How many have been tested for Addisons?

Discussion in 'Fibromyalgia Main Forum' started by alaska3355, Dec 13, 2005.

  1. alaska3355

    alaska3355 New Member

    I'm looking into it since the symptoms are so similar to CFIDS.
    From what I've read, it can be caused by a viral infection (among other things), and my son's CFIDS started with a viral infection. He has lost weight, nausea a lot of the time, and tends to want to be reclusive (he never used to be that way.)
    I'll let you all know what we find out. Thanks... Terri
  2. Fudge43

    Fudge43 New Member

    Hello Alaska3355 .. I went through a very long morning of an insulin resistance test that was supposed to confirm a tie to Addisons .. it was negative .. but the test was hard on me .. and my "tan" still stayed all winter to the next year .. skin pigmentation is a marker ..
    I hope they find out what is wrong quickly .. I know the stress is very hard.
    Good Luck !
    Fudge : )
  3. alaska3355

    alaska3355 New Member

  4. karatelady52

    karatelady52 New Member

    I remember reading about this on another board so after some hunting, I found the article:
    I have those spots on the left side of my face, left side of neck and in various spots down left side of body/legs, lots on hands and arms.

    At first I too thought I had got a tan, but the spots were irregularly shaped, yes really like I had tanned but only in certain spots with a dirty sweaty neck. My kids were always telling me to wash my neck, it was their turn to be the parent. Eventually these "spots" got larger and darker and darker.

    At first I thought they were just liver spots, so i tried to bleach them, didn't work. Tried to scrub them off with a pad for scrubbing pots, tried to do it with Vim. No luck, so said well I might as well to learn to live with them.

    Once the spots started to get really large, old doc was worried about cancer and said to stay out of sun and to keep an eye on them.

    Then when I found my new LLMD (lyme literate MD) Dr. M, he said it was the lyme. Once on abx, the darkness lessened quite a bit (ones on my face and neck), but still visible. The spots on my arms and legs faded away to barely visible. Have been off abx for almost a year, and these strange spots are back again.

    I am starting abx again around mid-May, so will be anxious to see what happens. I have found the sun, even in winter, to make them much worse.

  5. kylesmom

    kylesmom New Member

    Unfortunately, it's been several years and I don't remember the details. It seems like they were looking at cortisol levels...? My first test showed my levels to be below normal and my second test was in the low but normal range. We tried six weeks of hydrocortisone (I think) 5 mg every other day. It did nothing, and I stopped taking it. I had all the symptoms except the skin discoloration. I haven't been retested.

    A lot of us believe our CFIDS began with a virus or an emotional stressor, or both! Good luck helping your son. I hope you are able to find something that helps him.
  6. sdown

    sdown New Member

    I was tested for Addison's disease (adrenal gland exhaustion). I have the disease. I am on 25 mg of cortef (that's steroid medication) a day and DHEA. The downside of taking the cortef is for me anyway Im more susceptible to infections. It does say that on the pharmaceutical warning with the infection. Im in Canada so I dont know if its the same warning in the US. But my energy is better since I started taking the cortef 4 years ago. The doctor said I will be on it for life. They might be able to reduce the amount a little bit down the road. Its not something you can go off automatically. You have to be very careful to go gradually off it with medical supervision. Doctor also put me on gingko biloba and B12 for my pernicious anemia. Do he get tested for different viruses? They tested me for all kinds. I had the HHV6 virus. They also tested my sed rate (circulation). I had a very poor sed rate and I was on heparin (blood thinners for 18 months. The doc said the poor circulation was caused by mercury poisoning so I had my mercury fillings removed. Your right having Addison's disease causes Chronic Fatigue. My worst time of day is in the morning. I might get up at 0800 have breakfast stay up watch tv for 1 hr then go back to bed till 1130 am. I think most people with adrenal problems have it worst in the morning. Anyways the doctor was very good at getting the lab to produce a chart to show me when my adrenals performed the worst and the best. Weight loss can be a sign of adrenal problems. I didnt have nausea. Good luck to you and your son!
  7. sdown

    sdown New Member

    Forgot to add. Yes another symptom of adrenal gland problems is pigmentation. I look like I have a tan year round.
  8. trinity3

    trinity3 New Member

    there are alot of us with CFIDS and FIBRO that have adrenal fatigue... not necessarily full blown addison's (which is where the adrenals completely do not function at all anymore) but adrenal fatigue is a condition where the adrenals are not completely dead, but not functioning nearly enough to allow us to have normal functioning....

    it occurs, from what i understand, because the adrenals are the glands that respond to stressors on the body, with the stress hormones adrenaline and cortisol...but they are not meant to have to deal with stressors everyday all day for years at a time!! and so they get worn out and only function at a low level..... cortisol is needed for daily life functioning...

    my cortisol levels have been very low for the last couple of years... i have been sick for 6 years.... so it seems that after a few years of being so ill, my adrenals finally got worn out...

    most doctors dont really bother testing for adrenal fatigue... they are just interested in testing for the biggie 'addison's disease' where there is NO functioning at all as that condition is life threatening if not treated...

    but the adrenal fatigue can be quite disabling... and if you do have it, it does make you feel better when you take steroids... i take a low dose every day and it gives me the little bit of functioning i do have.... then there is the fibro....

    they sort of feed off of each other because the fibro pain just keeps stressing the body and taxing the already weak adrenals, and the weak adrenals make you feel sick and trigger the flares of fibro pain....

    its very difficult to find a doctor that will understand and even believe this.... i havent found one yet... but it does sound like the 'fibro and fatigue centers' accross the country do understand it.... so i will hopefully be beginning treatment there soon... in about 4 months after my wedding....

  9. alaska3355

    alaska3355 New Member

    What do you do for your adrenal fatigue? I'm guessing that my son won't test positive for Addison's (he has no skin discoloration that I know of) so they won't do anything for him. I guess I'm a little disappointed in the "regular medical establishment" as you can tell. We have him on lots of supplements: selenium, CoQ10, ALA, garlic, vit.C, boron, lithium, calmag and zinc, and a few others I can't remember right now. I'm trying some Siberian ginseng with him- haven't noticed anything different yet. Thanks for your response!
  10. alaska3355

    alaska3355 New Member

    Trinity3- congrats on your upcoming wedding! Terri
  11. alaska3355

    alaska3355 New Member

    Thanks for posting. Your problems don't sound exactly like my son's, so maybe he doesn't have Addison's. It's just something I thought hadn't been checked, and the more I learn about, the more things there are to check. My son goes to bed between 9 and 10 at night, sleeps 11 or 12 hours, then he stays up all day without a problem. He has no skin discolorations (that I know of) but I mentioned that his preliminary blood test showed high triglycerides. I was really's not a big problem for my husband or me, so it must be his system. I'm making him drink lots of water now (he wasn't doing it) and we'll get some results soon on his 24 hour urine collection.
    Thanks again- Alaska
  12. alaska3355

    alaska3355 New Member

  13. alaska3355

    alaska3355 New Member

    That was a good article. We haven't found out anything yet, except that he has high 18. So we will keep searching. Thanks for the response.

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