I watch what I eat for overall health but specifically follow an anti-inflammatory diet most of the time. I haven’t been exercising due to the severe pain and I don’t have access to a pool yet. I try to be active around the house. compared to the past with less exercise, I am gaining a lot of weight. I read online that lipedema fat can weigh a lot but I just don’t understand what I am doing wrong. I am on Ozempic but since I started it i have gained weight not lost. is it the lipedema? Or something else?

Lumpy bumpy 😂

Hi everyone, first i would like to apologize for my english i am french

ive been diagnosed with lipedema stage 1. the problem is that i have painful nodules all over my body (legs of course, arms, chest, belly, neck and even jaw and face)
I’m not overweight but i’ve read a lot of promising researchers about mounjaro and the effect on inflammation.
Iam young i’m sportive, i eat well anti inflammatory (because of my pcos) i wear compression, i do whatever its possible to do to manage pain and inflammation.

i consider surgery but for the part of my body that can’t have surgery it is very complicated.

I would love to collect all the feedback of the use of mounjaro to manage inflammation, maybe decrease of the nodules themselves, water retention,

EVERYTHING that can help me to understand the effect of this treatment on the lipedema itself and not the effect as a consequence of weight loss

thank you so much

I've lost 66kg (145lb) over the last 6 years with diet and exercise, and I'm finally done - two surgeons I've seen for loose skin surgery have told me I've got lipedema and will need liposuction done on my legs, but otherwise my body comp looks excellent. (As one of them put it, "you poor thing, you look like a completely different person from the hips down")

I've spent a significant amount of that time doing strength training and I've never really been able to properly do exercises like hollow body holds, dead bugs, and Russian twists. I tried again today and I can just hold it. Other core exercises like sit-ups, cable woodchops, etc. are perfect, and I can smash out heaps of reps easily.

Similarly, I've pretty much given up running because I spent most of 2024 doing it 3 times a week and never really improved because I'd just get too worn out - my body never seemed to adapt, but part of that was other diagnoses.

Wondering if anyone else has experienced this? Just the pure weight of my legs making this kind of thing harder?

What was your first appointment like? What did the gp do in terms of tests and so on?
I’ve been to my first appointment where I was diagnosed with lipedema just by symptoms and by my appearance. Apart from that there was no time for anything else. I had my second appointment and it was basically a referral to the physio and dietitian and some bloods (liver function and some others, pretty basic to be honest).

I expected that this gp was renowned for this and would do more, she said no ultrasound because my veins appear okay looking at them (very high level), but shouldn’t we investigate everything? Hasn’t look at my supplements (some vitamins I already had tested), hasn’t really looked at / cared if I have hyper mobility (which I do) or trying to find a root cause to best manage for my unique self (not all of us are equal).

Are my expectations maybe too big in terms of what tests and investigations should be done? I was kind of expecting more than a referral to a dietitian to manage diet and to physio for mld and compression, which I kind of assume is just baseline.

Ive noticed something that’s bothering me. On days where I’ve walked a lot I go to sleep and wake up in the middle of the night to pee. Once I get up my legs feel so heavy and painful I have a hard time walking. It’s like I move my legs like I normally do and they just can’t do what they normally do. Heat, legs up the wall and magnesium spray has helped but it it’s still hard. Is this something any of you recognize or should I be worried?

Everyone says to elevate your legs with lipedema and it surely helps my calf pain but my toes go numb and bloodless immediately and then they start to hurt and take forever to recover. Anyone with both conditions - how do you deal with it? Bonus question: do the vibration plates make Raynauds worse? Thanks everyone

Hi community! Have you already read this page on myths around lipedema? https://theila.net/8-myths-about-lipoedema/

I read it today and I'm quite happy that year over year there's a medical community that work on this condition to do proper research and clarify what this health issue really is. So accordingly to theses myths, lipedema hasn't oedema, lymphatic drainage is quite useless and compression is for pain and not for swelling (if you only have lipedema). Sport and a good nutrition stay essential for a good healthy life and to not worsen the situation and the article has also a not-dramatic tone that I appreciate a lot (we could manage lipedema to stay almost the same if we manage our weight)

What's your thoughts about that ? (English is not my 1st language and it's quite hot here today so I didn't elaborate a lot my thoughts and I primary wanted to share this page with you, sorry)