r/lipedema

posted here a couple days ago qurstio about symtom. basically I’m in a really shitty situation. 100% bedridden due to mecfs, struggling with other chronic illnesses as well. i have lipedema everywhere and i mean in basically my entire body. it seems the chronic illnesses developing caused some explosion of lipedema tissue. my bmr is incredibly low i can’t eat on my own and food is generally an issue to due mcas. i have bigger problems ik the lipedema but im just seening the lipedema fat develop more in my body cuz of weight gain and idk what to do.

I don’t know how id loose weight and not become malnitrutitioned eveyhthing is just ugh.

Hi everyone. I just came back from a vacation and realized my ankles are super dark compared to the rest of my legs. I couldn’t find much online so I was wondering if anybody here experiences the same? First I thought it’s CVI but it doesn’t look like on the pictures online? It just looks very tanned and orange-y.

hello, i got diagnosed with lipedema stage 1 earlier this summer and have been trying to adjust and following conservative treatments. i wear compression every day, have been trying to go the gym more or less consistently (a lot of travelling so it’s been difficult to stay super consistent), and am trying to adjust my diet to be more anti-inflammatory and calory deficient, but it only seems like i have been gaining weight since my diagnosis whenever i weigh myself. i am also on slinda (a progesterone pill), which i believe may have triggered my lipedema to progress to noticable levels (i may have to contact my doctor and ask about it). i will say, i mostly have been weighing myself at the gym post workout, which i know is not ideal, but it is the only scale i have access to ad the one i just bought for myself just does not work.
the main thing i am struggling is my diet, as i really struggle with/straight up don’t like most fruits/veggies/salads, although i know they are key to not only anti-inflammatory diets, but calory deficient diets in general. does anyone have any suggestions or ideas, even if it is along the lines of suck it up and learn to enjoy more veggies?
thank you!

So having very wide hips being 6’ and weighing over 400# desk chairs suck. Has anyone found one that is great for wide hips and heavy weight. Many that say they are weighted for 500+ are not actually. The height is too short, the foam is dead instantly or they cost $2000 which as a public school teacher is insane!!!
Help. What chairs have worked for you?

I had surgery 6 days ago, the surgeon said she removed 5L.
Same day after surgery (day 0) I was not able to walk at all, in fact I was not able to stand up without almost passing out so I would lie down immediately, so I stayed the night at the hospital. Next day (day 1) I ate well and hydrated well so I felt better and could walk so I went home. Day 2 I was also fine I was walking every while and I even went out (wasn’t driving) and I was feeling very normal I was sitting and could walk a bit. Day 3 I stayed home but I was walking fine. Day 4 and onwards I haven’t been able to stand up and walk a few steps without feeling extremely dizzy and like i will faint, my ears would also close, and my vision will get dark, so I immediately go back to bed and lie down. I’m wearing compression garments and I did 1st MLD session. I’m eating a lot and nutritiously also hydrating a lot. I’m taking iron supplements.
I keep telling the surgeon of my symptoms and she says it’s normal first while after surgery.
Any advice? Any one else feel this way? I’m basically bed ridden at this point.

I’ve been seeing ads all over social media for “lymphatic walking” According to Google it’s gentle walking with a deep breathing technique that activates lymphatic drainage. Anyone done this/had a positive experience? Aware of any free resources that educate about the technique? I don’t want to pay for another program.

I'm a vascular surgeon, not a lipedema specialist, so I want to be upfront about that. But venous insufficiency and lipedema get confused with each other often enough that I think it's worth explaining how they're told apart, since a lot of people in this community mention struggling to get a clear diagnosis.

Both conditions can cause leg swelling, heaviness, and discomfort. Both can involve disproportionate leg size. That overlap is exactly why they get mixed up, and why some people get labeled with one when they actually have the other, or both at once.

A few things that point toward a venous component:

• Swelling that's worse at the end of the day and improves with elevation
• Visible varicose or spider veins
• Skin changes near the ankle (discoloration, thickening)
• Swelling that's asymmetric or worse in one leg

Lipedema tends to look different: fat distribution is usually symmetric, spares the feet, and doesn't improve much with elevation. Bruising easily and tenderness to pressure are also more typical of lipedema than venous disease.

