Patients push limits for clues to chronic fatigue syndrome - STAT

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Hallelujah. Serious research is finally being done on an illness that turns it’s sufferers into ghosts of their former selves. Most days we are pale, lackluster versions of who we once were. A low dose of Adderall has helped with my fatigue, mental fog, mood, and unexpectedly with my pain. I mentioned to my docs that I felt my pain lessened with the med and I asked them if they were aware of this benefit and they were not. Certain of my feelings, I did some research. I read that amphetamines were experimented with during WWII to treat pain in injured soldiers with some success. One has to be careful to avoid large doses which would cause really unpleasant, unsafe side effects and only take as prescribed by a doctor. Having to maneuver through three decades of this illness, I’ve formed some questions and opinions. I’ve come to believe that it runs in families. It does in mine. Also, my magnesium levels are often below normal in spite of a daily supplement. Magnesium is important to muscle function. When I am at my worst and so weak, just getting up to walk to the bathroom causes me to break into a soaking, cold sweat. Sometimes, I’m sure it’s associated with adrenal issues. Could the extreme anxiety of trauma, or prolonged physical or emotional anxiety deplete or heighten the production or effectiveness of certain hormones? Have we become hypersensitive to internal and external stimulus? So much so that our slightest reaction to it depletes us? It boggles my mind that I am always in some level of body wide pain and that the level of pain fluctuates with kind of physical and emotional stimulus I experience. Sometimes, a reaction is immediate, like when someone presses fingers onto my arm or leg. Sometimes, it’s delayed or cumulative, in a few hours to a day after doing a chore or experiencing stress. Conversely, I experience pain relief and energy boost when I’m exposed to very intense positive emotions, like when I’m with my young grandsons. At times I wonder if there could be a connection with surgeries. Perhaps, one of those organs we are told we don’t absolutely need, like tonsils, gallbladder or appendix, turns out to be more important than we thought. I think the best way to begin a study is to get as many sufferers as humanly possible to list their own experiences along with medical and personal histories. Then try to cross match and pin point similarities. We weren’t born feeling chronic fatigue or fibromyalgia. Something, along the way either caused it or flipped a genetic switch. Good luck researchers. My prayers are with you.