Has POTS affected your weight?

[Pistol]

Many of us seem to experience either weight gain ( often from inability to exercise ) or weight loss ( from constant overstimulation etc ) from POTS. What is your experience?

In my case I have weight gain when in the fatigue/low exercise tolerance/low metabolism phase and weight loss when in the overstimulation/high adrenaline/restlessness phase. 

[RecipeForDisaster]

Persistent 20 percent weight loss after having been an extremely stable weight -no matter what- for 30 years or so. I was the same size since I was 12 and now I’m smaller!

[cmep37]

I have lost around 35lbs from the weight I was 15 years ago when my POTS became severe.  I didn't lose it all at once but when I'm in a flare I just seem to burn through calories.  Despite eating the same amount as usual I can easily lose 2lb a week and I find it so much harder to put weight on than it is to lose it.  I now weigh 140lbs which I think is OK for my height (I'm 5 foot 10).  

[MomtoGiuliana]

Whenever I am in a flare I lose weight.

[HCD77]

I have lost 18 lbs since my symptoms started in October 2019. It is scary weighing 118 lbs at 5’10’’. A year ago I weighed 136. I have always been thin, but I’m so concerned even seeing a dietitian. Between being a prediabetic and eating low carb smaller meals it’s so hard to put on weight. I have a good appetite and eat through the nausea, but still not gaining. I have telling my PCP since October I have unintentional weight loss which should be a huge red flag for all doctors to listen and investigate. I get so discouraged.😞

[RecipeForDisaster]

It’s amazing how no one seems alarmed about my weight loss, either. I am quite light for my height and was never overweight. I supplement calories like crazy and still don’t gain... I have no GI issues but also lost my appetite permanently about 18 months ago. I force a lot of meals anyway!

[E pots]

At the beginning two years ago I lost  20 pounds really quickly and then another 15 over a couple months at the point I was diagnosed I had already lost 25 lb. So at that point I've only fluctuated 10 pounds on 10 pounds off in between flares in a flare now just lost another 15. My mom thinks it's great and she tells me how good I look and she tells people and her friends but I've lost weight yay being well and telling her I feel like I'm dying I've overheard her on the phone telling people that I'm faking

[cmep37]

Don't worry about what anyone else thinks - if I had a pound for everyone who told me how well I looked I'd be rich!  Apart from being pale and on the thin side I look completely "normal" - it was only when I came back to live with my parents that they really understood how ill I was.  I would make a huge effort when I saw them and they knew I wasn't well enough to work but I didn't want to worry them by telling them how bad it was.  Of course they got a terrible shock when my fiance left me and I moved in with them and they realised what my life was really like.

[Nin]

My problem is I can't lose weight. I've been trying to lose weight for 5 weeks. I've dropped my calories and exercising (only 10 mins a day). Im a size 12 so not a lot to lose but can't even shift a few pounds

[misseb]

Just stumbled across this. I'm only ever able to eat such a small amount of food to keep my BP up that I struggle to keep weight on. I feel so much better when I dont eat that it's hard to get myself to. I'm a boney US size 6. 

[Guest KiminOrlando]

I can't lose weight to save my life. I gain.

[Dystasysta]

I would do anything to gain weight been thin all my life but without being able to exercise and being older thin isn’t the same as when young. So I’m an old lady now with a belly from the ibs and bloating and rest of me thin . I used to be able to tolerate ensure etc but last few years it was just too seeet . My duet is repetitive  chicken  bake potatoes and oatmeal rinse and repeat LOL 

[Pistol]

@Dystasysta                                                           

7 hours ago, Dystasysta said:

My duet is repetitive  chicken  bake potatoes and oatmeal rinse and repeat LOL 

I am 54 and have been loosing a lot of weight. I also used to have the "thin legs and barrel-belly" shape but have found that diet changes took care of that for me. A dietician told me that I should avoid raw veggies and fruit and steam them instead, avoid carbs but push protein. I too cannot tolerate Ensure etc since they make me sick, so I have found protein bars do the trick for me, I eat 1/2 a bar at a time but several times a day. I avoid sweets, and caffeine ( except for the morning joe ) and alcohol. And I am with you on the chicken and potato!!!!!! Plus - fiber and probiotics help a lot with the bloating!!!!! And yoghurt. 

[cmep37]

Don't know what I'd do without yoghurt and soup!  

[Dystasysta]

I can’t seem to eat dairy anymore so I have found yogurt alternative with coconut milk or almond milk there’s one brand called so delicious it seems not to affect me to negatively. My protein is from chicken I probably clucking don’t even know it anymore i’m not sure if my Mast Cell I was confused issues regarding what I can eat but I know my IBS has. I get confused at this point about increasing fiber eating bread but not eating weed I have found sourdough seems to be OK. As I got older he suggestions from the doctors seems to be less I know that sounds somewhat jaded but I do think that in some aspects “the thrill is gone“ trying to come up with treatment plans add a certain age unless you really Are lucky to hook up with doctors who are very interested in your specific case.I take Gastro Crom for the MCAD and the beta blocker and Norvasc for the Cardiac blood pressure situation they want me to take small Jose is just of Ativan which I do but I’m not the most compliant as those drugs scare me and with a history of being what they call idiosyncratic reactions I’ve become more leery of drugs. I can’t tolerate any pain meds so you can find me walking around with lidocaine patches for the somewhat unexplained body pain that changes places I think it’s fibromyalgia and they call it neuropathy and I think it becomes a vicious cycle you can’t exercise and then that makes you more deconditioned which makes you worse as I have found a few years ago I was doingMuch better when I was more mobile.All in any chicken recipes and suggestions for breakfast are more than welcome I can tolerate egg whites just not the eggs

[Bobannon]

On 8/28/2020 at 10:40 AM, HCD77 said:

I have lost 18 lbs since my symptoms started in October 2019. It is scary weighing 118 lbs at 5’10’’. A year ago I weighed 136. I have always been thin, but I’m so concerned even seeing a dietitian. Between being a prediabetic and eating low carb smaller meals it’s so hard to put on weight. I have a good appetite and eat through the nausea, but still not gaining. I have telling my PCP since October I have unintentional weight loss which should be a huge red flag for all doctors to listen and investigate. I get so discouraged.😞

Yikes! That is concerning. Do you have an Endocrinologist and have your thyroid hormones been within range? TSH, T3 & T4... If you’re on Metformin for prediabetes it can cause weight loss and loss of appetite in general. 

[MikeO]

Well @Pistolyou can add me to the list of mysterious weight loss - i have been 178 consistently just out of the shower for the last few years (except for a episode last summer when i spiked to 189) over the last couple of weeks i dropped to 170. I know i have been in a flare lately but past flares i never noticed a weight drop to this extent (maybe a pound or two)

Also my ILR automatically uploaded to the clinic last night so i must have broken a rule. This stuff never seems to end.