Weight Gain - what do I do?

[Knellie]

Hey everyone-

     I hate to admit it, but in the 2 and a half years since I have had POTS I have gained somewhere around fifty pounds. I really want to lose weight but I don't know what to do, and hard core exercise makes me really sick. Do you guys have any advice about this? It is really frustrating. Thanks in advance!

[Ashc]

It's really hard to lose weight when our body is less reactive to traditional ways like diets and exercises due to some factors like metabolism. I don't think there's a natural way around it though. Just be strict and patient on these two. Don't stop because you're not seeing results immediately. You'll get to your target weight soon enough.

[Pistol]

@Knellie - At one point I gained about 20 lbs since onset of POTS, before I was always underweight.  This was mostly due to careless eating habits, depression and inactivity. Due to frequent seizures and syncope I was afraid to exercise. I had severe GERD and IBS and once they treated those the pounds just landed left and right. I also developed IC, so between the GI problems and the IC I had to change my diet. For the depression ( obviously caused by living with the limitations of POTS ) I started Lexapro with great results, Diet-wise I stopped eating meals and instead eat 6-7 snacks a day, I can be filled up from a yoghurt or a banana! I try to avoid heavy carbs like pasta, white bread or sweets and load up on healthy foods like nuts, low acid fruit ( for IC a low-acid diet is needed ), lean proteins, whole grain breads ( I bake my own ) and cooked veggies. 

Exercise is a must for POTS and I have found that no matter how bad we are - there is always SOME exercise we can do. On good days I stay active by spreading chores over the course of the day, with ample rest periods in between. I also use a rowing machine at least three times a week, even if it is just for 20 reps. It is an excellent exercise for POTS since you are sitting but working the whole body at the same time. Plus they have different settings of how hard you have to work, so you can start on the lowest setting. I got mine for $ 80 on amazon and am happy with it. 

On bad days or when I am so bad that I have to stay in bed I get up every 30 minutes to maintain my orthostatic tolerance and i do leg and core strengthening exercises lying down. Even just one or two minutes three times a day can help!!!!

With this regimen I managed to loose 20 lbs in 2020. 

[JimL]

IMO, loosing weight is more of a diet than exercise thing, especially if you're older than 45-50. I lost 170lbs on keto over 16 months, went off it eventually and gained some back during the pandemic. Have to lose about 50. Went back on a few weeks ago. It works for me as carbs have never been good for unless I was doing a lot of working out. When I was young, I could do 6 days a week of weight training around an hour with 35 sets, which is a brisk pace and I wasn't lifting light and I could eat 3k calories a day and lose weight. Due do spine/neck issues, I just hike/walk now and my target caloric intake is around 2k calories a day. Generally speaking, calories in and out, but some may find certain diets work better for them than others. I am not a keto preacher, it worked for me, may not for you. You just need to figure out what you metabolic calories are and calories burned with activity and eat a little less calories. I would say as a general statement, skip simple carbs, beer and sugared pop for sure if you can. Try to eat real food instead of packaged/processed stuff. The other exercise I started doing after Christmas is the heavy bag. One of my daughters wanted it for Christmas. I use it a couple times a week. It's one of the toughest workouts I've done considering I can only do 2-3 rounds at a fairly high intensity. That's less than 10 minutes and I am done. I used to do Aikido, but can't anymore with the back issues. Boxing is a lot more exhausting.  BTW, I got my covid shot yesterday. Arm hurts a lot worse today. 

[Pistol]

22 minutes ago, JimL said:

I would say as a general statement, skip simple carbs, beer and sugared pop for sure if you can.

I agree!!! I know many people that lost a considerable amount of weight just from cutting out soda and beer!

[MTRJ75]

I've gained nearly 40 pounds over the last year and I can directly point to starting Lexapro as the starting point. I used to be able to lose and gain weight very easily. My weight was always bouncing around. Of course, I used to be able to a lot more active too. The odd thing is that I'm not even eating that much and my diet is 90% Paleo, so I can't figure out where this weight is coming from. 

[Knellie]

@Pistol - Can you tell me the name of your rowing machine? I might buy one of those. Also, for all of you who say to cut out soda, do you think that diet sodas (like Coke zero or diet Coke) still hurt you or do you think those are okay?

[MTRJ75]

Diet sodas are just as bad, if not worse, than regular soda. They may not make you gain the same amount of weight, but the ingredients are nearly poison. Can you transition to something like green tea instead? 

