• Anonymous
      September 26, 2009 at 1:06 am

      I have always had fibromyalgia type pain. it would last for one day and go away. I have had arthritis type pain and it would do the same. conveniently, but I assure you not psychosematicly, right after my possitive ANA I have been horribly enflamed with pain that I call a migrain all over my body. my GP gave me bactrim for my swollen lymph node. so for the past three weeks I have not been able to shake this pain. its starts in my back and if I dont start taking narcs right away it will spead all over. pain wakes me up in the morning and only allows me to sleep no more than 5 or 6 hours if I am lucky. the joint pain and stiffnes does not go away until my pain meds kick in. then comes back when the meds wear off. the other night I kept waking up with sweats and chills and fever.

      so I come to find out that sulfa meds (bactrim) are high on the list for agrovating lupus. or onseting it for the first time

      they tried to give it to me again when I came in with a kidney infection. even though i told them I am intolerant.

      then they tried to give me minocycline which causes drug induced lupus so i said lets just have something from the penicillin family.

      I cant get into see a rheumy but i am seeing an internist. he said lupus does not usually have a purely neurological onset like I have had all these years. and it is highly improbable that one would have 2 negative ANAs.

      95% of lupus patients have possitive ANAs.

      does pain like this happen in CIDP? I think its time to commit to an anticonvulsiant for pain relief cuz narcotics arent working and they arent even fun when youre actually taking them for pain. lol.

    • Anonymous
      September 26, 2009 at 3:20 pm

      I can’t remember…

      What drugs are you taking FOR the disease? Are you on any immunosuppressants?

      Honestly, the pain relief pills are just a band-aid until you get the disease under control.


    • September 26, 2009 at 4:32 pm

      Hi Tara,
      My heart is aching for you.
      I have no medical background and maybe I shouldn’t even say what is on my mind, but here goes. Have you checked any of the varieties of Lymphoma.
      The night sweats, chills and fevers plus the swollen lymph nodes are indicative of something serious and so is your suffering.
      I am praying for all the forces in the universe to help you find the right doctor no matter how many you have to visit in order to get the right diagnosis and treatment.
      Sometimes a disease is so rare or presents in such a way that it eludes doctors and then a patient suffers for years.
      God Bless You. You are on my mind.

    • Anonymous
      September 26, 2009 at 9:51 pm

      yeah I am right on that lymph node. I had a biopsy scheduled for last week but my car broke down so it has been rescheduled for next week.

      I had swollen hands and feet and kidney pain today so I went to the er so make sure things are functioning properly. the doctor practically accused me of drug seeking in so many words. I dont understand why you are here he said. i told him I had my pain under control right now with vicodin and he said why didnt you tell the nurse that. he said I would feel much better if you had been honest about that.

      I said she didnt ask and I am not here for your stupid pain meds I wont to check my kidney functions please.

      he said well I can give you toradol for the pain

      I said isnt toradol dangerous to kidneys

      he your right I can give you morphine

      I siad I dont want your pain control I just want to know if my kidneys are functioning properly and I wouldnt want to loose credibility.

      anyways the long and the short is I still have the kidney infection so he gave me another antibiotic