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Need help figuring out cause of presyncope, tingling, and back pain

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?

2 Responses
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363281 tn?1643235611
Hello~I am sorry you are experiencing all these issues.

Since all your tests are coming back "normal" I would suggest seeing a chiropractor. You could very well have misplaced vertebrae in your neck and spine that are pinching on nerves, if this is the case, you will have the symptoms you are having.
Helpful - 0
1530171 tn?1448129593
I think there are numerous signs present, to warrant suspicions of systemic conditions with multiple underlying factors.
The fibromyalgia dx is a syndrome, not a single disease,
AKA FMS (Fibromyalgia Syndrome)
Dr. Lowe from the Fibromyalgia Research Foundation supports the premise that most fibromyalgia patients are either hypothyroid or thyroid hormone resistant.

To rule this in or out you must forgo the standard serum thyroid testing (TSH, T3&T4) which only indicate... serum levels (ignore the "normal" TSH result for now!)
and ask for Free T3, Free T4 and Reverse T3  to test for accurate thyroid cellular FUNCTION! These may not have an insurance code, so you may have to pay out of pocket, but it is vital to have this done properly.
It could potentially save you from many years of unnecessary suffering!

IBS and GERD could the ultimate causes of most your health issues!
The combination of these two conditions are indicating
digestive and G/I issues which could have been affecting food breakdown, absorption of nutrients-vitamins-minerals , gut bacterial balance (You could be suffering for years with what is called "Gut Dysbiosis") and intestinal wall integrity.
You need to dig much deeper in this area.
Parasites, SIBO, Candida, leaky gut, hypochloridia,
food sensitivity, must be ruled out!

The above would be consistent with some degeneration,
(spinal arthritis also leading to degenerative kyphosis)
neurological issues (your B12 is NOT normal, it is too low for proper neurological function), as well as mental issues
(neurotransmitter imbalance).

Have the Bilirubin test repeated to establish any trending, which will hopefully lead to the reason of the higher levels.Your doctor needs to find out the cause, if it remains elevated or goes higher.

The post-exercise symptoms are consistent with low
blood sugar & possibly dehydration related symptoms, which could be also leading to your pre-syncope episodes. If you are hydrating adequately, you may still have a dehydration issue at the cellular level.
So there's a chance that water may not be enough.
You may need more electrolytes.I use coconut water which seems to have a nice balance of electrolytes
and it's natural. Don't buy the one with added sugar!

Nutritional, vitamin & mineral deficiencies must be ruled out!

IDK. I have my doubts that your doctors are able to get to the bottom of this.
Honestly, knowing fairly well how the medical system works, I would seek a reputable Functional Medicine or Naturopathic Doctor to help me regain  my health-if I were you. These types of doctors do not usually work with insurance, so most likely it will cost out of pocket, however, I believe it will be money well spent.

Your case is not that complicated, but it falls outside the
traditional box, where conventional medicine has little success.
I guess you figured this out by now and that's why you're here!

Should you have any questions  let me know, however, please note that my comments are not intended as a
substitute for medical advice.

Best wishes,
Niko





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