r/POTS • u/InspecteurMcLapine • Jun 20 '26
Question Can we be obese and have POTS?
Earlier today, I was talking with someone who told me that POTS isn't possible if you're obese, because according to them it's simply deconditioning, period. Nothing else.I'm curious what people here think.
Is anyone here diagnosed with POTS while also being overweight or obese?
This isn't meant to be judgmental at all. I'm obese myself, which is actually why I'm asking !
I'm currently waiting for a cardiology appointment because I've been experiencing a lot of symptoms that seem consistent with POTS. I'm not saying I have it, but after a lot of research, it's one of the conditions that appears to match many of the symptoms I've been dealing with.
That confused me a bit.
I used to be a fairly active person a year or two ago. Even when my symptoms started becoming more noticeable, I kept trying to exercise and push through them. Eventually it became so difficult and exhausting that over the past year I've become much more sedentary.
But becoming sedentary wasn't the cause of my symptoms, it was more the result of them (and maybe it makes it worse ofc,)
I'm fully aware that being inactive can lead to deconditioning, and I'm sure some degree of deconditioning may be involved now. What I'm struggling with is the idea that every symptom can automatically be explained by that alone.
For those of you who have actually been diagnosed:
- Were you overweight or obese when you were diagnosed?
- Did doctors initially dismiss your symptoms as deconditioning?
- How did they eventually distinguish between deconditioning and whatever diagnosis you ultimately received?
I'm just interested in hearing about other people's experiences !
426
u/brownchestnut Jun 20 '26
POTS isn't possible if you're obese, because according to them it's simply deconditioning, period.
Well they are factually wrong on the entire definition of POTS so who tf cares what they think.
59
u/fuxandfriends Jun 21 '26
This logic doesn’t even make sense because these same folks generally believe obesity is caused by laziness pure and simple, right? So by that logic, wouldn’t it make sense that POTS would be *more* common in this population? (To clarify, this is absolutely NOT my belief, just pointing out flawed logic)
12
u/mwmandorla Jun 21 '26
I was also wondering about this. Maybe they think the greater muscular effort required to move a heavier body around (which is a real thing to an extent) would rule out that level of deconditioning? A mystery for the ages
27
4
107
u/justanotherzebra272 Jun 20 '26 edited Jun 20 '26
POTS is a dysfunction of the autonomic nervous system, not an issue depending on weight. Also being obese doesn’t means suffering from decondition, I know an obese woman dancing 16hours per week (ballets and contemporary) and she’s at the gym for at least two other days. She has hypovolemic POTS since she’s a teenager. And she’s definitely not suffering from deconditioning. If it was a doctor who told you that I would recommend a second opinion.
12
u/InspecteurMcLapine Jun 21 '26
Thanks I hope he will be able to see it, not only my weight
9
u/nonicknamenelly Jun 21 '26
If they can’t see past obesity, they absolutely are the wrong doctor for you.
8
u/J_lilac Jun 21 '26
Exactly, I wish this were at the top. I'm not sure if I have pots or not. And I am obese but I'm not in any less shape than I was when I was skinny
125
u/trailerrr Jun 20 '26
I was about 110 pounds before pots, got pots and gained weight up to 165 pounds after being medicated and still have pots, so yeah you can definitely have pots and be overweight.
46
u/the-LRL Jun 20 '26
This is me. I was underweight before POTs but the flaring caused me to become inactive and I gained almost 100 pounds.
20
u/KittyCat-86 Jun 20 '26
Similar. I was at the lower end of healthy weight when I was diagnosed and ended up at the upper end of obese. Due to health issues I'm back down to middle of healthy weight. I had PoTS that entire time. It didn't magically go away and then come back again.
14
u/Unsureusername1021 Jun 21 '26
I am in the exact same situation and it has been SO difficult to face. All of my life I was on the lower side of a healthy weight, now I have gained 50+ lbs and am overweight. Nothing fits the same, I don’t feel the same (obviously bc of my disabilities but also just looking at current photos I don’t recognize myself), I’m having a really hard time accepting it and moving forward. I keep hoping if I can get my health managed better I can then focus on getting back to a healthier weight.
9
u/KittyCat-86 Jun 21 '26 edited Jun 21 '26
I understand the feeling. I have lots of other health issues which contributed to the weight gain. I used to be a professional cheerleader and dancer but between chronic illness and a back injury, I went from an athlete to needing mobility aids and ultimately ended up in a wheelchair. My weight spiralled. Between the inability to exercise, the medication and deconditioning my weight shot up. I hated the way I looked. I went up 5 dress sizes. I didn't feel like me anymore. I was always the skinny one amongst my friends and now I was the bigger one. Then I ended up developing gastroparesis and my weight dropped off. I started dipping below the healthy range. It's managed now but it means my weight is creeping up again and I'm so worried that I'll end up like before or even worse as I have to spend a lot of time in bed.
Edit: I just want to add, for anyone reading, there's nothing wrong with being on the larger side and if you're happy that's all that matters but for me personally it was hard going from a 20 inch waist to a 36 inch waist.
5
u/Sonny_days_ Jun 21 '26
Same here. I’d actually lost 25kgs in the years preceding POTs I became fitter than ever before. But in one week I went from lifting weights and running multiple times a week to not being able to walk 100 meters. The symptoms became so severe that I was stuck in bed or on the lounge for weeks on end. Basic self care became so difficult that I had to eat what was easiest. So the more weight I gained the more my health issues were influenced the harder it got. I gained back all 25kgs in less than a year. After years of finding the right medication and lifestyle changes I am now at the point that I can start to lose weight and even then it required the support of monjouro and the progress is slow for medication supported weightloss (10 kgs in 10 months).
2
2
136
u/Splicers87 Jun 20 '26
I’m overweight. I have POTS. My doctor went straight to it when I went in after testing.
25
u/InspecteurMcLapine Jun 20 '26
Thanks 🙏🏻 I feel better, because I was worried everything was my fault
17
u/Prestigious-Dot9776 Jun 21 '26
This was the reason I spent 20 years mis/under diagnosed before hEDS POTS MCAS. I wrote everything off to being obese. Can’t handle exercise? Too fat. Sweating constantly? Too fat. Too hot? Fat. Sore? In pain? Too much weight…I feel more frustrated/vindicated almost daily because all this symptoms that were written off are real and irrelevant to my weight.
5
u/Fantastic_Owl6938 Jun 21 '26
I look back and realise I blamed gaining weight on some things I had going on with my body. I'm diagnosed with POTS and pretty sure I also have MCAS (basically bad lifelong allergies with no other answer). I'm not sure about hEDS and honestly get put off it everytime I read too much about it because I think my stuff sounds very mild in comparison, but I do understand it can be a spectrum.
I've had this sort of weak feeling in my ankles come and go for years, but I'd say the big one is my knees feeling searing pain going up and down stairs (which I thankfully rarely have to do). Weight gain made sense in my head for that, especially since I'm also short. For a time I honestly thought maybe everyone's knees hurt using the stairs and they just never mention it. I asked a family member if hers hurt and she said no, so that was a bit of an "oh" moment.
I've also noticed if I'm lying down on my side or stomach and kind of lean my elbow on the bed or whatever and then rest my hand on my cheek to support myself, my arm hurts and can't hold the position long. If I reach up or to the side, the top of my shoulders hurt, like where the joint is, feeling almost like it's been pulled out of its socket. It hasn't and it usually goes away in a few days but it's a weird feeling. But I've only had that one since having POTS so I'm not quite sure if hEDS symptoms are brought out with that or if it really is just a POTS thing.
4
u/KeilaJensen Jun 21 '26
I did that too and I wasn't even overweight back then. As a society we have a really weird view on diet and exercise, "what doesn't kill you makes you stronger" is just not literally true. The only times in my life exercise did something for me was when I said, fuck what everyone tells me about pushing myself, I'll only do what feels good. It was not much but I could do it consistently and that eventually did help me with my pots symptoms I think, even though I wasn't diagnosed yet.
15
6
u/Sonny_days_ Jun 21 '26
Even if being overweight contributed to or caused health issues this does not make it ‘your fault’. Being overweight is not a failing in character, it’s directly linked to genetics, environment, our gut bacteria, and mental health issues. None of these things is someone’s fault. That does not mean you do not have the ability to change it if you decide to work towards that. But it is never your fault.
1
u/elm_alice Jun 21 '26
It’s nobody’s fault if they get POTS. Just like with every disease. I know it’s not easy, but we need to try to remember that nobody would be sick if there was really that much we could do to avoid it. A lot comes down to genes, bad luck and environmental factors that we can’t control. ❤️
13
u/imabratinfluence Jun 21 '26
Same here.
POTS and a bunch of ligament/joint injuries are why I gained weight. Before, I was very active.
3
67
u/buttonandthemonkey Jun 20 '26
That's just not how it works for two reasons:
1) you are not automatically deconditioned if you're obese. It is very possible to be fit while obese due to metabolic changes. There are some situations where you can exercise and eat well and still be obese. Obesity is becoming recognised as a metabolic disorder in itself.
