r/lipedema

I have medical grade (CCL1) thigh-high open toe compression garments. And I have stage 1 lipedema.

I have started compression about 2 months ago- my garments are surprisingly comfortable as I usually haaaaate tight fitting clothes (it’s some kind of sensory thing, idk). But yeah, surprisingly comfy compression, so I’ve been pretty diligent with wearing it. But, if I wear my compression all day for several days in a row (taking them off at night, of course), my toes get purple and a little sore and blistery. They calm down again if I take a break from compression for 3-5 days.

My compression was fit by a medical professional who thoroughly took my measurements, so I’d be surprised if ill-fitting garments were the issue. They are comfortable, and I have no other symptoms (such as numbness, tingling, pain in my legs, etc). They’re also graduated compression, so I thought they’d be moving fluid up my legs, rather than messing up circulation in my toes. For reference, I’m Australian so it’s winter at the moment (days are about 11 degrees celsius on average)- just noting in case that’s a factor.

Anyway, just wondering if anyone’s had the same issue?

I have been on GLP-1 since October last year. I was 226 lbs and now 204. I was doing vibration plate, compressions and so on. Lately, I’ve been depressed as it’s becoming more evident and I’m still getting flare ups and same symptoms as when i was overweight. I also been on a low food Map diet and trying my best to eat healthy. Right now I stopped vibration plate and everything I was doing. I’m really tired. I’m feeling overwhelmed from all of this and my swelled ankles are not helping. Walking is becoming more difficult idk y , I thought weight-loss would solve the inflammation part and mobility issues. I’m also in my first year of marriage and going through a lot. I dont even know right now what I’m looking for? A relief? A solution? Comforting words? Anyone just feel lost . I feel lost at this point and Idk which direction to go?

So I’ve pretty much consistently walked or done some sort of strength training 4 to 5 times a week for years now. I’ve been going through a lot of difficult shit and definitely have been too depressed to be as physically active as I’ve liked the past few weeks. I started getting this weird ache in my legs that just won’t go away. And they feel very very heavy. It finally freaking clicked that this is the pain people are talking about. I know exercise helps with circulation. I have definitely been too depressed to dry brush and massage gun my legs lately as well. And honestly this realization made me cry because I’ve been to multiple doctors that told me because I don’t experience pain, I can’t possibly have this disease. But clearly I do have pain. I was just able to manage it very well. Thankfully, the last doctor I saw who’s a vascular surgeon believes I have it and just wants to follow up with me in a few few months. Why don’t doctors acknowledge that if you work out that can improve circulation and most likely the pain? I just feel like I’m constantly dismissed and it’s so frustrating. anyways just wanted to see if anybody has experienced the same thing when it comes to working out and pain.

I have been diagnosed with lipedema by three practitioners. One of them was the amazing Emily Iker. She did an ultrasound and told me I do not have the co-morbidity that is common with our condition. Since I do not also have lymphedema I’m wondering:

1. Is there anyone else who only has lipedema?

2. Which treatments are more for lymphedema? Like is MLD still something I should look into even though I don’t need lymph support/help draining? Vibration plate?

Do Europeans have lipedema? Is it more common in the US? You see Americans traveling abroad and losing weight/bloating/inflammation so I’m just curious if there are any Europeans in this group.

Since we're at a higher risk of developing blood clots, DVT, VTE, and CVI/venous insufficiency, I'm wondering what we can do to help prevent these complications. Is it possible to lower our risk, and if so, what preventative measures are recommended?

I am aware this takes me into slightly controversial territory. I tried grounding first a number of years ago to help with general inflammation related to chronic conditions and the results were very apparent. I tried it again a couple of weeks ago and realised how much better and lighter my legs felt. I live in an apartment so I can only do this occasionally. The best my legs have felt for years was after 2 hours laying on the sand at the beach followed by an hour long swim in the sea. I am a novice at all this and have only tried Pilates,Yoga and Swimming so far, so not an expert on methodologies. My skin on my legs even feels smoother. It is viewed as pseudoscience by many and but equally alot positive anecdotes for dealing with inflammation, including mine.

