Discussion in 'Fibromyalgia Main Forum' started by justlooking, Oct 7, 2008.

  1. justlooking

    justlooking New Member

    In another post you mentioned you have Addison's. What were your symptoms? How did you get diagnosed?

    It's one of the things I may possibly have. My Drs have two possible diseases which despite testing, keep eluding us.

    I have high Calcium, Low blood sugar, all of the FM symptoms and all of the CFS/ME symptoms, along with daily chronic headaches and migraines. I have added some new symptoms, like shakiness, weakness, dizziness, seeing a blue light in my eye, pain behind my right eye, vision distrubances, heart palpitations and more. Anyway I need to have further testing to determine what is causing the high calcium. He believes it is either a tumor in an endocrine system organ (hyperparathyroid or pituitary) or addison's disease.

    Thank you in advance for any info you can provide.

    FYI I have had a diagnosis of CFS and FM and chronic headache disorder for many years. headache disorder was diagnosed first in 1995, FM diagnosed about 3 years later, and CFS a year or so after that. [This Message was Edited on 10/07/2008]
  2. spacee

    spacee Member

    Where are you Grammy???

  3. justlooking

    justlooking New Member

    Take your time, in the meantime I will look at the sites you provided. I have been to many sites about it and they all have the standard stuff, which is helpful to a point.

    It always helps to hear a personal story about symptoms. Kind of like with FM or CFS/ME. You can read the symptoms on a site but it really takes hearing how people are affected by the symptoms or the severity and also how they ultimately knew they were barking up the right tree.

    I just need a little perspective I guess and feel like some with Addisons can give me some. I was thinking about looking for a Addisons support group to read their posts too, any ideas?


    PS one of the most important things I am looking for is how did you "know" you had Addisons, in terms of what was the deciding factor for the Drs on tests. It seems there isn't really an Addisons test but more of a clinical diagnosis based on history and a combination of abnormal tests... kind of like Lupus, there isn't necessarily a definitive test so I am curious at to what was the main test/symptom factors. thanks. [This Message was Edited on 10/08/2008]
  4. justlooking

    justlooking New Member

    Now you've gone and made me hungry. Do you live anywhere close to San Diego, because I'm thinking I'm coming to breakfast tomorrow so set an extra place LOL

    Thanks again for all of the info. I am going to read all of your post and suggested sites, when my brain is working again. One of my most difficult issues right now is these darn headaches and they fry my brain!! Can't think or read until my head clears.

    On the support group, I meant an online group, like Prohealth, only for Addisons. I know 90% of the time my posts don't make sense to anyone else LOL
    Sometimes I come back a day after writing a post and can't understand what the heck I meant....

    You are right about the test, it's the ACTH stimulation test. The other thing the Dr is considering is Pituitary or Parathyroid related. I am going to see him in a couple of weeks and start the testing.

    Thank you again.
  5. Wolverine

    Wolverine Member

    Interesting info as i've recently joined you in the ranks of adrenal insufficiency.

    I'm having a really hard time with mine at the moment as im just starting off. See my post about AI, and new one 'to those on cortisol'.

    Protein in the morn without carb has always helped my general morning fatigue to be better, until of course my hypoglycemia went out of control with the worsening of the AI.

    Best of luck JL! I'd get that ACTH stim done asap. If you have to.. have the same test as me too - Insulin Tolerance test. Thats what got me my diagnosis (just this monday been).
  6. justlooking

    justlooking New Member

    I thank you for your warnings. I don't think you are trying to give out medical advice (playing internet Dr), but making sure we are careful based on your knowledge and experience.

    I find you posts informative, thoughtful, caring and careful.
    Thank you!