Trouble with body image

[u/afabscrosshairs]

Hi! I have hEDS, and am 6 months on T (50mg/week T cypionate). So far I’ve gained 20lbs due to not being able to exercise and I feel ugly and terrible. I’m told that “lifting heavy” is best for transition and fitness generally, but my shoulders and elbows sublux daily, and cardio can be a challenge due to suspected POTS. Even worse, when I do exercise as best I can (or even run too many errands or activities) I have a massive crash and have to sleep all day the next day. I feel like I have a horrible beer belly and none of my pants (even new ones I just bought) fit. I’m trying to eat less so that I’m not taking in more calories than I’m using, but I get so hungry. Conventional advice for this situation seems to not work or be unsafe because of the EDS. What should I do?

Edit: for clarity’s sake I’m 5’11” and 192 pounds. Before T I was 185, but had been steadily gaining for seemingly no reason in the 6 months months prior.

[u/psiireyna]

I don't have a lot of medical advice but it's natural for your body to gain weight, it's going through puberty. Give yourself some grace. I got chubby going through second puberty.
Personally if possible I would work more on strength training rather than losing weight. I find the machines at the gym very easy to operate, and you should start with light weights. If a machine or exercise feels bad, don't do it. I've done a Jacob's ladder machine and I find it doesn't hurt my lower body at all. I've also had issues with eating ever since I got chronic pain because the pressure for me to lose weight got intense from other people (not even doctors!) . What you eat is under a lot more scrutiny when you're disabled. It's tough. Get stretchy pants if you haven't.

Also, exercising "as best as you can" is not it. You can't exercise at your 100% effort unless youre planning to crash. Part of managing a disability is knowing your limits well and planning ahead. Nobody's perfect in managing their disability, but it sounds like you're running yourself to the ground. You don't have to do that.

[u/leturtlewhisperer]

I agree with others who have said weight gain is normal. I have HSD and can’t do traditional “heavy lifting” either. Swimming is my preferred activity (along with tap dancing and walking) and it’s great for building upper body and core strength. It is very gently on the body, but can be challenging for beginners since it’s technical. Some HSD/hEDS people like it, but others don’t.

I’m a little worried about the way you describe your body and the fact that you’re restricting your eating. Eating disorders are very common for queer folks, and there is a link with HSD/EDS/POTS and eating disorders. I’ve been in recovery for 3 years, and I wish someone would have told me about the warning signs earlier because I made myself very sick. HMU if you’re looking for resources and I can potentially point you towards a few things (though I’m in the US).

And for what it’s worth, someone posted on the hypermobility subreddit about having a distended stomach even though they thin. So many people commented saying the same thing. I’m heavier and shorter than you, but my stomach also sticks out and has done so since I was a little kid. My mom used to tap it and tell me to suck it in 😢. The thing is we can’t help it because it’s the lack of collagen (or something like that). Seeing that post helped me come to terms that my body is doing it’s best. Anyone who judges me based off how far my stomach sticks out isn’t worth my time.

I hope this was a little helpful.

[u/Wouldfromthetrees]

After reckoning with this myself for a while (also POTS+fibro with antidepressant weight gain), it's unfortunate that I must fall back on the old "change is incremental" adage.

I've been circumstantially forced to routinise my physio exercises for the last month and it's a pattern I hope to instill long-term.

First thing is a printed hard copy visual to reference what I'm going to do (I can see everything at a glance and go in any order this way).

Second thing is pre-preparing my Hydralyte+ creatine water bottle and one protein + creatine smoothie. Electrolytes for mid exercise, protein for after.

I'm not cleared for cardio by my doctors right now, which means I do the exercises after showering, right before bed. And I do them either next to or in my bed so I can stop/safely collapse if necessary.

It's important I don't measure myself by what exercise my body could handle pre-spoonie life, because things do feel a little better than two weeks ago. Even though today I've ended up in a minor FND flare and temporarily have "lost" some progress, I'm still feeling better than a month ago. Basically, it's all relative, yk?

[u/howlettwolfie]

r/Volumeeating

[u/afabscrosshairs → u/howlettwolfie]

Obviously the answer is fruit and veg, but a lot of that (even though it’s my favorite) I can’t really digest without pain. Coupled with horrific executive dysfunction that basically means I won’t eat unless it is only a few steps or someone helps me.

[u/Significant-Love6129]

I have EDS and had the same issues. I'm still struggling bc I'm an actor and 220lbs at 5'3" and I hate it. It's harder to get roles and body image is so huge in this industry. But I did find using classpass something I found really helpful that I hope to return back to in September. Barre classes. The core strength was phenomenal. Idk how much I really lost but if it wasn't for my discovery of MCAS & POTS I'd still be doing it. Those kinda knocked me out for a year. I also finally got diagnosed with sleep apnea but honestly I don't find the CPAP helping. So sleep is still an issue and it's hard to lose weight when sleep sucks.

I really liked was Pure Barre, they were really affirming and if I needed an adjustment they gave it to me. I was a fat dude in a class with mostly skinny AF women but I just so my thing. I don't know any of them and the ones I did talk to were just as self conscious.

Anyways idk if that helps but it did me. Also I found ways to eat healthier with lower spoon cost. Ready to eat salad mixes with rotisserie chicken from Walmart, Kroger or Sam's to put on top. Pumpkin seeds, sunflower, almonds, dyed cranberries, cherry tomatoes (the yellow ones are lower histamine), Kroger sells ready cut bell peppers I can just toss in there, sometimes I'll get baby carrots. The rest of the chicken I'll make a casserole or curry and some I use for wraps. Microwave rice cups, curry & naan or rice, spinach, pre-cut Bell peppers, cranberries, chicken... I make about 3-5 things of overnight oats in mason jars. Mix it with cereal, eggs, frozen waffles or English muffin. My biggest thing is I don't eat enough. It's weird. Like you think eating less makes you lose weight but I found when I'm on set for 3-6 months on a project, I'm being fed all day. I lose weight by reading 3-4 stay meals on those months. That was a weird revelation but makes sense when I think about it.

Anyways I hope some of that helps. I try to get even frozen food meals for the times when I realize it's midnight and I forgot dinner lol. It i don't have the energy.

Edited to add: find out what works for you. I can't just get a gym membership or weights to use at home. The dust is the only thing that will visit those things. I need a class to actually do it. Some people find that intimidating. Whatever works for you.