It's free if you have access to a patch of grass,soil or sand, low effort/energy required and unlikely to worsen the condition unlike more aggressive options such as the vibration plate for example.

Hi everyone, I (31) got diagnosed with stage 1 lipedema about 2 months ago and just started with conservative treatments (MLD, compression, nutrition, exercise etc.), however i was also diagnosed with endometriosis a few years ago and have been taking the pill (slinda, no estrogen just 4 mg Drospirenone). The pill has helped me a lot with my endo symptoms and my gynecologist said that it could help maintain some of my fertility if i plan on having children later. My doctor said that i should think about stop taking the pill, as it can worsen the lipedema. i havent talked to my gynecologist yet, but i have an appointment soon. Has anyone had a similar issue? I do want to continue treating my endometriosis but I’m afraid it will worsen my lipedema.

My bf keep telling me that my legs are too fat and that i probably eat too much while he's not with me. Or i probably eat too much sugar or fat.

I don't eat that much, i never eat pasta or rice, i eat vegetables and chicken or eggs or shrimps. I drink water. I don't eat any sugar but a little dark chocolate.

I do sport 2 times a week, i am active.

My lipedema became worse since 2 years. Now i have it in my arms, and my stomach. It's very painful. My mental health struggles.

My bf tells that having a beautiful body is a simple equation: eating less and training more.

I'm 44. I don't know what to do, i just want to stop this hell.

I have my first surgery in less than 2 weeks. I’m just curious, I’m 150 lbs- I’ve read they can remove up to 10% of weight (obviously depending on surgeon and how you’re tolerating it). does that genuinely mean it’s possible it could be up to 15 liters? Or how is that calculated. For anyone roughly my weight, how many liters did they remove per surgery?

I'm not officially diagnosed. I tried a while ago, and called the office my PCP recommended, but they said "we don't do that" and basically hung up on me. I didn't know what to try after that and I'm pretty low level anyway, so I figured I'd just figure it out myself.

But when I finally got serious about wearing compression, I put on ten pounds and all of my clothes got tighter. My waist now has this fluffy fat on it that it never had before, and my legs didn't seem to really get better.

I noticed recently that a couple of pairs of jeans that I got from a friend that were previously a bit loose, were better fitting, so I've started to wear those recently. These pants are tighter at the ankle and looser at the waist (like I kind of need a belt to keep them on, but I can go without if I don't mind hiking them up somewhat regularly while walking). Wearing those seemed to help my weight go down again a bit. (Not to the previous level.)

Recently I figured I'd try my compression stockings again, so I measured everything and rechecked the next day after wearing compression all day. My legs got smaller, but my waist and chest got bigger. I'm worried that I'm stretching out the fascia/skin in new places leaving everything to swell more. But also, a lot of what got bigger was my hips and waist when I previously gained 10 pounds, which would've been under compression. Is it possible too tight of stockings on my waist is making it hard for the lymph to actually get to my kidneys somehow?

i've not seen anyone talk about this so i guess i'm the first one.

i finished lipedema liposuction across full legs and arms in february. since then, literally any part of my body that hasn't been lipo'd has gained a little cushion, specifically my chest.

i'd attribute this to the fact that i stopped exercising during this time and have not found the motivation again yet but woah. fat also now seems to gather in my stomach as well... i did hear people say that the fat will always find a way to go somewhere.

i think i did gain a little weight but i did not expect this.

just fyi in case anyone is going through a similar thing.

Has anyone worked with Becca Chilczenkowski (Instagram tag u/thehormonequeen) for lipedema? I am always a skeptic, but I saw this post and was like wow https://www.instagram.com/reel/DWY3GUIimXA/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA== I want to avoid surgery if I can and am looking for other options. Currently on low dose mounjaro, swim 2x a week, strength train 2-3x a week, cut most bread except sourdough, cannot cut dairy and maintain protein, limit processed food, etc.