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NMH / NMS Symptoms for a Newbie


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Anyone experience Pre-Syncope all the time?   I almost never get rid of it.  Most of the time it is medium strength, so i am not ever too worried about passing out, but it makes it really hard to concentrate and work.   

 

I am also very lethargic.  Also I used to run 5 miles a day.  Now I can barely walk into a grocery store.  Anyone else experience this? Anyone else have exercise induced issues?

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Yes, I have no diagnosis, but I almost always feel this way. Sometimes a cocktail of meds and compression will alleviate it to an extent, but most powerful is a liter of IV saline. 

I am pretty well used to it, but it IS distracting and it worries others when I collapse into a wall, am wobbly, etc. knock on wood, I haven't actually passed out since I have been using these meds and fluids.

i used to be quite athletic-gymnastics, figure skating and hockey, basketball, horseback riding from a young age. Now I try to keep kayaking, horseback riding, and hiking as much as I can, but it's a whole lot harder to keep going even though I am still fit. I cannot develop any stamina whatsoever no matter how I train (and I should still have it from a lifetime of exercise). I have not been bedridden or anything, I have always pushed through and kept ant it even if it meant being passed out on some trail 6 miles from my the car (been there).

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Vanderbilt is the best place to go for dyautonomia assessment and diagnosis- I saw Dr. Biaggioni in 2012. They also have a Research program that you can participate in that is free if you are accepted and provides a lot of info into your disorder and education. What helped me was to keep hydrated, Salt tablets, eating smaller meals, avoid getting overheated,  I bought a used recumbent bike and no matter how bad I felt I exercised 20mins daily and lower extremity weights/squats 3x/week no matter what, Increased sleep, decrease stress(easier said than done). Cognitive behavioral therapy- since having illness is very stressful, do not bend over,-squat instead, no climbing stairs if possible, avoid eating large meals, avoiding lactose, white sugar and other refined carbs & gluten since they can increase symptoms, do not give blood, no strenuous exercise, avoid fatigue, get plenty of sleep, do not give blood, no energy drinks, no blowing up balloons, no reaching above head. I hope this helps you too. 

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