The reason this distinction matters is that a venous duplex ultrasound is a simple, painless test that can identify or rule out venous insufficiency as a contributing factor. If it's present, treating it can meaningfully help with swelling and discomfort, even if it's not the whole picture. If it's absent, that's useful too. It tells you and your care team that the swelling isn't coming from a treatable vein problem, which points you back toward lipedema-focused management.

I'd encourage anyone dealing with unexplained leg swelling or heaviness to ask specifically whether venous insufficiency has been ruled out as part of their workup, regardless of what else is going on. It's a piece of the puzzle that sometimes gets overlooked.

Happy to answer general questions about the venous side of things in the comments.

hello, iam trying to find a drug to manage lipedema and pcos.
Dis some any of you have feedback to offers on this two drugs

Did you noticed some effects on the inflammation, water retention, swelling, and also the fibrosis tissu itself

thank you

Hello :) I want to preface this by saying that I go between thinking I may have lipedema and then having serious doubts about having it. I experience no symptoms other than some surface level texture (which could very well just be cellulite) and more bottom heavy fat distribution (but I do not having cuffing, or at least nothing that looks like anything I’ve seen on this subreddit or in research articles, or saddlebags). I do have more fat around my inner knees, and calves that are largely unaffected by whatever may be going on. This is a bit of a long read, sorry! I’ve been nervous to talk to anyone about this for a long time, and I’d like to be able to properly articulate my experience now that I am going to talk to someone about it.

A bit of background:
I am 25 and I do a mixture of cycling and weight lifting 4-5 times a week, and have always been an active person. My legs have always been larger than my upper body, but I’m unsure if this is “disproportionate”. I have reasonably severe body dysmorphia, so I am inclined to say that I probably perceive myself to be more disproportionate than I actually am.

Here’s what I do struggle with, I tend to have day to day, symmetrical swelling in my legs. From what I have read, and the women around me, the swelling seems to be more “reactive” than normal, throughout the day swelling. While it’s the swelling that’s at times made me think that I may have lipedema, it’s the irregularity of it that also makes me doubt that I do. Some days I wake up with quite lean legs, that have clear definition, and other days I wake up with what looks like noticeable water retention around my knees, and have noted that this swelling tends to be around major lymph nodes. Given what I’ve read, lipedema sounds like it doesn’t include this kind of day to day fluctuation? This may be a misconception that I have, and I would so, so appreciate any input about this.

I‘m having a complete meltdown. It took me an hour to get into these. I wore gloves. It was so hard to put them on. I will be bruised all over because of my knuckles digging into my flesh to put them on. It‘s my first time wearing them and they RIPPED!!! I need to wear CCL 3 because I‘m stage 2 so I have no alternative. I‘m crying.

I bought it for legs flow. But 1 week in my legs feel more swollen and uncomfortable is that normal? (I dont have lipedema)

Has anyone had liposuction and skin tightening for these areas? Are you happy with the results? Any photos before/after?
I’m so unsure if u will get the procedure done or not since I’m scared it will only looks worse after..
The fat on the side creates a bump which makes it look like I have more cellulite then I have.
It’s not the fat itself that I don’t like there

So I have one pair of bioflect leggings and otherwise only have a few compression socks. I really need something for my arms, but I’m unsure of what a good option would be. I see that bioflect has long sleeve compression. I’m curious if anyone has another brand/type they like that’s at least getting the upper arms. I’m not certain if they need to be graduated compression or not (I noticed bioflect didn’t mention this and now I’m wondering if the leggings even are 🫠.)

hello, since my lepedema started to become symptomatic i have notice a real global change of all my body.

I don’t know how to explain but i think that i have nodules everywhere.
it first start with some weird feeling in my face and every time i was looking at me at the mirror i was like « something has change but idk what »
my face looked always puffy and i had the feeling that i had water in my cheeks.

Then i started to touch my chin, my jaw to try to figure what really happen there

that is when i started to notice that, yes, what i feel may be nodules. it is the same feeling that nodules in my legs and arms. Juste like little grain rice all over my neck and jaw

I really don’t know what to do. and i know for people who dont know me that they couldn’t see the difference.
But from the inside it is very difficult to explain.

I wish that all this nodules could go away, all this inflammation water retention…

There must be a solution…
i can’t leave all my life with this feeling that all my fat is something external to me, this fat is like a parasite who live his own life inside me
It’s making me crazy actually.

Just want to turn it off
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