I can't tell you all how happy I am to have come across this website; I'm starting to believe that you guys may have finally provided a diagnosis of some kind for me. I have been sick since I was 15 years old, and it seems like each year I get progressively worse. I am 32 now. Like many of you I have seen what seems like every specialist under the sun, and have had what seems like hundreds of tests run. Every time I switched insurance companies or moved I would do a whole new round of doctors and tests hoping for answers. I was diagnosed about 4 years ago with Fibromyalgia, but my current pain management doctor is convinced that I don't have it. She says that although I have chronic pain and myofascial tenderness, I don't have enough of the wide spread tenderness. So she started me on yet another round of doctors. This is the list that I take to everyone of symptoms: ----------------------------- -deep radiating pain from both hip joints (primarily right) -pinching and catching in both hips (primarily right) -diagnosis of bursitis in both hips, hypermobility in hips and lesser degree in knees -occasional pain in right knee, mostly when hips hurt bad, but it also occasionally feels like I twisted it -frequent knots along shoulder blades with neck pain and headaches -lower back pain generally at same time hips hurt bad -yearly sinus infections (tested negative for all allergens and CAT scan shows no structural problems) -sensitive skin prone to rashes and hives -multiple chemical sensitivity: perfumes, lotions, air fresheners, cleansers cause bad headache, nausea, rashes, “brain fog”, and I can taste them in the air -heightened senses; 20/10 vision, sensitive to loud or high pitched noises, sensitive smell -always cold, especially hands and feet -difficulty finding certain words or losing track of train of thought mid sentence (usually when it's been a painful day) -difficulty with math -chronic fatigue (in my opinion, the most debilitating symptom) -Feeling of extreme distress/exhaustion/panic in the morning when getting out of bed -IBS like symptoms -weak pelvic floor/bladder muscles -chronic insomnia -square feet, low instep, turned up strangely shaped toenails -used to have anxiety and panic attacks, have them less strongly, but still there. Particularly at night trying to go to sleep, and first thing in the morning when getting up -pain and dryness during intercourse -clumsiness, difficult to walk in a straight line -Multiple moles - extremely sensitive to sugar and caffeine -recent increased gag reflex, and occasionally difficulty swallowing at night – i.e. my retainers cause these reactions in putting in and taking out, and it seems like too much saliva builds up when I have them in laying down. - very low tolerance to exercise – my body feels like it doesn’t have the energy to continue. Climbing stairs has become very difficult; one flight feels like 10. -Propensity to lightheaded and dizzy spells w/ cold sweat and being close to passing out with certain stressful/ painful situations. i.e, dentist, IV being put in, bad menstrual cramps. Also feel a strong need to urinate when in pain. --------------------------------------- So I had not gotten anything from anyone. Then on Saturday night, I got a very bad IBS episode after eating Chinese food, which I am guessing must have had MSG in it. About 45 minutes after eating, my neck and shoulders started hurting, then my head started throbbing. Then I started to feel queasy, then dizzy. I had had a bad bout of diarrhea and came pretty close to blacking out. I was sweating so bad I was dripping, and I was freezing cold. After I started feeling a little better I started poking around on line and came across the vasovagal syncope. It all sounded incredibly familiar, and reading about that led me to POTS and dysautonomia. Everything I'm reading seems to match up with my own experience, although I have a lot less dizziness and fainting than many of you. I wonder why it never occurred to me to check blood pressure or worry about my heart. I also wonder why it never occurred to any of my dozens of doctors. When I've had anxiety and a racing heart, I always assumed that it must be related to the pain and tension I was experiencing, but I never thought about the possibility of it being the other way around. So after reading all weekend I called my rheumatologist on Monday, and he said that it seemed feasible, so recommended me to a cardio. I'm very lucky, as they were able to get me in this Monday. Yesterday I went and bought a heart monitor and have been randomly taking measurements and keeping a log. I don't seem to have a whole lot of fluctuation for the most part, but there have been some big anomalies. Most notably was upon waking this morning, laying down at 105/62 w/ pulse 68, to standing 145/123 100 pulse. Also this afternoon when I started feeling really crappy I measured 139/126 78 pulse as compared to 102/69 78 pulse about an hour earlier (both sitting). I really appreciate all of the information I am finding here; I have been reading all of your posts and learning as much as I can. At the very least if I am on the wrong track I can be an advocate for you all.