intractable pain

Discussion in 'Welcome' started by roro, Jul 22, 2007.

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  1. roro

    roro Well-Known Member

    hiya folks, new here

    i am so sick of this. nothing works. i am on morphine now, every pain med has side effects. i dont have AIDS, they dont know what I have i test for a lot of things but nothign that would cause this much pain. i am sick too, fevers, infections.

    if assisted suicide were legal here, i dont know if i would be here now. but i would be getting better medical care.

    doctors SUCK. few of them understand. my pain dr is cool, he has pain too but most of them are assholes.

    i would never leave my family without the life insurance.

    i go to a lyme disease specialist in aug, but dont know if he can help me.

    I have no friends left, no one wants to be around a sick person. my family is fed up. I am losing hope.
  2. Blackness

    Blackness Guest

    hang in there, see this specialist, he might be able to tell you more about your mystery illness.
  3. Esmeralda

    Esmeralda Well-Known Member

    Keep hoping. My hubby once had a "fever of unknown origin" for a really long time. Every test was negative, he was hospitalized, etc. Then one day he just got better out of nowhere and we still don't know what he had.
  4. gentlelady

    gentlelady Staff Alumni

    Keep trying to find what the problem is medically. If it is lyme disease, it takes awhile to recover from that, but at least you would have a diagnosis.Until that comes there isn't much that can be done to change it. I hope they are able to figure things out soon.
  5. roro

    roro Well-Known Member

    i have been trying for many years to find out what it is. i have seen 50+ different doctors including internists, GP, neuro's, ID's, GI, endo, rheumy, psych the list goes on and on.

    for about 10 years i only had fatigue, joint pain, sore glands, low grade fevers. they said it was hepC, chronic fatigue syndrome, depression.

    then i went on steroids for over a year. i ended up worse and in the hospital with heart failure, meningitis, arthritis brain lesions, and other acute things. so now no one really knows what this is. i went to johns hopkins and they thought it was ALS, myasthenia, MS, etc, i have been tested for many things, but still no diagnosis. some doctors say its lyme disease, some say its just the pain causing it, some say its viral.

    it seems medicine is totally incompetant at dealing with any rare illness. i always thought "if you get sick, you go to the dr and they give you medicine to make you better, and you get better or you have something incurable and you die"

    I never knew that doctors could just say "sorry, we dont know what you have, we give up" and just let someone suffer like this.

    i dont even know if its terminal or not. i sometimes wish it were. if its not treatable it shoudl at least be terminal, or they should give me the right to die.

    I wake up every day in pain, i have pain 24 hours a day. pain meds dont work and they have bad side effects. i often have to make choices like " do i want to be in terrible pain or have intense itching today" or " do i want to feel like I have a knife in my back and its twisting or do I want nausea and a throbbing headache"

    it would be a lot easier to deal with if I knew what it was. i test positive for many different things, so they dont know what is causing this.

    i feel liek i am in hell, and i want to move to oregon.
  6. Esmeralda

    Esmeralda Well-Known Member

    I am so sorry you are in so much pain. Could it possibly be Lupus? Have you been tested to see if you are allergic to wheat gluten? I know those conditions can cause some really bizarre symptoms. Also, have you done research on your own online or at the library? I know from experience that doctors can be total idiots when it comes to a right diagnosis.
  7. roro

    roro Well-Known Member

    thanks peanut.

    I have been on the internet doing research for the past 20 years trying to figure it out. i have to admit it really does sound like lyme disease, possibly with several co-infections.

    the doctors basically have told me to go home, accept it, and make arrangemnets.

    a couple weeks ago, I had thrush so bad that it spread to several areas of my body, all the folds of skin, etc. i dont mean to sound gross but i had areas of skin that were cracked and bleeding. it took about a week after taking the diflucan to clear it up. I feel like I am rotting away from the outside, this is a horrible way to die. hopefully my heart will give out before that.

    i go to a lyme specialist aug 20th hopefully he can help. i have been on a low-carb diet, so that is gluten free. i am also going to the GI in august, i will ask about the celiac. i have been tested for lupus, and at the time i was asymptomatic and it was borderline. i dont think i could take steroids anymore anyway because of the infections. maybe after the infections are treated it will go away or I can take them then.
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