in reply to @j77 I share your frustration with not being able to be diagnosed, as my experience in trying to get some kind if definitive diagnosis after losing 40 percent of my body weight, having chronic diarrhea, rashes, enormous pain etc., has been exhausting. I have finally found some resolve in the fact that perhaps I have some rare disease that cannot be identified presently. I accept this. NORD is a very good organization that provides an abundance of support to those who might have a "rare" disease, and tells me that it can take up to 5 years to get some kind of diagnosis. It is terribly frustrating. In fact, I saw a PA yesterday because my mouth is covered with blisters and anything I eat causes a terrible burning sensation. I look like I got botox injections on my lips. LOL. She said it was caused by stress, no surprise. And while I became quite tearful during the visit, explaining my frustration with doctors repeating all the same tests, getting the same results and things of that nature, she asked me, "are you expecting too much from your doctor?" I respond that I just want to know what is wrong with me, what all these tests mean that show up as "abnormal" and what they mean in terms of my overall health situation. She agreed with me that yes, the tests are abnormal, but that whatever is going on with me, and why I look like a holocaust victim (a former "friend" said this to me) is yet to be determined.
I have not given up. However, I have found ways to channel my frustration and I challenge myself everyday to do something different to "reframe" my thought process. My art is my opiate. Everyone has their own. What is yours? For many it is religion, or exercise or like me, art. I am now in the process of filling in the letters of a quote that I have written on my living room wall: "Her whole life changed the day she decided to tell the truth about what made her happy." When I am feeling especially overwhelmed with life, I stand on my futon and color/paint the letters of this quote, and it helps me "focus on something more positive."
I wish I had a great answer for you, but this is how I deal with my journey to better health. I may never be diagnosed, and I fully accept this. Why? Because for me, at this point in my life, it just doesn't matter. As long as I am pain free, I am happy. As long as I can help others, which I do on a daily basis, as long as I have gratitude for everyday I wake up, I consider myself quite lucky.