Thirsty and have to pee a lot? Diabetes Insipidus

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Jun 2, 2003.

  1. klutzo

    klutzo New Member

    I think I may have stumbled upon an explanation for why so many of us with Fibro are thirsty all the time and peeing all the time, yet we do not have sugar diabetes, so we are told it is "just Fibromyalgia and you'll have to live with it".
    We know from research that 100% of Fibro patients have a damaged H-P-A axis (Hypothalmic-Pituitary-Adrenal). Some reserchers have said that FMS/CFS causes brain damage. Some of us, like me, have had actual head injuries.
    Well, any of those things can cause a rare condition called Neurogenic diabetes insipidus. This has nothing to do with regular diabetes, and is only called that because of the symptoms the two have in common, ie. constant thirst, frequent urination, and night time urination.
    There are four types of diabetes insipidus, and blood and urine tests can be performed to determine which type we have, but I would bet on the Neurogenic type, because of the H-P-A axis problem we have.
    Diabetes Insipidus is caused by a lack of ADH (anti-diuretic hormone), produced by the hypothalamus,which results in your body acting like it is on diuretics all the time.
    The good news is , there is a treatment . It is a drug called Vasopressin, which is taken in the form of a nasal spray right before bedtime, and can prevent us from waking up to pee at night! It also can improve memory dramatically. The side effects listed are pretty scary though, and it is contra-indicated for those with high blood pressure like me.
    I am going to ask my doctor about this, but meanwhile, I am wondering, do any of you already have this diagnosis? Anyone already taking vasopressin?

    [This Message was Edited on 06/02/2003]
    [This Message was Edited on 06/02/2003]
  2. tansy

    tansy New Member

    so many of us benefit from increasing our water intake and just as importantly using sea salt.



  3. klutzo

    klutzo New Member

    I sure didn't want yet another diagnosis to add to my resume!
    However, I would like to add that the fasting 8 am blood test does not always pick up low adrenal functioning; at least it didn't in my case.
    My blood test was 18, which should be OK, but I really have all the symptoms, and sure enough the more sensitive ASI saliva test showed me to be in "Stage 3 adrenal failure".
    So, like you always say, treat the symptoms not the test result.

    P.S. Madwolf - are you familiar with Dr. Russell Roby? He apparently advocates the exact same treatment my new holistic doc is doing with Progesterone drops for FMS. He has a website. All I can say, is 30 mins. after my first dose, I felt normal again and this has continued. I am keeping my fingers crossed.
  4. klutzo

    klutzo New Member

    That was my question exactly, but I think it may be a sensitivity to testosterone in the case of men (just guessing).
    At any rate, Dr. Roby welcomes e-mails, and he really does answer them within 24 hrs. just like his website says. I'm sure he'd be glad to explain any questions you have.
    Please post and let us know what he says.
    Also curious about male Fibro,
  5. klutzo

    klutzo New Member

    I am bumping this so Madwolf sees it. I am very curious too, as to what could be causing your problem.
    It was my understanding from my reading that the reason for the chemical sensitivities is the low level of cortisol. Cortef should improve that, not make it worse.
  6. babyblues68

    babyblues68 New Member

    This is all so interesting for me. I've been tested for diabetes a lot...once it came back and my doctor said borderline. I'm constately asking him about this since my blood test have come back in normal range and are just fine now. The thurst and frequent urination has been with me since my teen years (I'm 35.) I have it so bad it's noticable to others.

    This is something I'll ask my dotor about.

  7. Achy-shaky

    Achy-shaky New Member

    Very interesting. My brother who does not have FM has been dx with DI but not sure what kind, so I've wondered if I have it too but tests were always negative. What I find strange is that he doesn't drink any more water than I do which is a lot (about 96 oz/day) & he doesn't take any meds for it as his doctor didn't think it was serious enough which sounds like there may be different degrees of the disease.
  8. j-bearmama

    j-bearmama New Member

    I work night shift.
    I go to SLEEP at 4:30 AM and get up at 10-10:30 am?
    I work from 8pm to 2:30am.
    SO when should I fast and when should I see dr?

    last time I went in for blood work I SUSPECTED the numbers would be skewed because the dr said I had to come in within and hour of my normal "wake time". but the ONLY avail able appointments were from 9-10.
    I explained that I work night shift.

    WHY do they "recomend stuff" and ignore the obvious.

    I could go with NO drinks for 3 days and STILL pee every hour.
    I have figured ( and it may be) kidney, bladder UTI damage that is permanent from when i was in 10th grade and has severe UTI that really messed up my whole urinatry system.
    the problems with UTI continues through my first year of college. however... when I moved and got married, no more UTI.
    If I suspect it. I drink extra, especially cranberry juice.
    never had to be medicated since college.
    interestingly enough. from 9th grade through college, I had CONSTANT recurrent UTI, swollen lymph glands in neck. had TONS of anti biotics and NEVER got better.

    glads and uti improved when I moved. YET, 4 months after I moved here, we were in severe car wreck and all hell broke loose in my body!
    within a year, I was dx with FM.

    coincidence? I don't think so!

    I WANT to get to the bottom of this!
    I don't want my symptoms merely treated, I want to know what causes what, so we can irradicate it all together.

    how come science is more concerned about creating sheep in an unGodly way, than they are about OUR quality of life?
    someone's priorities are TOTALLY out of whack!

    I'll get off my soapbox now. :)