[Pistol]

Try bubbly water with some juice in it. 

[merkat30]

I have found I have put on lot weight inactivity deffo a culprit with all my illness getting worse. I have little foot pedal to try lose some sat down I love say I changed.my diet but I have very few staple foods am aloud with my mast cell I try to go for healthier versions made me lot more  unwell even no tasted alot better .

[Crazy Tired]

Low carb

[cmep37]

I have the opposite problem - I really struggle to keep weight on.  I lost 5 pounds with Covid and my BMI is now 19 again.  I retch and vomit most days - I have tried eating smaller meals more often , it makes no difference, I just feel sick more often.  My HR is 140+ just standing still and easily hits 160+ when I exercise which burns loads of calories so although I seem to eat a reasonable amount of food I find it really hard to gain weight.  The only way I can put weight on is to eat rubbish (chocolate, ice cream, sweets) which I don't like doing as I try to limit my sugar intake. 

[Pistol]

@cmep37 - I have lost a bit of weight last year and can't seem to be able to put it back on. I eat protein bars, like CLIF or KIND bars. They are nutritious and fill you up but are not too much to eat at once. 

[cmep37]

I'll have a look out for those thanks Pistol - my GP gave me these high-calorie protein drinks which are utterly vile so any alternative to those would be good.  I'm not great with thick drinks (I'm the only person I know who eats Hot chocolate with a spoon like soup otherwise I choke on it!) and these taste so synthetic and sweet that I just couldn't get them down.

[JimL]

2 hours ago, cmep37 said:

I'll have a look out for those thanks Pistol - my GP gave me these high-calorie protein drinks which are utterly vile so any alternative to those would be good.  I'm not great with thick drinks (I'm the only person I know who eats Hot chocolate with a spoon like soup otherwise I choke on it!) and these taste so synthetic and sweet that I just couldn't get them down.

There are low carb protein powders. Back in the day I used to use Optimum Nutrition Gold. Figure on .6g protein intake per lb of lean body mass as a minimum for someone not so active. If you have a fast metabolism, you'll have to increase calories a bit. The thing is, protein and carbs have the same calorie value. Fat is over 2x as much. Maybe increase good fats a bit. For me, carbs are the enemy, alcohol doesn't help either. 

[yogini]

I agree it is hard to lose weight with dysautonomia, when we feel better resting and not being active.  When exercise is more limited, it's even more important to manage your diet.  I've found a bunch of things that I like to eat that are a combo of lean meat, veggies, low in fat and I alternate between those recipes.  I try to avoid processed, packaged and fried foods and don't keep any of those at home.  A bag of mnms disappears too quickly, so better to just not have it around.    I'm about 10 lbs overweight and I'll bet if I was more careful when I got takeout that would go away.

[Nelson G.]

Horizontal activity is great for us,  there is no need to do hard exercise at all!   If you can't get help from your cardiologist and you don't have any heart problem to be cautious of,  DysautonomiaInternational has an exercise program on their website that is very gentle.

Lowering carbs help.  Eat veggies and protein 😊 

[CallieAndToby]

Have they done hormonal testing? Some of my androgen hormones are very high but still no diagnosis they say I "might" be on the PCOS spectrum but no treatment offered. I wanted birth control but it causes clots as does my cancer. I eat extremely healthy, bedbound so can't exercise but when I could exercise I didn't lose any weight. Mostly I forget to eat and eating makes me sick. Maybe they should check for an endocrine cause? I know some people with dysautonomia have hormonal problems and there is a medication metformin for weight loss in PCOS; I don't qualify for this medication because my A1C is completely normal and good. 

[Knellie]

@CallieAndToby22 - That's a good idea. My sister and mom both have PCOS, and I wouldn't be surprised if I have it because I feel similar to them except for some added on neurological symptoms. Thanks for the info! I hope you can find some help for your health as well!!

[CallieAndToby]

35 minutes ago, Knellie said:

@CallieAndToby22 - That's a good idea. My sister and mom both have PCOS, and I wouldn't be surprised if I have it because I feel similar to them except for some added on neurological symptoms. Thanks for the info! I hope you can find some help for your health as well!!

No problem! And apparently there is a spectrum to PCOS. Best of luck and hopefully you find answers. Metformin is a medication they give some PCOS patients to assist in losing weight.