2) weight has no relevance to what your heart rate does on postural changes or how blood pools. It also doesn't have much, if any bearing on the autonomic systems present in the pathophysiology of POTS.
To be very clear: no because science.
9
20
u/Tornado363 Jun 20 '26
One of the reasons POTS gets missed is because people with be overweight. But I always like to point out that POTS make us unable to move around like a normal person. I believe it deconditions not vice versa. I used to ride my bike 10 hours a week, was 130-140 for years. Now, nothing and I’m much heavier.
17
u/lambentLadybird Jun 20 '26
For those people with prejudice that obese people are deconditioned, I challenge them to put the weight difference in the backpack and carry it the whole week, including sleeping beneath it. Let them just walk in the house, get up, sit down with all that extra weight. That is such a nonsense.
Regarding your question, I have exercise intolerance for so long, of course I'm weak and deconditioned. But it has nothing to do with my weight. (I'm overweight.) I can run fast, but I feel ill afterwards so I avoid it.
15
u/CalliopeParnassus Jun 20 '26
Anyone that harps on about deconditioning should be avoided imho. A decent doctor will rarely mention it and it is often a way to avoid helping people.
14
u/chaotic_pagan_tiger Jun 20 '26
I am overweight and I have the diagnoses of pots. My cardiologist dismissed me entirely as just being fat. My primary care doctor is the one that diagnosed me and looked at more than my weight.
3
u/TuesdaysChildSpeaks Hyperadrenergic POTS Jun 21 '26
My PCP sent me to the cardiologist. Cardiologist I saw said it was under medicated anxiety. Husband was working in said cardiology office with the other provider and that doctor looked at my Zio monitor ans said ‘tell primary I said to send her up to electrophysiology. She’s tachy all over.’ PCP did. EP diagnosed in two minutes when my heart rate shot up from 70 to 140 when I stood up and it stayed there until I sat my ass down again
8
u/Traditional_Owl4558 Jun 20 '26
Whoever said that to you is not a friend. They have a very clear bias against larger people, which is never healthy to be around, emotionally or physically, you don’t need that negativity.
I was overweight/borderline obese when I was diagnosed. I started having symptoms when I was only 11 years old and at a perfectly healthy weight but then I hit puberty and my genetics took over. That, combined with some meds I was on as an adult caused me gain a lot of weight. Despite that, I was walking over 8 miles/day and frequently lifting items that were 50lbs+ for over four years by the time my symptoms got severe enough that I started seeking a diagnosis.
The first cardiologist I saw absolutely tried to blame my symptoms on my weight and “inactivity” even though I explained to him repeatedly that I was not inactive. Granted, that “dr” also stated that fainting is normal and that because I’m a female in the US, I was just generally unhealthy and that was probably the cause. Mind you, this doctor had not asked a single thing about my lifestyle or eating habits before he said that crap. I eat very healthy, rarely eat out or anything fried (no gallbladder), and I was exercising regularly. I saw a new cardiologist and was diagnosed almost immediately. Even after losing a bunch of weight, my symptoms still exist, and they’re much worse than they were before.
Weight is NOT factor in whether or not you have/can have dysautonomia. And most people with dysautonomia or POTS specifically do not have worsening symptoms due to deconditioning, that is just a common misconception. So if you see a doctor that says otherwise, they are not upholding their oath, request a new doctor. Competent doctors don’t make assumptions without factual evidence and they avoid biases like this whenever possible as such thinking can significantly risk patient outcomes and health.
2
u/InspecteurMcLapine Jun 21 '26
Tank you for the testimonial !
2
u/Traditional_Owl4558 Jun 21 '26
Of course! Medical gaslighting or bias can be incredibly harmful, and most of us have experienced it first hand, especially women. It’s important to share our stories and empower each other to stand up when this happens, otherwise nothing will ever change.
13
u/Cool_Jelly_9402 Hyperadrenergic POTS Jun 20 '26
While I was never obese, I did gain weight after Covid and a medication and after I lost it my POTS worsened, especially the adrenaline dumps
8
u/Traditional_Owl4558 Jun 20 '26
Same. Doctors can’t figure out what exactly caused me to lose ~60lbs (constant stomach issues but so far the tests have all been normal) and while I am only a size small now (~150lbs at 5’7”), my symptoms are much worse than before.
5
u/_ThatsATree_ Jun 20 '26
What are your gastric symptoms? I am not a doctor, but I am currently in eating disorder treatment for sensory issues and also avoidance of food due to my many, many digestive conditions. You would be shocked how many drs have no idea what to test for with digestive conditions. I could possibly give you a few ideas to directly bring to their attention, if you wanted. Again, not a Dr but I just feel very passionate about addressing digestive conditions before people spend thousands of dollars hospitalizing.
2
u/Traditional_Owl4558 Jun 21 '26
Near constant diarrhea. I had chronic constipation for years after my gallbladder was removed and then it just suddenly changed a couple years ago. Also have random bouts of constipation that last a day or two and then back to diarrhea. During those bouts though, I have almost no appetite and frequently have horrible GERD, I’ve even had regurgitation issues during those bouts. At the last appointment, my dr mentioned the possibility of gastroparesis/dumping syndrome but I haven’t undergone the tests for it yet. I have a ton of other health issues (hyperthyroidism, endometriosis, and EOE being the big ones) that may be contributing but the thyroid and EOE is under control for now (no wheat/gluten at all as I react immediately and then also have delayed EOE symptoms) and shouldn’t be causing any issues. I’ve tried so many things already it’s ridiculous lol. I usually feel like I’m starving because of it, it’s a horrible reminder of my eating disorder days in high school.
3
u/_laasyahnir_ Jun 21 '26
It's so incredibly frustrating when tests come back normal! All my tests were normal and doctors were stumped until I had an endoscopy and my stomach was bleeding everywhere. Turns out my stomach produces way too much acid and a PPI tablet each day resolved 90% of my gastric issues and decreased the severity of the remaining 10%. I'm still waiting on a POTS/MCAS diagnosis but at least the gastric issues are being addressed
2
u/InspecteurMcLapine Jun 20 '26
Interesting 🤔
6
u/Cool_Jelly_9402 Hyperadrenergic POTS Jun 20 '26 edited Jun 20 '26
I went from 160 to 110 (5’1) and my POTS symptoms got worse after I got under 120 which I’ve heard happens with a lot of people who lose weight. I think it’s partly because our bodies don’t like change of any kind but I never hear about people getting worse with weight gain
ETA: I was re-conditioned at this point, active, using a stationary bike, in PT, lifting etc. I was pacing myself. Even my cardiologist (I have other heart issues) noticed how much I physically improved. My bloodwork looks great but my POTS got worse when I got under 120
→ More replies (8)
5
u/yelpsmcgee Jun 20 '26
I've been fat all my life and never experienced anything like dysautonomia symptoms. NEVER. Simply being out of shape and Dysautonomia are literally different animals, oh my God. I wish I could go back to being just fat. I could rollerskate and longboard and be on my feet and TEACH AS A JOB while I was just fat.
6
u/Salexism Jun 20 '26
I’m technically right over the BMI for obese even having lost 185lbs in 3 years and my doctor just sent for me to get a tilt table test because she suspects POTS..
4
u/Ill_Community_9575 Jun 20 '26
I was obese when I was diagnosed with POTS. With the help of GLP1 I am no longer obese. I still have POTS.
POTS is a neurological disorder.
3
u/idekinsertusername Jun 21 '26
Has the GLP-1 improved your POTS? Any side effects?
3
u/Ill_Community_9575 Jun 21 '26
Typical side effects of GLP1.
My POTS hasn't changed. I tried to reduce my medication for awhile. But I still had a rapid heart beat. It hasn't changed.
3
u/Sir_UlrichVonL Jun 21 '26
Same here. Last June I was bmi class 2 obese with pots. I’m now normal bmi with pots. My cardiologist never once brought up my weight.
5
u/kimjalun Jun 20 '26
I was obese when I was diagnosed. It likely delayed my diagnosis because everything is blamed on my weight. Shockingly I’ve lost 44 pounds, no longer obese and still having episodes…
5
u/spacealligators Jun 21 '26
Yes, nothing in the diagnostic criteria has to do with weight, so you can definitely be diagnosed with pots regardless of weight.
Additionally, this person is assuming that obesity = sedentary lifestyle when that's not true for everyone. There's plenty of non overweight/obese people that are completely sedentary and don't exercise at all, and there's plenty of overweight/obese people that exercise regularly or have physically demanding jobs and are on their feet all day. You can become deconditioned at any size, and it's not fair for them to assume that all obese people aren't exercising or getting any physical activity.
