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Azayaka

POTS, Essential Tremor, Fibromyalgia- Can't tell what's what. Anyone else with this combo and what helps you?

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So I'm 29, I've had mild POTS for about 15 years, fibromyalgia for 4, and ET for maybe 2? I also have anxiety. I was diagnosed with ET a year ago and since then I can't really tell if there's been any progression,  but recently I've been getting winded and shaky from some normal activities. Seems to happen after a walk, or maybe it's from going up the stairs to my apartment. Does this happen to anyone else? Sometimes it's so bad I have to just lay down for like 30 minutes, shaking and breathing laboriously. It also has happened after intercourse a few times. What is going on here? It's hard to convince myself this isn't in my head. I feel sort of unsure if this is worth going to my neurologist about.

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Hi. Sorry to hear about your breathing. Mine got worse over this past year and the cardiologist sent me for an echocardiogram, xray, blood tests and spirometry test. All came back OK, I think, as I haven't seen the cardio yet to discuss the results. 

I started off with Epstein Barr Virus, which gave me Glandular Fever back in 1984. I never felt well after that as I had surgery around the same time and that didn't help. Eight years later the label ME/CFS was attached. Fast-forward to 2007 then POTS and neuropathy came on suddenly. Since then I have had the diagnoses of POTS, Ehlers-Danlos type 3, Fibromyalgia, Mast Cell issues, the a pituitary tumour left me with Secondary Adrenal and Thyroid Deficiency. I've just been diagnosed with Diabetes and Non-Alcoholic Fatty Liver.  I don't say I have ME/CFS or Fibro anymore as I think EDS and POTS were the underlying conditions that gave me pain and fatigue. 

Sometimes it's hard to differentiate between the different conditions, that is hard. I wish you well and I hope that you get some help. 

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