I wish I had found your story 6 months ago when I was diagnosed [2006]. I had similar frustrations with knowing what was wrong but not being able to get doctors to support with tests. In my case,  I asked for a cortisol test a year before the stimulation test was done (They did do a baseline and the cortisol dropped instead of rising due to stimulation.). The cortisol test alone did not show the problem because I did make a small amount of cortisol. Like you, I had been sick a lot, had been passing out whenever I vomited from viruses, and suffering worsening hypoglycemia as an insulin dependent juvenile diabetic. I was hypoglycemic many nights and at various and unpredictable times throughout each day (probably did not help the poor wiped out adrenal gland). I had called my clinic for help from my endocrinologist but my call was not returned. By that time, I gave up trying to get help because the exhaustion consumed my days; all I could do was care for my horses and what work could not be put off. I got to the point where I had to summon all my strength to go for a ride to exercise a horse, but it would be a week before I could muster to do it again. I was panicked at getting further and further behind in work, I felt bad for the animals because I could not give them time and attention they need, and my husband was convinced I no longer loved him or felt him attractive. I slept a LOT. I finally realized I was going to slowly die if I did nothing so I emailed my doctor, asking him again about cortisol. This time, he gave me an appointment a month or so later and asked me to go in and have the stimulation test done before I saw him.

However, getting help figuring out how to live with the problem was impossible even here outside of Boston. I found no support groups except one that turned out to be one person who was herself too sick to do more than return one call. To complicate things, I got a urinary tract strep infection from which it took me about 6 weeks to recover, followed by another urinary tract infection. I did not start really feeling better until I found a local acupuncturist who is willing to help me as best she can.

The last two months [September 2006], I have begun to do pretty well (except for the nasty virus I have right now). I have the energy to ride again and even ride hard, although I am breathing hard because I am not yet in shape for eventing  (cross country jumping). There are still ongoing issues with which you may have dealt or may in fact be still dealing with yourself. First, I am still fairly fragile. It does not take much to knock apart my newfound strength and energy (like the simple head cold that has me weak and shaky and unable to function whereas friends with the same virus are doing OK). Secondly, I have so many backed up projects and jobs that it is almost overwhelming due to having lost so much work time to sleep and fatigue. It is going to take a long time to claw my way out. Thirdly, there are all sorts of emotional issues after living with fatigue for so many years. I do not know how to pace myself when feeling good because I have for so long had to cram in as much as I could when I did feel up to it. I have to learn again to not be anxious when tiredness does hit, and to enjoy normal work. And of course, to not feel so down on myself for what I cannot yet do. I really do understand how you wrote that your depression was due to physical issues; they are so linked.


Deborah

 Last changed: February 07, 2010