Hello all. I'm curious for y'alls thoughts and opinions, as I'm receiving conflicting advice and feel very unsure of things. This got very long so TLDR: My therapist thinks I have POTS and possibly other conditions, my family thinks I have an eating disorder, and I'm just confused.
I'm a 25yr afab, and a few months ago I started looking into my long time health issues (yay employment insurance!). I've dealt with what I'm realizing is a fairly severe level of fatigue for a very long time. I would say a slow onset happened in middle school or early high school, but I'm also autistic and public schooling was very very hard for me, so for many years I attributed everything to burnout. Into adulthood, as my energy and ability went down instead of up, I started attributing it all to poor fitness and diet. I've worked 'active' jobs (customer service, on my feet all day) and I now work a desk job with 1-2 days a week of moderate physical activity (working with small children). I hesitate to claim that I'm active, and I'm certainly not fit. I've always absolutely hated working out (though I love swimming!), and tend to feel sick/exhausted with even a low intensity workout.
Over the last few months my health has really declined, and I ended up very briefly in the ER (couldn't catch my breath, extremities going tingly/numb). The last month in particular I've had a really hard time getting food into my body (nausea, no appetite), and chalked the episode up to dehydration from a lack of electrolytes (as did the ER doc). I've been using electrolyte powder heavily and paying attention to my sodium intake since, and I feel somewhat better! Not awesome or 'healthy', but I'm eating again and activities of daily living are more manageable.
I got a Garmin watch a few months ago to try to get an idea of what's actually going on in my body, and have found that my heart rate rarely goes below 75-80 unless I'm sleeping, and is usually hanging out around 90-100, even sitting and laying down. It often jumps up to the 120's from doing light activities like house chores, or even just getting dressed on bad days. On the other hand, it rarely goes above 135ish unless I'm running around at work. My activity is really very minimal on the whole, I imagine it would get higher more regularly if I was more active.
Now, I'm working on figuring out the 'why'. My long time therapist is fairly certain I have POTS, and possibly some other chronic health issues, but two of my loved ones who I really trust and respect believe the root of all my symptoms is my 'eating disorder'. I will certainly capitulate to being a picky eater, not great about getting in my fruits and veggies, and I'm probably not eating enough in general sometimes, but it's moreso due to a lack of appetite. I'm definitely not intentionally restricting my diet, and I'm fine to try new foods, I just don't really like a lot of foods/flavors. I'm actively working on expanding my diet, and generally paying more attention to my intake.
If I have POTS I feel like it must not be very severe, I don't have a history of fainting or anything. I do have a history of feeling faint/nauseous, but only in conjunction with other factors (getting blood drawn, trying to be active, hot summers). My primary symptom of whatever's going on is just fatigue and associated brainfog; I've described it as, "I spend 70% of my time at home, and 70% of that in bed."
I was starting to feel pretty confident in pursuing testing for POTS, but then my family started really pushing me towards eating disorder treatment and now I feel so confused and unsure. My bonus mom says POTS testing won't even be accurate for me because starvation mimics POTS symptoms. I really don't think I'm starving though. I do have a poor diet yes, but my weight is stable (a low stable, I'm a very small human in stature and weight, I've struggled to put on weight my whole life, even with high calories), and basic blood tests don't show deficiencies in anything. I take iron supplements and a multivitamin, and regularly drink nutrition shakes.
As above, I'm actively working on my diet, but it's never going to be perfect or ideal, and the thought of just not pursuing answers, be they POTS or otherwise, in the meantime feels so disheartening. My current energy and ability isn't sustainable, I need something to change. I'm just so confused on where to go from here, I don't know how much I can trust my own judgement, nor how accurate theirs might be.
I'd love to hear y'alls thoughts as folks actually living with the condition. Any and all thoughts and ideas are welcome! I'm sorry this was so long, I felt like the context was necessary. I'm also happy to provide more or answer any questions if it would be helpful. Everything I've seen in this sub has been so kind and supportive, y'all are wonderful. I wish everyone good days and minimal symptoms!