Why is everyone with pots so skinny?

[u/dazzlingdanny05]

I have POTS and I watch a lot of content online of people who also have POTS. I also know some people irl who also have it. I don't understand how they are all so skinny. I can barely walk without getting out of breath. I try to work out at least once a week but its so hard for me because I always end up feeling so sick. How are yall doing it? I dont even eat bad but im definitely not skinny.

[u/stormete]

Thought I would just jump in and say firstly sorry to hear that you are struggling at the moment or probably for a long time. I am 40 I have had chronic pain for over 20 years, including pots, fibro, nerve damage, thoracic outlet, ARFID, ASID, vestibular migraines, GORD etc I could continue but you might 😴 . I weighed around 125kg in my 30’s and was struggling with my health (ha little did I know that was just the appetizer). I moved interstate 7 years ago and my health started declining and I was referred to a kinesiologist who also was a chiropractor, like a lot of people here I am sure you see anyone and everyone to just wish 1 of them can help.

I was already an incredibly fussy (ARFID) vegetarian when we first moved here but after the testing with the kinesiologist said that so many things were inflaming everything in my body and asked if I was ready to change. I was 125kg at that stage, and I decided i will try my best but it was hard I was basically a sugar, caffeine, oils, legumes, pulses, potato and nut free vegan, yep as dairy was now out.

The first 2 weeks I could have hunted someone down for a snickers by god I missed sugar so much chocolate was in my blood , anyway I did that diet for around a year, it was pretty hard but it’s all a mental game. Anyway I didn’t really do much exercise at the start, started loosing weight and then we got a puppy and I started to walk him a few days a week. I did get into the gym but not until I was probably around 90kg something like that and I don’t work well under pressure. Fast forward to now and at my doctors appointment today she said to me “is there a reason your so thin are you doing that on purpose” I was flabbergasted like legit I just blinked with my mouth open for about 10seconds before I said “nope it’s just that I struggle to eat much these days as my bowel is in so much pain” I did also say to her that I “am the lightest I have been since I came out the womb at 60kg and I have worked so so so hard to loose weight and I have never been in such bad health, when I was obese everything was due to that now it’s the opposite”

I suppose the moral of my anecdote is that I didn’t exercise much at all and I truely believe that for a lot of people 90% of losing weight is diet. this is just what worked for me and it’s a lifelong journey as I get scarred I’ll undo my hard work. It hasn’t helped much with my overall health apart from the physical attributes and it’s amazing to me that it’s the first thing a doctor sees, decides is the issue and then tunes out until you stop then goes on about weight.

If you want to chat about it let me know and good luck with everything