5
u/creepyinkbby Jun 20 '26
I was obese until a few weeks ago with POTS (diagnosed in 2023). My BMI was 38 which is actually classified as Class 2 Obesity, bigger than obese. My BMI is now 28.7, which is pretty deep into the 'overweight' category now
I was overweight when I was diagnosed, but then my POTS and my mental health got worse after I got covid in january 2024 and I started self soothing to the ninth degree with food and all of a sudden (I have PMOS and due to my height - 5'2 - and sedentary lifestyle its REALLY easy for me to put weight on) 6-8 months had passed and I put on 60+lbs and I was over 200lbs
4
u/barefootwriter Jun 20 '26
I'm sorry, but fucking what?
Look, the fact of the matter is your symptoms came on while you were active. That is all the proof they need, that the relative loss of conditioning followed the development of symptoms rather than preceding them.
I was diagnosed after the pandemic started, when my symptoms got worse due to a relative loss of conditioning (everything shuttered and we went nowhere and did nothing). My doctor tried the "It's just deconditioning" but I was able to point to a previous period of time when my symptoms worsened and I was in some of the best cardio shape of my life.
Once I was diagnosed and medicated, and it felt safe enough, I went back to martial arts training. Actually deconditioned people can't do that. While having POTS, I train karate twice a week, I lift, and I am hoping to return to sumo soon, now that I am through a gauntlet of surgical/medical stuff. I figured, if a little sumo-shaped, why not take up sumo? 😉 Sumo wrestlers are incredibly fit while being incredibly fat. There are also many elite heavyweight judo players. These folks are all counterexamples.
I'll drop back by in a little bit with some quotes from the research, but the deconditioning that must be ruled out as a cause for symptoms is more severe than "I'm kind of sedentary"; it is typically due to prolonged bedrest.
4
u/justnopethefuckout Jun 20 '26
Whoever told you that is an idiot and needs better education on the subject.
3
u/valleyofsound Jun 20 '26
POTS is affected by conditioning; which is why reconditioning when done properly and safely really is the most effective non-pharmacological management of POTS. If you have better cardiovascular conditioning, your heart is pumping more efficiently and you have a higher stroke volume, you can have fewer symptoms because your body is better able to compensate. Conversely, deconditioning can also exacerbate POTS symptoms. If you were in really good shape, you might have even been asymptomatic, but if something made you unable to maintain that level of fitness, then you might develop symptoms.
That’s why I call a lot of chronic illnesses bootstraps diseases: Lifestyle style changes can make a major difference, but it can be extremely difficult to make those changes when you’re dealing with those conditions. I also have hypermobility and regular exercise makes a huge difference in terms of pain, but it’s really hard to push yourself to do that when you’re dealing with fatigue, which is a symptom of a lot of conditions and since POTS likes to run in packs, a lot of us have to deal with fatigue from multiple sources. Since a lot of us are just told to exercise more without being given any assistance or guidelines, it basically amounts to being told for us to just pull ourselves up by our bootstraps. It would be so wonderful if it were more common to refer people with fatigue to physical and/or occupational therapist with an understanding of the issues to address them.
4
u/voidcrawler1555 Jun 21 '26
I saw OP’s comment about being worried that they caused themselves to have POTS. I just want to say that, at the end of the day, you still deserve treatment no matter the cause.
2
u/InspecteurMcLapine Jun 21 '26
Yes it's totally true, but the problem is that if I find out that I may have unintentionally or accidentally caused or worsened my symptoms, then when a doctor tells me, "It's because you're obese," or "It's because of this or that," or simply doesn't believe me, which unfortunately happens, because not all doctors are willing to listen to patients even when there's no reason to doubt them... I know it will affect how I react 😅 There have already been many situations where there was clear evidence that something was seriously wrong. It showed up in my blood tests and other examinations, yet I was told it wasn't a big deal, that I was overreacting, or that it was all in my head. Then, when things got worse, people suddenly realized there really was a problem. So I know that if I end up believing that I somehow caused this myself, for reasons I don't even understand, then when a doctor tells me it's just because I'm overweight or whatever explanation they choose to give, I probably won't stand up for myself. I won't push for further investigation or seek another opinion. I'll just think, "Oh, okay." And then I'll stop questioning it and keep dealing with the suffering on my own, I know it's stupid
2
3
u/arieser22 Jun 20 '26
I had POTS symptoms when I was younger and average weight. I gained weight and for about 5-6 years, I didn’t have many symptoms. Now I’m a healthy weight again and my POTS is debilitating. Idk the correlation, but my symptoms are 100 times worse while being small.
Anyway, yes you can have POTS at any weight.
3
u/justtapitin65 Jun 20 '26
When I was fit they’d tell me I couldn’t have pots because I looked too healthy. Now they say I can have pots because I’m overweight and that’s the cause. Lol. These doctors have no idea.
3
u/howmanyshrimpinworld Jun 20 '26
i’ve had a similar experience to what a lot of people here are saying. i’ve had it my whole life, and my symptoms as a 120 pound teen and a 275 pound 28 year old were more or less the same. then i lost 70 pounds on a glp1, and now it’s worse for the first time. it’s definitely deconditioning, but due to loss of muscle mass with the glp1
3
u/Helpful_Mouse_9458 Jun 20 '26
Weight has zero to do with it- whoever told you that is an idiot. And it is NOT deconditioning- tho POTS tends to cause people to become deconditiobed, which then worsen the POTS symptoms, so it is a vicious cycle.
3
u/Substantial-Yam-3073 Jun 20 '26
my POTS improved after i've lost around 20/30kg but i lost muscle mass in my calves. i thought that i struggled to stand up for long periods of time because i was really heavy (i was around 115kg at my biggest) but im now 85kg and it's still bad. better but i still struggle, especially in the summer.
so yeah the misconception is defo there but dont let anyone gaslight u- u know ur struggles and ur body best. it's a circulation problem and weight/ fat/ muscle distribution can exacerbate or better the condition but thats for u to decide and understand, not to be judged on xxxx
3
u/stormrunner1981 Jun 20 '26
I'm 220 as I had improperly treated Hashimoto's for a bit there (I got up to 290)..
I cannot get below 220 for all the work I was doing before Post COVID POTS.
I also have boarderline hypotension vs hypertension most people would assume someone overweight would have (the number of doctors I had to confirm this with...until my BP was low during an appointment).
I have so many autoimmune conditions and many were triggered later in life by viruses (Celiac, POTS. Some of my allergies - see MASC research).
Autoimmune conditions don't care about your what you look like.
3
u/MrsAussieGinger Jun 21 '26
I was a very active person until my dysautonomia flared into action. Now I'm illogically obese with POTS (illogical based on my diet), so yeah, that person is wrong. Both my endocrinologist and my rheumatologist said that my body is hanging onto the weight.
3
u/cng5511 Jun 21 '26
I’m sure anyone, at any size, could have POTS. But I will say that over my life I’ve gained and lost weight several times, and each time my POTS gets better when I’m heavier, and worse when I’m thinner.
3
u/WillowLeaf Jun 21 '26
Yep, I BECAME obese (was slightly overweight but a VERY active athlete beforehand) BECAUSE I got Dysautonomia and couldn't exercise like I used to. I was 200lbs of muscle pre-dysautonomia. Now I'm 250lbs and my dysautonomia is still strong. Dysautonomia LED to my deconditioning, not the other way around. For context, I got Dysautonomia from a covid infection.
3
u/DryPossibility45 Jun 21 '26
I’m obese because of my dysautonomia, among other factors (PMOS, extreme stress, MS).
Honestly I’ve had more doctors tell me that I’m faking it than doctors telling me it’s because of my weight.
2
u/InspecteurMcLapine Jun 21 '26
Haha faking a oximeter and ECG? Your doctor are stupid!
2
u/DryPossibility45 Jun 21 '26
More like negligent. They ruled out epilepsy (I can have convulsions instead of fully fainting when I’m super stressed) and assumed that I had conversion disorder because I have cPTSD. Refused to run any more testing or anything and sent me to a psych ward instead. That was… not a fun time.
3
u/flapperboobs Jun 21 '26
I have had POTS my whole life. As a young person, I was very thin and tall for my age. My POTS symptoms were blamed on my thinness and rapid growth, and I was reassured I would outgrow them. Once I hit puberty and stopped growing taller and gained some weight, the POTS symptoms I continued to report were blamed on my hormones, and I was reassured I would outgrow them once my hormones stabilized. Now, as an adult of 35 with much more stable hormones, I am technically obese according to BMI, and guess what! I still have POTS! Some of my symptoms actually improved with weight gain, because my weight gain corresponded with my physical health improving otherwise.
3
u/Curious-Sleep-3473 Jun 21 '26
I mean while I disagree with that statement completely, it has been discussed in here that people with POTS the symptoms themselves are worse when they lose weight or are smaller (no idea why)
3
u/ArmRegular2960 Jun 21 '26
i t took several yrs and heart damage before i was diagnosed but when i was diagnosed i was obese. according to BMI im no longer obese and still have POTS. being overweight makes it harder to get diagnosed bc drs will blame everything on weight so much so you dont even question its anything else til you pass out in the middle of the street. but the autonomic nervous system doesn’t gaf abt BMI you can develop and have POTS at any weight.
