergency room several times until they just admitted me for tests. everything came back pretty much fine, and they couldn't figure it out, so they just assumed i was under stress at school and said i was having migraines. none of the medications, except imitrex, which i just recently got, have worked at all, other than morphine... the headaches have gotten better, but then i started having this very strange tingling sensation accompanied with numbness to the point of falling when walking, and very bad night sweats with fever, so i got sent to a neurologist. fortunately, he was wonderful and very thorough. he ran a ton of blood work, and my ANA and sed rates came back high, so he has referred me to a rhematologist and tentatively diagnosed me with lupus. I've had the weird butterfly rash, along with extreme cold in my hands and feet, they turn blue or white all the time, and my joints-esp. my knees, and swollen and stiff. i'm tired all day long, and sometimes it's painful just to get out of bed. i started to think i was just going crazy until the neurologist suggested it's something autoimmune.
    about 5 years ago i was diagnosed with fibromyalgia; i was working at a camp in NH and began showing signs of something liek lyme disease; fever, fatigue, swollen joints etc, but they couldn't find anything and the fibromyalgia seemed like a diagnosis based on lack of anything else, though i did meet the guidelines for tender points etc. i never thought much of it, and when i felt better after several months, assumed it was just a virus. so, 5 years later, here i am, thinking i am going crazy....
    i know you read a ton of 'i'm new' posts every day, so sorry about this. i'm trying to not get too worried, but at the same time i know this is a really serious illness. i've looked up some initial information about it, tho the internet can be kind of overwhelming, and am now worried about the treatments. last year i had spinal surgery for several ruptured discs, and so i am now basically immune to pain medications and nsaids except in very high doses, as i lived on them for almost a year. i cannot take vioxx or similar drugs because of a sulfa allergy, and the other drugs in that category (bextra etc) cause horrible reactions as well. I've had asthma since i was little, and thus, a number of horrible run-ins with prednisone, so that wouldn't be an option either. these are all things that the neurologist suggested the next dr. might offer to control my symptoms. so i guess i'm thinking, what else can i do now?
    i am sincerely hoping that this is just all some very strange virus that will eventually go away.
    i hope you're all feeling well today, and thanks for listening

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Alli;
    I am sorry that it took me so long to get back to you I was out of town for some much needed rest!
    I am not a doctor and cannot diagnose you. However, your symptoms sound like: SLE, Raynaud's Syndrome, and Fibromyalgia.
    SLE: The symptoms of SLE can differ with each person and the most common ones are extreme fatigue, swollen joints, unexplained fevers, and skin rashes. Other symptoms include chest pain, Lupus headaches (much like severe migraines),hair loss, sensitivity to the sun, anemia, swelling in legs or around the eyes and swollen glands.

    Raynaud's Syndrome: Almost like frostbite without extreme weather. occurs mostly in fingers and toes and can last for minutes or hours. The affected areas are very, very cold and turn red, white and blue. The fingers and toes will at first turn very pale and then blue and is preceded or followed by painful redness. 20% - 40% of all SLE patients suffer from Raynaud's.

    Fibromyalgia: The characteristics of this condition include widespread pain in the muscles and joints, extreme fatigue and generalized weakness, non-restful sleep, severe headaches (You and I have a double whammy with fatigue, weakness and severe headaches with SLE and FM). Other symptoms include mood changes, difficulty thinking or concentrating, irritable bowel syndrome, tender points (as you mentioned) and urinary urgency. FM is a common symptom of SLE and rheumatoid arthritis.

    Treatments: There are other hydrochloroquines that can be used other than Plaquenil. It is just the most successful and most common one used in the U.S.
    Also, ask your doctor about glucocorticoids (for arthritic pain) such as triamcinolone (Artistopan), methylprednisolone sodium succinate(Solumedrol); Immunosuppressives (Methotrexate (Rheumatrex), azathiprine (Imuran).
    I would suggest that you be very thorough with your rheumatologist and make sure that he explaines your symptoms and medications to you in an understandable way. Go to the "Medication" forum in this web-site for more information about treatments!!

    SLE is known to go into remission and Fibromyalgia is not a life-threatening disease, it is a condition!!!
    Best of Luck to you, keep us advised.
    You are not alone!!!

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