And It's About Time There Was Some Support For Cushing's!
I am still in that oh so frustrating stage where I feel like i am in good "tune" with what is, and isn't, going on in my body, but the doctors don't seem to want to pursue it.
I have for years now been gradually declining physically. At the age of 35, I've never been in great shape during my life, but I've been active enough, and always had a bright outlook, positive energy and was involved in certain athletic endeavors, including recreational sports and football officiating. Though an abundance of those efforts left me sometimes fatigued and/or stiff/sore for a few days, I generally tolerated activity well.
Lately, I've gained weight very easily (40 lbs over 3 months in the latest period), but have managed to lose weight on occasion too (though this is becoming harder). More significantly, I feel VERY tired and run down all the time, and my body takes much longer to "bounce back" from even simple things than it once did. On top of this, my anxiety levels seem to have gravitated higher, and are now harder to "reign in", despite therapy and medication, and I generally feel more anxious and pessimistic about things and life in general than I once did. Now that my muscle fatigue (especially in my lower back, abs, hamstrings, glutes, shoulders and upper arms) has grown worse and worse, life just is more work, less fun, and overall less enjoyable than it once was.
I have always had health anxiety, and have mini-episodes where things "aren't right" with my body, and cause me great concern. It is in conjunction with these episodes that my most severe bouts with fatigue, anxiety, muscle weakness/discomfort, depression, weight changes and the emergence of pink/purple stretch marks on my belly, under my arms, and now around my side onto my butt/thighs has been noticed. I am CERTAIN that I trigger far higher than normal amounts of cortisol (or maybe it comes first, who knows), and can feel my body "changing" in ways far more comprehensive than just the effect of severe anxiety. To wit, I have now had 2 24 hour UFC test results, and both came back elevated - one at 94 and one at 98. Of course, since I don't have an round, red face, wasting muscles (to an alarming degree anyway), a pronounced hump (though I see one when I look at myself), or some of the other "classic" features, I get very little concern from the docs. Moreover, because I seem to be able to lose the weight if I focus on doing so, they are not willing to focus on cortisol as the reason I feel bad. In some respects, when I read the stories of full blown Cushings patients, I can understand why. Mine is not a disabling case - yet.
Still, I can feel the tell-tale signs more clearly now, especially an "exhaustion" period where I come down with multiple strange infections (this time it was strep from out of nowhere - last time it was back to back cases of pink eye), and become cold, lethargic, and feel muscle/joint pain and stiffness (II call these my "down" symptoms). When I feel like my cortisol is going in a bad place, I begin to feel very mentally "sharp", high energy, like I can beat the world, edgy, tense, anxious and of course, start gaining weight. I believe my heart rate and blood pressure start to ramp up too, but I don't always check. This is when I know I am no more than 2-3 weeks at most from beginning to feel the intense anxiety and gradual weakening of muscles, in the midsection first, then legs and upper arms.
I am hoping one of these tests comes back "high enough" to at least warrant more focus. I really don't know what it would take, and if I would even want, to move out of this "tweener" group I seem to be stuck in - high enough generally to be abnormal (and unfortunately for me FEEL IT), but not so high as to be severe and actionable. Anyone with thoughts or a similar story is WELCOME to email me at xxyyzz123@charter.net, and give me your thoughts.
At this point, I just don't know how hard, if at all, to pursue this. I can function, and at times feel "OK", but the majority of the time, I am a 35 year old male struggling to keep up with my family, and feeling like I am 65. This part of life I'd like to get control over.
As with anything else, though, life's challenges are to be met without self-pity and/or a "whoa is me" attitude. I am up to the task. Finding this board, and hearing about others who feel similarly, helps greatly.
J