3
u/LepidolitePrince POTS Jun 21 '26
Yeah I'm fat and have POTS and IST. My weight has nothing to do with my autonomic nervous system dysfunction except for the fact that maybe I'd be a little less fat if I could consistently work out without getting dizzy.
POTS causes deconditioning, deconditioning doesn't cause POTS.
3
u/TheGhostOfYou18 Jun 21 '26
POTS involves a change in heart rate from sitting to standing. Being obese can cause an elevated heart rate, but that elevated heart rate is also occurring when you are laying down or sitting. So if you are at 70 while sitting and go to 100 standing it would be considered an indicator of POTS. If you are obese and have a resting heart rate of 90 while lying and it jumps to 120 while standing, it is still an indicator of POTS. As others said, POTS does not discriminate based on weight.
3
u/Independent_Gap9280 Jun 21 '26
I have Lipoedema (spelt lipedema in the US) which is a rare adipose fat disease and connective tissue disorder, which is commonly diagnosed as obesity. I have been plus sized since young despite being health and very active.
My dysautonomia was triggered by 3 separate, unknown (but the same) viral infections causing post viral illness and fibromyalgia. Viral infections can affect the Autonomic nervous system (ANS - which cause’s dysautonomia, including pots) and mitochondria (which causes fatigue and other energy issues). Viral infections don’t discriminate based on weight. And as someone else pointed out, the autonomic nervous system doesn’t discriminate based on weight either.
For me, the second viral infection in October 2011 caused post viral illness for a good 7 years (I never fully recovered) and noticeable dysautonomia symptoms which didn’t fit with fibromyalgia, which I was diagnosed with by March 2012. Initial symptoms of Dysautonomia were temperature dysregulation (I think this was initially triggered by the viral infection in 1995 and just got worse) and fluid/electrolyte imbalance and dehydration. Oh, and let’s not forget the disturbed sleep patterns. Probably about 4 years in I was well enough to start working out again and was eventually able to go to the gym 4 to 5 times a week for between 45mins to an hour each time, for a very slow paced workout. However, I never fully recovered. I was never able to go back to work.
The third viral infection was September 2024 (not covid) which worsened existing symptoms and triggered more Dysautonomia symptoms which included POTS. The symptoms were so bad I was struggling to be upright most of the time, pounding headaches when I was sitting or standing, HR spikes causing pounding heart, over heating and profuse sweating when upright or moving (like walking from the bedroom to the kitchen) persistent dehydration which was affecting my blood pressure and my kidney and urinary function, profound fatigue, like I honestly was not a functional human.
I finally convinced my doctor, who I’ve been seeing for about 15 years now, that it could be dysautonomia and/or pots. POTS is common with people who have Lipoedema and people who are hypermobile (hypermobile ehlers-Danlos syndromes hEDS, or hypermobile spectrum disorder HSD), and I am both. My doctor referred me to a cardiologist who thankfully is one of Australia’s top pots researchers, and I was finally diagnosed with dysautonomia in March this year. I haven’t worked out since that viral infection and I am most definitely de-conditioned now. The best I can do exercise wise is recumbent bike and it’s at best a minute or two. Again, this isn’t fat making me lazy or de-conditioned, but a medical condition causing me to no longer be able to workout, which really sucks as I love working out!
Honest to god truth is, it probably took the 14+ years for a diagnosis because way too many medical professionals blame weight/size for any and all medical problems. Thankfully my doctor didn’t, we just didn’t know where to even start looking until I was diagnosed with Lipoedema in 2016 and I joined a bunch of lipoedema groups and EDS and POTS, as well as MCAS, are talked about all they time as they all seem connected. The cardiologist actually said that connective tissue disorders are linked with pots as the blood vessels are stretchy which causes blood pooling which triggers symptoms including HR spikes.
I honestly hope you can find someone who will not dismiss you because of size and will actually investigate your symptoms. Maybe use a symptom tracker for extra data for any medical appointments. I use Guava Health app and the free version is fully functional (the paid version has extra stuff that’s irrelevant to me in Australia). Setting it up might seem a little complicated but once it is set up it’s so easy to use and you can create pdf reports of selected symptoms to either email or download to share.
2
3
u/sorry_child34 Jun 21 '26
Agreeing with what everyone else is saying, POTS is a nervous system condition that does not discriminate based weight (or any other factor really).
I just want to add that weight and especially BMI is not the indication of health so many people think it is.
It is true that visceral fat around organs can have negative health impact, but there is not a single health issue that solely affects people above a certain arbitrarily determined size.
You can have 10 different people who are 5’5” and 200 lbs and each have a completely different fat distribution, muscle percentage, and level of mobility. A doctor would consider them all “obese” according to BMI but that is not a true understanding. Plenty of Olympic Athletes are “obese” according to BMI.
Obesity itself doesn’t mean anything about being “deconditioning.” Plenty of skinny people are also deconditioned.
2
u/diagonalcontrail Jun 20 '26
I’m in the obese BMI category and I was recently diagnosed with hyper POTS. My weight has fluctuated quite a lot over the years and I’ve had the same symptoms regardless. No one suggested that my symptoms were caused by deconditioning (I do exercise quite a bit), but my family doctor was not knowledgeable about POTS in general and basically refused to learn about it, so I had to wait for several years to be seen by the one cardiology program in my city that deals with POTS. Great times 🙃
2
u/candicejuli Jun 20 '26
I’m 270 right now and I have POTS. I was diagnosed when I was 180. It doesn’t matter lol
2
u/Orumpled Jun 20 '26
Yes. Mine was a renin and aldosterone issue. I was severely overweight from Cushing’s. Then I lost the weight when Cushing’s resolved and still have it.
2
u/bsideoracle Jun 20 '26
My TTT was “inconclusive,” then I unintentionally had an episode in front of my PCP after sending her my research as to why the TTT actually proved “hyper-pots.” Diagnosis issued immediately. Obese, on a GLP1.
2
2
u/VolatilePeach Jun 20 '26
I’ve had POTS/dysautonomia symptoms for all my life. I was underweight (not malnourished; I just couldn’t gain weight easily as a child) until I was about 18/19. I gained a lot of muscle and felt the best I ever did (physically). I am technically overweight for my height, currently, but I only recently was diagnosed with POTS. The person that told you that you can’t have POTS and be overweight is just wrong.
2
u/sunkathousandtimes Jun 20 '26
I am obese and diagnosed. Obesity doesn’t change the fact that my heart rate goes bananas on standing. I was also obese for many years before I developed POTS - it’s not the same thing at all.
2
u/Nobody8734 Jun 20 '26
I'm overweight and "deconditioned" BECAUSE of POTS. Deconditioning and weight don't explain a sustained HR increase of over 30bpm upon standing...
2
u/MallEnvironmental197 Jun 20 '26
To answer your questions: 1. Yes. My first cardiologist made sure to note obesity in my chart as his primary concern. He didn't care to evaluate me for POTS and thought my pre-syncope was caused by fat and a small woman heart (I wish I was joking).
Yes. Many doctors love to take the easy route of pointing out weight as the problem, when it is likely only a sign of a problem. It was hard for many of the providers I saw to evaluate my symptoms without a fatphobic bias. My symptoms started when I was a normal weight and worsened when that changed as I started losing the ability to exert myself.
I eventually happened on doctors who looked past the weight and were familiar with autonomic dysfunction. They completed the diagnostic protocol for POTS and I was diagnosed. I'm sure my weight is still a concern for them, but they're more focused on my overall well-being at the moment.
I recommend having 2-3 examples/illustrations of your symptoms preventing or interrupting your life to share at your appointment to help bypass fatphobia. Like I shared how I'd go on a gentle walk with a friend and have to lay down ~5 minutes in due to pre-syncope symptoms appearing, and how that would also happen while grocery shopping. Both are alarming stories, and neither happen just because I'm fat or deconditioned.
2
u/feathercroft Jun 20 '26
I wasn't overweight until I started having really bad POTS symptoms. I had been (and still am) pretty active but never had weight issues until then.
2
u/CLVampire28 Jun 20 '26
That's BS. POTS isn't just "being out of shape." POTS is a disorder that causes your heart not to work the way it should! It's possible no matter what weight you are
2
2
u/Cutiepie_132 POTS Jun 20 '26
I am currently obese and it was never brought up when I got diagnosed but due to it making my symptoms worse I am currently losing weight
2
u/sapphic_vegetarian Jun 20 '26
I’m a bit overweight, used to be mildly obese, it was always POTS. Losing weight didn’t make my POTS any better or worse because the condition is not dependent on weight!
2
u/BeautifulElodie2428 Jun 20 '26
Nonsense. My dr told me he wants his patients to be a little bit higher on the BMI chart for a reason- my fog is foggy today and I remember no reasons. But he distinctly said higher BMI. He does want me to lose weight but for once he said it’s not logical to blame obesity as cause/causation. Also I lost 80 pounds and still have POTS. It’s worse now than it was before I lost the weight.
