As a bit of a history on me; 38, male. Diagnosed with fibromyalgia around 21. Have GERD and IBS. Have dealt with neck problems for a number of years. Occasional bladder issues. Family history of ehlers danlos, lupus, adrenal tumors, blood clots, stroke, POTS, vasal vagal syncope, and colon cancer.
Until last February I was very physically active, running 30+ miles a week and doing plenty of other activities. All of a sudden I started getting extreme pain on the side of my leg from my lower thigh to upper calf. Despite resting it for 2 months it still caused me pain even when not moving. Eventually I went to GP who first tried prednisone, then sent me to physical therapy. The therapist said it was related to my back compressing the nerves, so I worked with her on my core/back muscles for a couple months. However, around that point I suddenly had vertigo which last 2 months. I also began to have brief episodes of presyncope lasting 1-5 seconds, but I never actually pass out. Since then I've had a ton of other symptoms. When I wake up in the morning I usually feel mostly normal and I'm convinced I'm better. Then 2-3 hours after waking I start getting the following symptoms which last until I go to sleep:
-Random periods where I feel like I'm going to faint. These usually are accompanied by tingling or lightheadness. Usually only have a couple of these a days. Absolutely no common denominator in terms of when they happen.
-Constant awful feel that I can best describe as tingling, although that's not quote it. It exists from my upper middle abdomen up through my neck. While it's constant, the degree of it varies a lot, sometimes barely noticeable and other times very strong. It does not feel at all like reflux, which is further confirmed by the fact it doesn't bother me when lying down at night.
-Constant feeling like I have to clear my throat because of neck tightness.
-Dry eyes that feel tired and very blurry
-A feeling of fullness/bloating in upper center abdomen. Feel like something is pressing on both abdomen and my back around the same spot.
-If I exercise I feel ok during exercise, but shortly after I'm done I begin to feel extremely lightheaded,dizzy, and lethargic. I feel like it's hard to breathe and my breathing muscles in chest in back hurt. These symptoms last a day or more after the exercise.
-pain in lower back, occasionally pain in upper back.
-constant pain/tightness in right leg, despite having done my PT exercises now for 5 months.
-dry mouth, feel like I need to drink a lot.
-occasional pain between shoulder blades
I've been on amitriptyline for years but went off it after dr suggested it could be causing problems. Did not change any symptoms. Tried lyrica but so far no noticeable change. Have tried small doses of xanax, ativan, and valium at various points over the last few months.I do notice my muscles feel slightly less tight for a few hours after taking a valium. Other than that it doesn't affect any other symptoms.
Tests I've had;
D-Dimer: positive (not too high though)
MRI Chest/Head - both negative
MRA neck - negative
chest x-ray - normal other than some biapical pleural thickening.
Usual liver and blood count stuff - Bilirubin elevated at 1.1-1.4, Eosinophils at 10%. Everything else normal.
Echocardiogram - normal
Holter - normal, only a vew PVCs/PACs. However, this was on a good day where I had no fainting spells.
VNG - indicated potential central nervous system cause of dizziness
B12 - normal (342)
TSH - normal (1.6)
ANA - negative
CRP - normal .5
ESR - normal 1
RF - normal
Neck x-ray from 3 years ago - disc space narrowing at C%-6 level, small anterior and posterior osteophytes. Straightening of cervical spine.
Heart Rate - I have an apple watch and my heart rate seems very normal, never any tachycardia.
Blood pressure - slightly high after having been normal for most of my life.
I'm at a total loss. I feel like I've been a completely useless human being for about 6 months now. My GP has written me off as anxiety and isn't interested in doing any more tests or sending me to other specialists. At this point I don't even know where to go next. My best guess is it would be useful to have some sort of x-ray/mri of my spine, since nobody has ordered that despite me having had back/sciatic pain for nearly a year. My GP said that would only affect my lower body. (However, my sister has curvature on both the top and bottom of her spine, so I still think it's a possibility for me) Other than that, could it be something like an adrenal or endocrine issue since others in my family have it? Or could I really just be experiencing non-stop anxiety for 6 months despite not actually feeling anxious and not getting relief from any anxiety drugs?