Thursday, July 9, 2009

CCS - constantly crappy syndrome

So after a couple more doctor's appointment's Paul and I have appropriately named what I'm going through CCS, for Constantly Crappy Syndrome, since the doctor's don't have a clue as to what to call it. I need a name and it sounds good.

All the test results came back. I don't have an auto-immune disease. The ANA test came back only borderline positive and the lack of inflamatory tissue in my joints is further proof I don't have an auto-immune disease. So that means absolutely no lupus. Yay! I don't have Lyme disease. I don't have Hepatitis C. I don't have Rheumatoid Arthritis. My kidney and liver funtions are great and my thyroid levels are perfect. Iron levels are great, no anemia. I'm (according to the tests) fit as a fiddle. Execpt for that pesky joint pain, fatigue, nausea etc... :)

Paul (of whom I love very much) “found a clue” and I discussed it with my doctor. Apparently serotonin levels have a major impact with fibromyalgia and the lower the serotonin levels the more pain you experience, the more fatigued you are due to lack of “good” sleep, etc… I’ve had these symptoms (in much lower quantities) most of my life which got worse as I got older. Some of these were very prominent right before I was diagnosed with hypothyroidism, but when I went on the anti-depressants (before I was diagnosed with hypothyroidism) the symptoms lessened a lot. I would occasionally have joint pain or fatigue, or temperature fluctuations or nausea, but it was rare and mild – usually only after very high stress periods.

Once I went down to a 5 mg dosage preparing to get off the antidepressents, I started feeling the symptoms again. Going off them entirely they came back with a vengeance (thought it was the withdrawal symptoms from the lexapro, but now I’m wondering if it wasn’t the beginnings of CCS). Then there was the period with the birth control and the unregulated thyroid medication, which I attributed the symptoms to the thyroid, but since that’s been ruled out the symptoms have just been getting worse. So the thought was this had everything to do with my low serotonin levels.

After discussing it with my doctor I've gone back on the antidepressants. Really I have nothing to lose at this point. Apparently they change the brain area that's very close to the "pain regulator". The only real idea the doctor came up with is that the area in my brain that senses pain is stuck on 11 on the 1-10 scale. If it works, I'll chose taking a pill for the rest of my life over CCS. I've been on them for four days and the pain is definitly much less - say a 2-4 on a scale of 1-10 where as before I was stuck on 8-10. I'm still having some pain and swelling in my joints, but my energy level has skyrocked and I feel like me again. There's some weird adjustments while my brain restructure (extreme sensitivity to noise/sound, weird spazziness periods, some minor headaches and irritability). They're minor issues and fleeting. Issues don't last for more than an hour or so when they pop up.

I was able to go on a bike ride (up something, not just flat), go out after 8 pm, go out and have a drink, walk around when we went up to Alpental, go on a chill lake stroll, etc... I feel better. Still in the dark as to what's going on, but at least I feel better.

As a side note:
You must read this. There's a reason Fat Cyclist is on my frequently read list. This post is beyond beautiful. Part of the frustration of this crap is the longer it goes on, the more chronic the nature, the more I felt my personality and spark worn away, like chinese water torture to my personality - slow, not really harmful, but it'll get to a point where it'll drive you nuts. To think that people go through so much more pain, debilitating terminal illnesses, that these amazing beautiful people inspire hope within me and touches me.

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