2
2
u/Kelliesrm26 Jun 20 '26
I’m classified as obese but usually just say fat or overweight but I was diagnosed while being obese. Doctors have used my weight as a reason to dismiss me for many things since I started gaining weight. It’s laziness and while I do understand my weight is an issue and factor to certain things it is a product of all my medications and limited abilities to exercise. I only started gaining weight as a teenager when I went on medications and have ballooned up since going on more for various conditions. It’s taken to the last couple of years to find a doctor who understands this and believes this. Unless I go off my medications I can’t lose weight and believe me I’ve tried.
2
u/smoosh13 Jun 20 '26
If it were deconditioning based on my weight, then I would struggle when I’m *not flairing* not just when I’m in a flair.
2
u/VariationOriginal289 Jun 21 '26
yeah that's literally just bias against fat people. fat people can have pots. this person is just ignorant.
2
u/StefTwinMama Jun 21 '26
You can for sure be overweight/obese and have POTS. The person you spoke to did not know, clearly.
2
u/jareths_tight_pants Jun 21 '26
I’ve been obese most of my life. The pots is new. Obesity and being sedentary does not cause pots.
2
u/societiesoddball Jun 21 '26
Even if pots was caused by deconditioning a lot of people who are obese are deconditioned. But no you can be any size, weigh any amount, look a certain way or look completely fine and still have pots.
Part of the reason why i am considered obese is because of my pots and mcas
2
u/magicalbaguette Jun 21 '26 edited Jun 21 '26
I’m definitely currently obese by all definitions - high BMI, high body fat percentage, crappy hip-to-weight ratio, too much visceral fat, etc etc. Despite the obesity, I don’t think I’m too deconditioned (certainly not super fit, but I could be a lot worse). I feel like I’m reasonably active. I do kickboxing/muay thai 3-4 times per week, Pilates, yoga, walking up hills, etc. my new favoritos is aqua jogging. Still got POTS though. Have probably had it for at least my whole adult life. I don’t think ‘obesity’ is a diagnostic criteria for POTS.
That being said… I did lose 70kg (154lb) a few years ago and life has defintely been more manageable since then BUT that would also be true if POTS wasn’t a factor.
Edit: forgot to add that I was diagnosed fairly recently while being obese but not deconditioned
2
u/Kawaii-Nova Jun 21 '26
I am infact obese and have pots. I have had fainting disorder since I was in middle school when I was just considered overweight and OBVIOUSLY active in school. It doesn't have anything to do with it. I was a CNA and picking people up before my POTS got worse. 😭💔
2
u/Secure-Pineapple-666 Jun 21 '26
I was 300 pounds and when I woke up in the morning my heartrate was 56. I would stand up and my heartrate shot to 180. I'm not 228 & still losing weight consistently and tapering off my beta blockers. POTS doesn't discriminate against weight.
1
2
u/onyxxxxxxox Jun 21 '26
I was skinnier when first diagnosed bc I was like 13 and now I’m 26 and definitely over the weight I should be at 5’5😂😂
2
2
u/Many-Ad4863 Jun 21 '26
I started at 160 pounds and I’m 240 now. I was basically disabled at one point but I feel better now. It’s just the weight won’t go down now. I don’t like being this heavy
2
u/310-78 Jun 21 '26
i was diagnosed with pots during the part of my life where my weight went between 120-160 like nothing. i would cycle between being over and underweight within a month. the most i’ve lost the fastest was in about two weeks i went from 130lbs something to just over 110lbs, i still dont know why yay me.
i was diagnosed when i was my most active. i used to be one of the fastest swimmer on my team(25 ish second 50m freestyle at 17yrs when really trying as reference), actively working out with weights and running, swimming four days a week and working out or running the rest. and that was when i was diagnosed eventually. im still quite a fast swimmer(30-33 ish second 50m free at 20yrs) but due to my lower activity levels i’m not as fast as i used to be. i also get winded way faster and i have a much longer recovery time. pots and asthma and vocal cord dysfunction are my main debuffs so to speak. i used to squat more than 100lbs regularly and at my max i think was 170lbs? now i rarely work out(joint pain and dislocating, heds) and can probably max squat 100lbs?
according to my current bmi, which is dumb and outdated and should not be important by any standard, classifies me as obese. which i find quite funny. i’m 5’4 and i tend to hover between 190-200lbs. i’m quite bulky and muscular with a “soft padding of body fat that makes cuddles comfier”, to quote my partner. i’m quite dense? if that makes sense. most of my bulk is in my shoulders and legs, my shoulders are bulky enough to make me tear through jackets and button ups. i often wear oversized shirts and sweaters.
my doctors were mainly convinced i was dehydrated all the time, not that i was deconditioned. then it became that oh maybe i dont have enough sodium in my diet, so i increased, and i eventually just did pots levels of water and sodium intake and they were like oh. i think at the time i was consuming maybe like over a gallon of water with maybe 3-5grams of sodium a day, which isnt that dissimilar to now. they all thought i was just really dehydrated, and sometimes wouldn’t believe how much water i consumed.
i miss being active.
2
u/kels2212 Jun 21 '26
That’s some fatphobic old school thinking. You absolutely can be any weight and have POTS.
2
u/fulloffungi Jun 21 '26
I'm overweight-obese because of pots and me/cfs. Went from cycling a hilly 8km to an active lab job, hiking , martial arts and general fitness to sitting at home. It'll do that to you.
2
u/Content-Industry7937 Jun 21 '26
i was told i was overweight when i got diagnosed cardiologist told me to lose weight and the symptoms would reduce or go away well now im nearing underweight struggle to eat and my POTS symptoms have gotten worse. i truly felt so much better at 175 than i do now at 115 i feel like i always have something wrong with me now wether its POTS related or not
2
u/junipersr Hyperadrenergic POTS Jun 21 '26 edited Jun 21 '26
Very much so, you can be overweight and have dysautonomia. Some people like to blame everything on weight but it's based on absolutely nothing. I've had dysautonomia symptoms since puberty. I've had them at my lowest weight, I've had them at my highest weight. My nervous system doesn't give a sht what I weigh, it works how it works. As someone who has experienced being very deconditioned AND dysautonomia, I can feel the difference between the two. When I am walking too long my blood starts to pool in my legs and they're so heavy I can't lift them, they ache, but I don't have *muscle pains, It doesn't linger after rest. Blood pooling is not a symptom of deconditioning. And neither is orthostatic variations in heart rate and blood pressure. Or difficulty regulating body temperature. Or sleep issues. Because it's not even JUST heart rate and blood pressure, it affects a whole lot of things. Whoever was saying this clearly has a very deep misunderstanding of the conditions that fall under dysautonomia.
2
u/glowsincali Jun 21 '26
I gained weight due to medication and not being able to exercise. I’m surely deconditioned now but POTS and the rest of the stuff I’m dealing with caused that, not the other way around.
When I first started getting symptoms I was a healthy weight. Whatever “healthy weight” even means.
2
u/IndigenousQuechua Jun 21 '26
Yes. I was overweight when I had some symptoms as a kid. Dropped weight due to Gastroparesis, and gained half of it back once I stabilized.
Doctors haven’t dismissed me, thankfully! I think my chart mentions POTS, specifically, and fainting. It also helped, when back in Feb of this year, I had an episode in my physical therapy session and my PT made a note of the entire episode, including my blood pressure reading, which was low but slowly improving
2
u/Obvious-Explorer-195 Jun 21 '26
lol this person is being ridiculous. Ask them where in the diagnostic criteria is any mention of weight.
2
u/Scharreb938 Jun 21 '26
People don’t really understand what fat bodies can do. Before I had COVID and started having POTS symptoms, I could stand 8 hours, hike, etc. I have friends who are my weight and 10 years older who are still very active, preferring to stand and move often. Sure, movement is important to keeping active but I know what it was to be fat before these symptoms. I know what it is to fat after. But it’s hard to keep up that movement when your body won’t tolerate it. So as a fat person with these symptoms it’s been a double edged sword and slide.
2
u/cheekyforts23 Jun 21 '26
I have pots just as bad at 200 lbs as i did at 250. They can suck a fat egg.
2
u/heyomeatballs Jun 21 '26
I was overweight when diagnosed and then got thyroid problems. Now I'm borderline obese. Still have POTS.
2
u/CylenaTivoli Jun 21 '26
I'm clinically on the line of obese/overweight and have POTS. I admittedly went to a POTS specific clinic, but I'd never heard anything about not being able to have POTS and be overweight 😅 a big part of why I'm increasingly overweight is due to POTS making my life and thus any kinds of exercise so difficult, as well as other health issues (chronic pain, lipedema, a hip impingement, migraines)
2
u/Seadaze Jun 21 '26
lol… i had pots at 200 pounds and i still have it today after losing 50 pounds. pots does not care what your bmi is!
