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lgtaylor100

How Debilitating Are Your Symptoms

  

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I have been very fortunate with my pots. I was dx in nov 06, in bed for 6 months and then in a wheel chair for 2 years. Have slowly been getting better. What really helped me was ballroom dancing. I started with only being able to dance for 3 minutes at a time, I can now dance for two hours. I don't think I would be able to work full time, but other then working, I can go walking, shopping, go out with friends, I even started to travel again. I can't say I am fully recovered, but enough that I can once again enjoy life. I don't know if this type of post helps or hurts those of you who aren't doing well, my intention is to bring hope to those who are struggling so, I've been there as well.

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Hi,

My symptoms come and go. I too have those good and bad days, however I do not socialize as much as I used to. I have been out on occasion and had to call the ambulance or close to passing out on public transportation. So because of that fear and anxiety I tend to stay home.

I can exercise but only for a short time. I become lightheaded and my heart rate is over the top.

My worse day is right before that time of the month. Its been irregular now for over a year but my symptoms are 100x worse the day before and I am confined to my bed.

I am happy to say that I have been able to find some of my triggers. My gut is kicking my butt. I've noticed GI and neurological symptoms always accompany each other. Its not always 100% but if I manage to stay clear of my triggers I tend to have a good day. Still searching to get diagnosed.

God Bless

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I work 40 hours but I am able to take breaks when needed and my team is very supportive of me taking care of myself. I grocery shop and do many of the household chores. However I down close to 100 ounces a day of water, take beta blockers, use counter maneuvers and still nap even afternoon and have times I just have to sit/lie down from feeling pretty syncope. Every day I feel like I'm probably pushing too hard and take take another step but I'm afraid if I stop for a break I won't get back up very soon. I'm still coming to terms with this diagnosis so hopefully I'll learn to manage symptoms better.

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Solely temperature dependent right now. I can work, skate, row, etc---but has to be like 65 or under...even room temperature (72) can knock me down....no idea how to combat that.

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