Lupus, rheumatology, mostly insanity.

Discussion in 'Messtafarian' started by messtafarian, Nov 27, 2014.

  1. messtafarian

    messtafarian Member

    Joined:
    Aug 18, 2013
    Messages:
    814
    So I went to the doctor for a checkup to make sure I really didn't have very much wrong with me. A couple things have been bothering me lately but *mostly* what has been bugging me is what has been bothering me all along: NIGHT SWEATS AND HOT FLASHES. Everything else I could handle, but this was just miserable and unending and obviously connected to menopause because I had stopped menstruating.

    But mid-2013 I was also having massive, horrid bleeding issues coinciding with perimenopause and also a goiter that had developed from chronic "hyperthyrodisim." I started to get worried about myself, started going to the doctor and then sort of got more and more worried, because I was diagnosed with hypertension also and of course ongoing iron deficiency anemia.

    So then suddenly I was in this sort of "illness vortex." I tried this hot flash remedy called Amberen with great success but I was told by the manufacturer to STOP PROGESTERONE while taking it.

    So by the beginning of November, I was getting horrible hot flashes again. Also my stomach was not acting right and there was this other, sort of worrisome tremor starting. "Internal weakness." I felt sick to my stomach, hot flashing, dizzy now and this place where I fell on my tailbone a couple years ago starts to ache ( JOINT PAIN???)I scour the internet, getting more and more freaked out. My doctor orders an ANA panel, which is positive, and HIGHLY RECOMMENDS a full GI scope ( upper and lower) to rule out " internal bleeding."

    Now I am losing my mind. LUPUS?? SJOGRENS SYNDROME????WHAT IS IT, WHAT IS IT?

    The positive ANA resulted in an expanded panel that showed a positive "anti-ssb". Okay NOW I had something to go on, and I'm now just *destroying* the internet trying to figure this out. Part of the reason I was on the internet was because my doctor immediately referred me to a rheumatologist which now meant I was going to be going through all this "autoimmunity testing" which is not only expensive but depressing and frightening and I want absolutely nothing to do with it.

    About a week after the positive ssb panel, I felt something happening in my jaw, and then I found a lymph node. I was kind of pushing on it, poking at it, and then i felt something burst inside my jaw. Next thing that happens is suddenly my parotid gland is immense and I can barely chew anything because of the pain when I salivate.

    That lasts one day. Then I have a sore throat, itchy eyes, a runny nose, I am dizzy...etc. And I am reading all this stuff online about how sjogrens syndrome causes multiple organ involvement, and it could blossom into Lupus, unless I had multiple sclerosis or lymphoma or colon cancer or HIV or diabetes. My stomach is wrecked. I am sneezing and coughing, my eyes are watering.

    I AM DYING.

    All right, so now it's day fifteen of my disease. I have restarted progesterone and suddenly...the hot flashes are gone. I have a cold or an allergy or something and my stomach is still bothering me but suddenly it is dawning on me that what people are taking for Lupus is something called Plaquenil, a quinine drug that was developed for Malaria.

    A virus.

    What virus?

    Now I'm searching " anti-ssb and virus".

    I find out I have AIDS.

    NO...wait...

    Now more Sjogrens Syndrome. My teeth are going to fall out. My hair is going to fall out. I have haemolytic anemia.

    Stop, stop, wait...ok...HCV...no...malaria...probably not..coxsackie virus...maybe...hm.

    " Anti-ssb and Epstein-Barr."

    http://www.clinexprheumatol.org/article.asp?a=3532

    Could I have possibly *had* Epstein-Barr when I got my blood drawn? Could I possibly have iron deficiency because I've been bleeding massively for years and eat an iron-minimizing diet plus lots of cheese and coffee? Could my stomach be wrecked because I have a virus and I have now scared myself to death?

    Hm.
     
  2. tara

    tara Member

    Joined:
    Mar 29, 2014
    Messages:
    10,263
    Gender:
    Female
    I AM DYING.
    OMG, SO AM I!!! SO ARE WE ALL!!!! :):
    It does sound like you have got a bit going on. Hope you can find ways to improve.

    I guess you've seen this article of Peat's? http://raypeat.com/articles/articles/im ... ency.shtml
    If you haven't already, you can go to the articles on his site and put lupus into the search box, you'll find he talks about it and related issues in several articles - might help shed some light.

    I used to get night sweats from time to time. I used to think I was just too hot from too many blankets. I hardly ever get them any more. I am approaching menopause.
    The factors that I think have helped are:
    - Eating more altogether through the day, including lots of sugar and adequate protein. Eat sweet supper before bed. Get liver glycogen replenished before the night. Having a small sweet snack by the bed in case I wake up. Sugar for fuel so I don't have to have such high cortisol breaking down tissue for fuel.
    - Some people go for sweet and salty, 'cause salt lowers adrenaline. I salt my food through day and supper, but my wake up snack is just sweet.
    - Keeping my mouth shut at night, so I'm less likely to get into strong hyperventilation during the night.
    - Sleeping with warmer bed clothes and covers - this would have been very counter-intuitive to my previous view of the problem. I now think it helps me conserve fuel through the night, so I don't run out of glycogen so quickly.
    - Progesterone.
     
  3. OP
    messtafarian

    messtafarian Member

    Joined:
    Aug 18, 2013
    Messages:
    814
    Hi there :)

    Progesterone really really helps everything. Aspirin helps and I decided to keep taking it with K even though it might "cause bleeding." I've tried doing things like sugar and salt by the bed but the problem is that I don't want to wake up enough to take it during the night since that can keep me up until the morning.

    Really honestly -- if I did have either cancer or Lupus, I probably wouldn't ask for help with either one of those from a doctor anyway. I remain unconvinced of medicine's ability to really help with much except offering expensive treatments that might "buy" someone a little more time for the price of a ton of money, time and surgical recovery.

    In the long run, all of our prognoses are pretty awful. :)
     
  4. tara

    tara Member

    Joined:
    Mar 29, 2014
    Messages:
    10,263
    Gender:
    Female
    If I turn on lights, or sit up, or even open my eyes when I wake up, I make it harder to get straight back to sleep. So I put a bag of dates and my bottle of progest-E so close at hand that I only have to move my arm to reach them, and don't have to open my eyes. That way I don't disturb myself any more than I would for a normal roll over for comfort. I tried pre-salting the dates, but I couldn't tell that it made a difference for me, so I didn't get round to continuing - it might for some people.
     
  5. OP
    messtafarian

    messtafarian Member

    Joined:
    Aug 18, 2013
    Messages:
    814
    How does Progest-e help you in the middle of the night?
     
  6. tara

    tara Member

    Joined:
    Mar 29, 2014
    Messages:
    10,263
    Gender:
    Female
    For the last year I've been taking a few drops ~5 times a day - one of those in the night if I wake up. I think it's one more factor calming stress responses. The last few weeks I haven't been waking up to snack or use progest-e in the night, probably because I am trying out new drugs - either the drugs themselves, or indirectly because I'm eating more again.
     
  7. OP
    messtafarian

    messtafarian Member

    Joined:
    Aug 18, 2013
    Messages:
    814
    That's interesting. It sits right by my bed but I never take it more than once a day, for fear I would take "too much."

    Time to stop worrying about that, lol.
     
Loading...