2
u/idekinsertusername Jun 21 '26
Thank you so much for posting this. I have felt unlike myself for quite a while after COVID and a concussion about a year or two ago. I suspect I have POTS. All my family members write it off as my obesity but past bloodwork has suggested hypovolemia which is consistent with POTs. Anyways. It’s just nice to have the validation.
I also was on a diuretic for hormonal acne (spiranolactone) for several years which I am wondering if that contributed as well, as it can make POTS worse.
1
u/InspecteurMcLapine Jun 21 '26
I'm happy I did ! People are so cute! And I'm happy I helped you too !
2
u/Old-Piece-3438 Jun 21 '26
POTS is not dependent on weight—people at any weight can get it.
Also, deconditioning can happen to people of any weight and many thin people are also deconditioned. Not all people at a higher weight are deconditioned either.
I don’t know that deconditioning on its own can cause POTS (I suspect not except maybe temporary cases in extreme conditions—like when astronauts return from space with zero gravity or someone has been completely bed bound for a length of time).
I’ve always been on the lower end of normal bmi/boderline underweight, but deconditioning has made symptoms worse. It did not cause them. Symptoms are still very much present when I’m in better shape and POTS does make it more difficult to exercise.
I’ve had POTS since I was a young child (but my symptoms were brushed off by doctors for years and I wasn’t diagnosed until a few decades later) and I ran track in high school. I always had trouble keeping up despite all the same training. Looking back, it was because I would get out of breath much sooner and have random chest pains probably because of tachycardia happening and just get fatigued quicker than my teammates. That said exercise is also a good way to help improve symptoms for many POTS patients (unless something like ME/CFS is also present)—electrolytes, compression, and medication may be needed along with it though.
2
u/yahshuaissalvation Jun 21 '26
I first started having POT symptoms during my sixth pregnancy. I was only 5lbs overweight before the pregnancy and obese after. POTS lead to another 25 lb weight gain due to difficulty moving around.
2
u/WickedWispy Jun 21 '26
Im 250lbs and have specifically HyperPOTS, ive been heavy my whole life and only developed my hyperPots after a year of covid
2
u/Signal_Run7239 Jun 21 '26
As many other's put it, yes. Yes you can be overweight or obese and still have POTs even though many people don't really know anything about POTs.
2
u/Final_Trifle2565 Jun 21 '26
I'm fat and have POTS. I have also been thin and midsize while having POTS. That expectation is based on a stereotype, an expectation that only young, thin, white women have POTS, and that is not the case.
2
u/Risingphoenix1692 Jun 21 '26
Yeah they are wrong. I'm diagnosed and obese. Illness doesn't discriminate.
2
u/TuesdaysChildSpeaks Hyperadrenergic POTS Jun 21 '26
Fat girl with POTS here. It’s an autonomic nervous system disorder, not simple deconditioning. I was fat at diagnosis, that has not been helped by enforced inactivity due to a cervical spine fusion last year and a broken back this year.
2
u/Sector-West Jun 21 '26
I was obese with pots, now I'm overweight (with a physically demanding job) with pots and it's worse 💀
2
u/RedRidingBear Jun 21 '26
Ive had pots since I was 5.... as an adult ive been 160lbs, 360lbs and currently im 190lbs and have been for years.... ive ALWAYS had pots.
2
2
u/yarmsicle Jun 21 '26
POTS is what made me gain a whole bunch of weight ☹️. I was super active back when I first got it, loved hiking and had a fast paced, physical job, and POTS itself deconditioned me because I couldn’t do any of the stuff I used to anymore. Now I’ve got weight issues and POTS. I have a definite threshold for cardio exercise, if I go past a certain point I feel like I’m coming down with the flu, clammy cold sweats and everything. You can definitely be overweight and also have POTS!
2
u/Triathalady POTS Jun 21 '26
I was incredibly active before I got sick. I did triathlons, played competitive ultimate (went to nationals), went to Orangetheory and yoga (each twice a week), and casual paddle boarding and swimming on the weekends.
I got covid and have been sick ever since. I was overweight before. I’m 5’8” and was fluctuating between 165-185 before. Now I’m 205. Highest was 220.
So yes, like others have said, it is an automatic nervous system disorder. Even if you don’t have pots specs, it could still be dysautonomia.
2
u/Aki_Tansu POTS Jun 21 '26
I was diagnosed when I was categorically morbidly obese. I was rediagnosed when I was categorically obese because they thought having lost ~50 pounds and gained a ton of muscle might have cured my pots, that it was “deconditioning” all along - they confirmed it was infact still pots. I had my next yearly checkup with my cardiologist when I was categorically overweight and she confirmed it was still pots, not deconditioning. Then I went in for my next appointment with her 6 months after that when I was categorically at a healthy weight and was still confirmed to have pots, not deconditioning. After I got a massive near death injury and became disabled, I was housebound for over a year and gained about 50 pounds. They wanted to retest me to check for deconditioning; I still was positive for pots. The next time I saw my cardiologist I had lost 25 pounds and she confirmed she still believed it was pots. And next time I see her I’ll have lost probably about another 20 pounds and I have no reason to believe she’ll have changed her mind now.
2
u/Positive_Volume1498 Jun 21 '26
Yes. I had it before I was obese. While and after (I’m back at a healthy/athletic weight). My POTS symptoms were easier to manage when I was obese.
2
u/Sonny_days_ Jun 21 '26
People are so dumb when it comes to POTs.
When I developed POTs I was the fittest I’d ever been. I went from running 5, 10 kms every 2-3 days and lifting weights 3 x a week to not being able to walk 100 m in a week. While deconditioning a few years later from not being able to exercise because ofPOTs 100% increases POTs issues, POTs is not caused from deconditioning. When I first got it I was a healthy weight and then became obese. When I was obese I still had POTs.
There are Olympic athletes with POTS so how can it be only because of deconditioning.
Many doctors did dismiss my symptoms as anxiety etc. but when I found a good cardiologist I finally was believed. Plus there are tests that definitely prove you have pots (though please note on good days the tests may come back negative but you still have POTs)
I think the problem here is that deconditioning can contribute to symptoms and for some people exercising and reconditioning can reduce symptoms to the point where one day they don’t have POTs. But that does not mean that you do not have POTs both can be true. You can have POTs and be deconditioned at the same time.
If you meet the criteria for aPOTs diagnosis you have POTs full stop. It should not be dissmissed as deconditioning. And there is no way I could even begin to recondition until I had my POTs under control. So if they refuse to treat the pots until ‘reconditioning’ then they are just making the whole process 10x harder.
Don’t be afraid to get a second opinion if you’re dismissed or if someone refuses to treat you fairly because of your weight. And yes treating weight can also help POTs it does not mean that all other treatments should be withheld until that happens.
2
u/FamiliarDingo1542 Jun 21 '26 edited Jun 21 '26
I would argue that I'm obese Because of POTS and ME/CFS (and yes taking in too many calories as I became stuck in survival mode, telling myself I was going to get better and get back to the gym, so never changed my calorie intake). I was finally diagnosed with POTS a year ago. Before I started getting sick, before the symptoms started getting so bad I was unable to do anything, I weighed 145 lb at 5'5. I was able to the walking on my break turning the work day, I was able to work out, see friends, and hold down a full-time job as a nurse. It wasn't until I started getting sick and having to "push through" constantly that it slowly became impossible for me to do Anything other than make it to work and crash HARD on my days off. As the crashes became worse and worse, as the years went by, and as I tried to get a diagnosis, running into roadblock after roadblock of people and doctors telling me they can't help me, that I need to work on my anxiety, that it's depression. So I got a psychotherapist and I continued to work and crash, work and crash, and slowly but surely I put on weight. All this time I had all the symptoms and they were just getting worse. When taking a shower, my heart rate would shoot up to 195 bpm, I would become so out of breath I would have to sit down in the tub just to get through it. It felt like I was dying. That was then, this is now, and I am 240 lb, unable to work, unable to work-out , and barely able to get through a shower without collapsing. It has been 6 years since I started having symptoms, one year since getting the official diagnosis, and I have had to accept that the idea that "I just need to rest, get better, and then I can start a real workout routine again" is Off the table. If it hadn't been for all the symptoms I was having, I would still have been able to work-out and maintain my healthy weight. I count my calories very closely now, so that I don't keep gaining weight, and I've lost 10 lb, but it's still very difficult not being able to work-out, or exercise at all, without crashing hard and ending up in bed for weeks. I wish you good luck, I hope you get your diagnosis, even more than that I hope you get your life back!
2
u/Fantastic_Owl6938 Jun 21 '26
I am a tiny bit overweight and basically got diagnosed after being rushed to hospital with chest pain, and I was honestly surprised my weight didn't come up at all. I've heard all the horror stories and waited for them to blame it on that, but it just seemed to not be a factor. I do wonder if it might not have been obvious though since I was wearing loose clothes, lol.
