Hi Larken,

I have a similar problem, without the exercise angle.    I can't exercise much, because I am too sick.   Most the time I eat very little, because of reaction issues, and difficulty in finding foods I can tolerate way out where I live, and because I get plain scared to eat.   However, when I DO get to really eat a lot, I LOSE WEIGHT!  

This is what one of my better doctors told me (unrelated to Masto, this is a CFS dr.)   She said I am eating so little that my body is staying in starvation mode and hanging on to every calorie.    But that when I eat more, then I can lose weight.  

This also happened to a healthy friend of mine who was trying to lose weight.   She cut her calories too low, and couldn't lose.   When she brought them up some then she could lose.   She was exercising a lot, by the way.

Maybe this will apply to you as well.   Hope it helps!  
BlueSkies

I react if I do intense exercise.  I walk at the mall after work(need an emergency bathroom) and do mini exercises throughout the day and am able to maintain a stable weight.  Throughout the day I do 10 - 15 reps of different exercises.

Thanks, all.  I think I may decrease my cardio intensity and instead switch to more yoga and Bar Method (like a combo of yoga and ballet training) and see how I do.

Joan, that's very interesting.  I had not heard that about the fluid retention before. Thanks for letting me know.  Maybe it is the reason. I do know that I feel like my stomach is extended most of the time and my face is often puffy-looking when I wake up.

Joan;
I was getting dressed the other day & I could've proven your doc.s words ! Tho I am 50, had a hysterectomy, I feel like I have a "period" wardrobe. There are leggings, sweatpants, & jeans. I never know when my jeans will go on comfortably ! It's always a pleasant surprise when they do !
Larken; I like yoga, it's kinder to the body
Pam; I don't slosh- cuz I pee every 5 minutes !!!
lori

I see that it's been about a year since some of you posted about your weight and about some things you were going to try differently.  

How are you all doing with your weight management? I ask because I have been recently diagnosed with MCAS and gained a lot of weight and wonder what's worked for other people.

Thank you!

Ketotifen and/or Desloratadine make me hungry. When I get triggered from stress, food or exertion I often get ravenous appetite for candy which often results in eating more triggering food. I cannot restrict it. When I had hope to get permanently better from diet I was able to eat no trigger foods for almost one year and I lost 20 pounds but I did not get better so I fell back into unhealthy binge eating.
I exercise as often as it is possible which means two times a week because I get totally exhausted for one day and pretty exhausted for another day after exercising. I go to a gym and do strength endurance and strength training. Getting a heart rate in the anaerobic region, like with running too fast I get triggerd very heavily.
Because of being hungry so much I gained 30 pounds overwheight in the last two years but I also got more muscles. I am struggling everyday to start my diet again and I hope to get some pounds down before summer.
I had my best results in loosing weight with low carb diet based on whey protein shakes, turkey, salad, some spelt bread. Proteins and good fat like Omega3 are the most essential calories and give the most satiation.
My diet was effective but it was not pleasuring...

The amount of body fat which is healthy depends on where the fat is. Visceral fat is the most unhealthy and causes inflammation, cardiovascular disease and leads to type 2 diabetis. My body fat is around 32% but my belly is to big and my cholesterine is not good either.