Anyone else with POTS trying to lose weight?

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Hey all. I was diagnosed with Postural Orthostatic Tachycardia Syndrome back in July of 2010. Its been a roller coaster since then. Janyary of 2016 I finally got serious about losing weight, though it's not easy with the challenges this illness brings. Anyone else out there also struggling with this?

I'd love to meet some new friends so we could encourage each other and help one another through the struggles.

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  • Faelwyn_the_Rising_Phoenix
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    :/
  • erika_307
    erika_307 Posts: 82 Member
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    Hi... I’ve just very recently been told about POTS. I have not been diagnosed, but I think I may have this. I’ve always just been diagnosed with anxiety, but I feel it is more than that. I will send you a friend request :)
  • Faelwyn_the_Rising_Phoenix
    Faelwyn_the_Rising_Phoenix Posts: 372 Member
    edited November 2017
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    erika_307 wrote: »
    Hi... I’ve just very recently been told about POTS. I have not been diagnosed, but I think I may have this. I’ve always just been diagnosed with anxiety, but I feel it is more than that. I will send you a friend request :)

    I was told it was all in my head or just anxiety for years! Don't give up the fight! I will welcome the friend request. :)
  • allynn777
    allynn777 Posts: 1 Member
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    Hey, I have POTS and have just begun the journey. I was misdiagnosed with adrenal insufficiency and was on steroids for 5 months so I picked up about 10 extra pounds. I'm off steroids now and working on "reconditioning" to get to something that resembles normal/functional. My biggest obstacle at the moment is fear. The last time I did a workout, I collapsed and ended up in the ER. I have a physical therapy routine the doctor at Mayo gave me to follow. I've been doing the strength training part, but I haven't attempted the cardio yet. I just need to bite the bullet. I'm not on any medication for it, but I do take salt tablets and 500mg of Choline in the morning, plus a regular multi-vitamin. I do need to drink way more fluids and start meal prepping again. Now that my appetite is coming back, I need to get into a regular diet. I've looked into buying a recumbent bike to have at home because I'm afraid of having an episode at the gym. My goal is to get back into running. I used to run half marathons and play sand volleyball 5 nights a week. I miss being an athlete.
  • Faelwyn_the_Rising_Phoenix
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    @allynn777 Sorry for the delayed response.
    I've had symptoms of POTS since I was a small child but was constantly told I was he as healthy, tests were normal, it was all in my head, etc. One day when I was at work I collapsed while taking care of a patient and went to the walk-in clinic. I got lucky and was seen by a NP who had transferred up from a Dysautonomia clinic. She knew right away what was going on after I explained all my symptoms.
    I can totally relate with the fear part. Every once in a while I will try to do something different with my workout routine, but usually I just trigger a flare-up. So, more often than not fear just keeps me doing my usual daily walk. It took me about a year to get from being unable to exercise to being able to go for an hour walk on my good days.
    I started slowly....really slowly. LOL 5 min at a time at first then gradually went up from there. It was frustrating but worth it.
    Feel free to friend me if you'd like some extra support. :)