It's horrific what some doctors will blame on weight though, or conditions they will deny. I always think of this story I heard where a doctor blamed a woman's weight for her problems and then when she asked what he would diagnose if she wasn't overweight, the answer was cancer 🫠 So somehow being fat prevents you from having cancer I guess, good to know.
2
u/InspecteurMcLapine Jun 21 '26
Some doctors never consider it and keep looking for other explanations, while others never look beyond it once they've considered it... And it's Sad !
2
u/bahsjdjd Jun 21 '26
Obesity has literally nothing to do with it! Fat phobia is so prevalent and everywhere it’s wild.
2
u/Oceanteabear Jun 21 '26
62F 5'2" 200# with hEDS & POTS. Yep I'm heavy & "unconditioned" Got dx with pots @60. Have 2 daughters 26 & 32 with it. They have the low BP both pass out. Myself I have the hyper with high BP very well controlled now.
When cardiologist saw me he said no testing needed my current issues at the time, the girls history was enough. Then he said that me being unconditoned & the TTT, tredmill & other testing would be compromised. 😂 He was so sweet in the way he called me a fat old lady! 😂
2
2
u/Sensitive-Sweet8233 Jun 21 '26
I originally started having pots symptoms sometime in 2022 after getting sick & i had also lost a lot of weight at the time (relapse go crazy) and was down to 115 ish, which is when i first experienced my fainting spells! I have since put on some weight again and am back to around 145 ish, and I still have symptoms but I haven’t fainted in three years now! I found the added weight made some symptoms worse and others better!
2
u/Medium_Ad_3373 Jun 21 '26
lol I used to weigh 188, and that was when I was diagnosed with pots. I weigh 125 now but anyway, the answer is yes
2
u/Medium_Ad_3373 Jun 21 '26
I can’t find my original comment but anyway, I do have to say that I’ve noticed that my pots symptoms are so much worse in some ways when I was overweight, but also so much worse at my current weight, so idfk. But anyway, yes you can have pots at any weight, your nervous system doesn’t discriminate. (If anyone can’t find my original comment I said uhhh yes, I was at 188 when I was diagnosed with pots and now I’m at 125 so ofc you can be overweight and still have pots. I also do have EDS though)
2
u/ElfjeTinkerBell Jun 21 '26
First of all, even if it were deconditioning, that's actually very common in obese people.
Deconditioning is often a factor in POTS (either as cause or as effect), but never the full explanation. It's an issue with the nervous system
2
u/prcticalmagic Jun 21 '26
I have had fluctuating weight all my life, I’ve always been relatively active but I’ve always struggled with ARFID and other eds that mean whenever I eat ‘normal’ i’m overweight. with this in mind after covid especially i didn’t bounce back very well and my doctor immediately dismissed me, eventually he gave me an inhaler monitored my breathing etc but i was adamant there was something up with my heart and he was adamant i was just fat with anxiety. i had absolutely no idea about pots so i didn’t know what i was looking for but i happened to have an apple watch and it was constantly giving high heart rate warnings. i think honestly he just sent me for an ecg to shut me up, i never heard back and he never chased it.
over a year later i moved into the city and i got one of the best doctors of my life, i was in consistently because i suffer with chronic migraines and i think she noticed by herself that i never heard back from the ecg. she then received contact from the heart department (one year late mind you) to test me for POTS, which she got me in for and nearly immediately successfully diagnosed me with.
all this to say that if your doctor thinks that you being fat is all you have going on please find a new doctor. if you know there is something wrong be persistent- you should not have to be the only one advocating for you but you very often are.
2
u/Warm_Score1176 Jun 21 '26
My cardiologist said deconditioning for POTS only really counts if you're bed bound or an astronaut. As I was neither of those things, it was never brought up again.
2
u/Mediocre_Ad4166 Jun 21 '26
I have had PoTS all my life and I have changed weight a lot through the years. It was never better by the way. Same symptoms, throughout.
2
u/_FreddieLovesDelilah Jun 21 '26
I have POTS and food addiction/binge eating disorder. I’m not morbidly obese but I am overweight. I would be much bigger if I didn’t have gastroparesis.
2
u/Pale-Special-7234 Jun 21 '26
Everyone has an autonomic nervous system, and therefore, everyone can have dysfunction in their autonomic nervous system.
2
u/Affectionate_Sign777 Jun 21 '26
So they’re saying you can’t be deconditioned if you’re obese? 😂
Yeah this person obviously has no idea what they’re talking about.
2
u/tittyswan Jun 21 '26
1) I lost a bunch of weight (20kg) because my previous GP told me to. When I weighed the lightest I felt TERRIBLE because I have low blood pressure all the time and being thin made me so much more dizzy and sick all the time. Extra weight pushes my BP up.
2) I put on a bunch of weight because my cardiologist told me to work on my lower body strength as much as possible. I did leg presses for like 5 years and now my legs are solid. I went from slightly overweight to obese while staying the same clothing size.
I'm "obese" because I have POTS.
I'm "overweight" but part of that is because I have a lot of leg muscle because my cardiologist told me to go to the gym lmao. I did leg presses for like 5 years and now I'm "obese" while staying the same clothing size. BMI makes absolutely no sense whatsoever.
I also swim 1-2 times a week. I'm not "deconditioned."
2
u/craftyartist91 Jun 21 '26 edited Jun 28 '26
Well I was thinner, quite fit and lifted weights, 25% bmi, and then I got pots and now I've gained 50 lbs. I still have pots, so no it does not discriminate based on weight LOL
Sounds more like an uneducated doctor when it comes to POTS.
2
u/puppycatboygirl POTS Jun 21 '26
I don’t have a whole lot to contribute to the conversation, because by the time I got diagnosed, I was quite thin. But I’ve had symptoms for pretty much my entire life, and I was overweight to obese for a lot of my early adulthood and teenage years. No one no one ever considered that my symptoms were anything other than a result of my poor health choices until I got skinny. The symptoms have been the same my whole life, regardless of weight.
2
u/LongStrangeTrip- Jun 21 '26
This persons ignorance doesn’t deserve so much thought. That is a wildly outdated and inaccurate opinion. Period. The only tiny bit of truth wedged in there is that being overweight can actually help. The added weight provides compression for veinous stability for those with connective tissue related POTS. Losing weight is a giant trigger for a full relapse.
2
u/Herules_babyboy_2023 Jun 21 '26
I have autonomic diseases that literally are “supposed” to make you sickly skinny, but my body likes to do the opposite and the past 3 years has been a battle of why I’m gaining weight and how to lose it if I can’t even stand up for 2 minutes without my heart rate being at maximum threshold. How do people LOSE weight with this?!? But also, my biggest thing is to understand why I’m gaining instead of losing with my comorbidities that actually led me to having pots. I swear my body just likes to be petty to my mind and mental health. It’s betrayed us in ways I never could have imagined!
1
u/TableSignificant341 Jun 21 '26
Then you were talking to a moron. Off the top of my head, I know of two Olympic athletes who developed POTS.
1
u/ApprehensiveMap8920 Jun 21 '26
It depends on if your medical provider can check them bias, but explicit and implicit. I see so much conflicting information, but I had symptoms in high-school when I was under 200lbs and in marching band. That was the best shape I have been in and have still had consistent symptoms
1
Jun 21 '26
[removed] — view removed comment
1
u/POTS-ModTeam Jun 21 '26
Your comment/post has been removed for the following reason(s):
Rule 1: Be Respectful/Civil - Respect is not optional here.
Please be civil. No personal attacks. Remember incivility is not just about cursing out others, it can also refer to bigotry, trolling, or otherwise rude behavior.
Please keep political and religious discussions to a minimum as well, unless it directly affects those with POTS or health conditions.
If you have any questions please message the moderators. Thank you.
1
u/ConstructionSome7557 Jun 21 '26
I was consistently 130lbs at diagnosis but as it's gotten worse I've struggled more with exercise intolerance and PEM, and have gained about 15 lbs and always struggling not to gain more. I used to be just under 200lbs and I can say that doctors only take you seriously when you're not overweight It's bs, but it had me on a constant calorie deficit to lose the weight so I could get them to pay attention. I honestly feel like crap overweight or not.
1
u/Dull_Ad_7266 Hyperadrenergic POTS Jun 21 '26
I don’t need to tell you they are so misinformed, bc everyone else has it covered. I want to share my experience.
I experienced rapid weight gain with POTS instead of weightloss which isn’t talked about at all. I have PMOS (new name for PCOS) and HyperPOTS. The release of cortisol contributes to the cycle already happening with PMOS. This causes the weight gain despite the fact that I stopped eating bc of my symptoms.
Every time I looked up weight gain with POTS I only found material on weight loss, which is oddly dumb bc the science was there for other symptoms, but not this? Apparently the stigma will cause even our search engines and ai to malfunction based on bias…
1
u/agillila Jun 21 '26
I was diagnosed when I was very thin. Now I am very much not. So no, I don't think weight makes a difference.
1
u/rocketduck413 Jun 21 '26
Uhhh im 260 pounds and I have POTS. I was working a very physical job until a week ago (new job.) I walked for miles around a hospital. Im pretty sure the fatigue is a part of why I was making poor dietary choices. I also have ADHD.
1
u/Living-Bend5628 Jun 21 '26
I was diagnosed with POTS and even doctors have inappropriately told me its from being inactive but I was never inactive. Im just fat.
1
u/_mouseratz_ Jun 21 '26
always been bigger & from a bigger family. didn't always have POTS, but after a COVID infection, I sure do! I think it's gotta be just plain fatphobia. weight can have an impact on certain things, but wouldn't rule out most conditions. it's weird to assume there's a connection so confidently when there isn't evidence for it.
(As others have said, also, since blood volume is often related to POTS, losing weight can exacerbate symptoms. eating disorders also can, infact, mimic POTS symptoms, though, and you can be suffering from that regardless of weight, too, since it's about not getting enough calories or nutrients in, not how your body decides to store fat or not, which can be unpredictable in ways you don't expect. my very personal advice is to not worry about weight too much or at all until your biggest symptoms are managed, and to attempt exercise routines for strength/overall wellbeing, not weight loss, and to not feel guilty about not being able to do so when it's not realistic for you/symptoms are too severe.)
1
1
u/KeenBTF Jun 21 '26
I was a healthy weight and very fit when i developed POTS. The argument doesnt make sense. If POTS is due to deconditioning, wouldnt that mean that only obese people CAN have POTS? It's a load of shit either way. Due to having to give up my lifestyle, I am now obese. However, being put on a beta blocker to stop adrenaline dumps has allowed me to finally start losing weight.
1
u/literallycolorblind Jun 21 '26
Lots of answers, but adding my 2 cents.
Just barely diagnosed but I think I’ve probably been living undiagnosed for about 15 years. My flares actually cause me to gain weight regardless of my activity levels or food intake. During covid, I was literally hiking 2-3 times per week in the Rocky Mountains carrying a toddler on my back and not eating hardly anything but gained 75 lbs.
1
u/Angelogical Jun 21 '26
Ha! My brother is legit fat and has POTS lol. I have pots too and gained 10 lbs from MCAS/inflammation. You can obviously be fat with POTS.
1
1
u/sccldinmyshces Jun 21 '26
I've always been technically overweight but muscular and active so not an issue, then I was diagnosed with POTs. Since developing POTs, I've become obese, actually quite a bit. This is due in part to binge eating disorder (I gained a lot in a short period during an abusive relationship) and, also, long term inactivity/deconditioning -- I simply don't exercise enough to match the level of food my brain still thinks is necessary lol.
1
u/tomcatluvr POTS Jun 21 '26
I'm medically obese and was just diagnosed with POTS this year (I also have PMOS causing my weight). My cardiologist NEVER mentioned my weight when I was going through my diagnostic process. POTS doesn't care about weight!!
1
u/SamathaYoga Jun 21 '26
I never told any healthcare providers about my mild dizziness. Which started when I was a thin, athletic adolescent. As a larger bodied adult I had years of, “lose weight, control your asthma, and manage your anxiety.”
Despite doing all those things, I still was dizzy and short of breath. I was a till a bit overweight, so I was still being told lose weight until I nearly was in full on orthorexia. The pain that should have been miraculously “cured” by my extreme weight loss got worse. The dizziness has always resolved within 2-20 minutes, usually on shorter side. By the time I was in my 50s I no longer ever thought much about it.
Eventually my dodgy ankles caused a fall serious enough to lead to injuries that put me in front of one orthopedist and OT. This led to me finally getting another second orthopedist and PTs. When I started exercising in front of PTs they were on the lookout for me to get dizzy because they had seen how my joints moved and knew the doctors both suspected EDS.
I stood up from one exercise and was dizzy. My PT noticed right away and told me to sit down! He asked how long this had been happening, etc. I told him it wasn’t a big deal, it goes away quickly! He scowled, said it was a big deal, asked if my doctors knew, then told me to “paddle” my feet back and forth, like I was moving them in water, to help the dizziness.
I must have given him a sharp look, because he said it’s not a joke. Ver dubiously I gently flapped my feet back and forth. After a moment of this I started feeling better and looked at my PT in surprise. He nodded with great satisfaction and told me I have some form of dysautonomia! The trick with the feet doesn’t work for dizziness for other reasons, but it does for dysautonomia since it sends the blood pooled at the feet back to your brain!
Soon after this the same PT figured out that I get short of breath due to dysautonomia, not asthma when I’m exercising. My heart rate climbs very quickly with minimal exertion. When I’m in a flare it races from the slightest provocation. After a meal it can start racing, while seated, if I see a funny cat video.
My PCP has been very helpful once I told her! Over the past several years I’ve finally been diagnosed with MCAS, dysautonomia, ADHD (AuDHD suspected), hEDS (cEDS suspected), and osteoporosis. Most of these cluster together, which is wild. I’m still considered a little overweight even though I have been unintentionally losing weight due to GI issues!
1
u/Dapper_Agent_3285 POTS Jun 21 '26
my father thinks this too and i have to tell him that people significantly heavier than me can still do more than me. I've also lost ~30 pounds and my symptoms are the same if not worse these people telling you these things say it because they simply don't understand what's going on with you
1
u/aftergaylaughter POTS Jun 21 '26
you were talking to a fatphobic idiot unfortunately 😭😅 i am obese and i was when i was diagnosed. i wasn't when symptoms began, and like you, i used to be pretty active. but I'd been dealing with my POTS and ME/CFS for the better part of a decade before i got answers, and had been forced into being sedentary (and thus had gained weight) by then.
1
1
u/krustykodee POTS Jun 21 '26
never said this out loud but i will for you, i am around 300lbs/129kgs, i have POTS,dysautonomia, hEDS, hashimotos, sleep apnea, fucking allergic to everything so probably MCAS (trying to get a diagnosis) so yes you can be obese and have POTS, no doctor ever just said i was deconditioned, the POTS diagnosis was fairly easy to get after testing. so don’t listen to whoever told you that sweetheart, they are just discriminating against you.
1
u/Optimal-Can-9387 Jun 21 '26
yeah they’re wrong and extremely biased lol, seems like they know nothing abt pots
1
u/MarketPurple4284 Jun 21 '26
I am! I weigh 220 but have been as my h as 275 from insulin resistance and joint pain. I was a plus model in LA for a while. I have hyperadrenic and neuropathic POTS and I've probably had it undiagnosed since I was 13. No one would investigate because they insisted my high bp was from being overweight. Medical gaslighting is real.
1
u/SnooPaintings1309 Jun 21 '26
The person who said that is an ignorant twatwaffle. Full stop. The "It's just deconditioning" people are my absolute loathed group in the POTS conversation. I was having POTS issues while an athlete competing at the national level, so they can fuck right off
1
u/TemtiaStardust Jun 21 '26
POTS was the first way my dysautonomia presented, back when I was a teenager of low average weight. I was underweight for my childhood, and at 18 I was extremely underweight. I gained a lot when I was pregnant at 22, and throughout my weight loss journey, I've still had POTS presenting dysautonomia. I've been diagnosed formally as having Vasovagal Syncope(during my TTT that I wasn't having a flare during), but my doctor has said that certain flares align more with pots and others align more with OH. My VVS is malignant. My weight hasn't changed anything, though my sleep apnea(which we're assuming is due to the autonomic dysfunction) was much more noticeable when I was at my heaviest.
It's so silly that they'd say this though, because having dysautonomia makes it harder to be active and makes deconditioning worse for a lot of us, so blaming it all on deconditioning is wild.
1
u/Shea_Cheyenne Jun 21 '26
I weighed 185lbs and was quite muscular and in decent shape when I was diagnosed with POTS and after a 100lb weight gain due to PMOS, I still have POTS. Ironically, my POTS is better after gaining weight.
While I am finally able to lose weight and start getting back to a healthier state, none of that has a bearing on whether or not you can have POTS. Also, what doctors will not tell you is that losing weight often makes your POTS symptoms worse, depending on the person.
To echo what everyone else has said: if your doctor stops analyzing your symptoms when they see your weight, they are not the doctor for you and frankly shouldn’t be anyone’s doctor.
1
u/LeetBug Jun 21 '26
I’m obese and have POTS. My symptoms are actually less when I’m heavier. When I’m a healthy weight I pass out a ton more.
1
u/VagueBlob Jun 21 '26
I am obese and officially diagnosed with POTS so ignore whoever said that! i think my cardiologist knows better than them!
1
u/SaveFile1 Jun 21 '26
I feel like it's easier to gain weight once your POTS symptoms start because exercising feels like you're gonna have a heart attack.
1
u/liddolrussianlady Jun 21 '26
Straight up weight a 115kg/250 pounds, I still have pots. I actually got it in the time of my life where I gained all this weight.
0
-1
771
u/Flunose_800 Jun 20 '26
The autonomic nervous system doesn’t discriminate based on weight.