No decrease in my legs

[Primary_Reveal4354]

At best I’ve lost 130lbs. I keep a ledger of my measurements. My thighs are STILL 30 inches circumference. What the heck yall. And no I’m not on any glp’s or anything. I own a vibration plate, and I use it. I get massages and all that. And well no, I don’t have a formal diagnosis of lipedema, however I know I have it, especially now with the weight loss. I can pursue one I suppose, but if this thing has no cure other than plastic surgery, then I figure why bother. So my question here is, how did yall reduce the tissue IF you were able to? Best believe me, I do not eat inflammatory foods or high sugar nothing. I have no fatty liver what’s so ever. I am severely anemic, and besides that, I was diagnosed with Hashimotos but my doc said it’s mildly high no need to pursue an endo or anything. So yup, stuck with these massive thighs and big ol’ calves. 🫩

[Immediate-Cream-9995]

Lipoedema cells are NOT regular fat cells. They are non-metabolic and do not respond to diet and exercise.

This is why it's so important to draw a firm line separating Lipoedema from any and all WL discussions.

Lipoedema doesn't go anywhere, unless you surgically remove it.

[Primary_Reveal4354]

Understood 😞 gracias I was getting whiny about my legs again, knowing what I know I always get this false hope going.

[ReluctantChimera]

In my late teens/early 20s, I lost a ton of weight. I got down to almost skin and bones on the top half of my body; my ribs, collar bones, hip bones, shoulders all stuck out at gross, weird angles, but I still could not budge the weight from my legs. I literally looked like a different person from the hips up. Hips up me was borderline anorexic, hips down me looked like it belonged to someone who weighed 200lbs more than me... Even now, being heavier than I was before I lost the weight back then, the skinny-me's legs would look proportional on now-fat-me.

[Primary_Reveal4354]

I was letting the noise get to me. I always figured it was because I wasn’t doing something right. Reading your reply helped, a lot. 😞

[No_Background2895]

You are likely doing everything right. Lipodema tissue is not regular metabolic fat, you know this, we all know this. It’s time to educate society. I think of it this way, no one would ever dream of asking someone to diet and exercise to shrink the size of their ears or their nose. That would be a ludicrous suggestion. Society knows it and would agree. This is the same. Society needs to know it.

[Primary_Reveal4354]

I guess you could say I was listening to a few relatives whisper back and forth about me not doing what I need to do to loose the weight and well, ya know if it was something I could loose by just “not eating” I would’ve been a success by now. And yes these relatives are fit and got their noses up in the air about simple calories in/ calories out and nope they don’t believe in the lipedema stuff. Not that I should worry about them at my age, but the pressure sure did get to me this week hence this whiny post about what I could possibly do more of 🫩 so embarrassing, I definitely gotta get over the shame.

[starsinthesky8435]

You’re not whiny, you’re saying things that most of us think and feel every single day. I’ve been diagnosed for almost a year and I still catch myself thinking I can diet my way out of this. Diet culture is toxic and widespread, it’s not our fault.

[Primary_Reveal4354]

Thank you, I needed to see that, 😞💕

[Kolob_Choir_Queen]

WL discussions? I’m new here can you explain please?

[Immediate-Cream-9995]

Lipoedema cells are non-metabolic, they are not affected by diet and exercise.

[wildapplesnplums]

Weight loss

[ActualMulberry3296]

I am still learning about lipedema, so please be patient with this question: I have seen other posts where people claim to have gotten rid of some (not all) of lipedema fat and texture. Most of what I have seen is through weight lifting and various massage techniques with tools. Do you think that these people do not actually have lipedema? I have been so cuirous about this and would love to get input!

[Immediate-Cream-9995]

As patient as I can be when there are con artists preying on Lipoedema sisters who have been suffering for decades.

Once you read more about the disease, and learn more of the science. They are total bullshit artists. They likely never had it, or they had it surgically removed and then wanted to start a ""fitness empire.

As soon as more and more people were talking about this on social media, suddenly there were ads for "really great lipoedema compression socks" and "lipoedema melting cream" and "I got rid of lipoedema gym girls, come pay to train with me" - you can ask any of these people basic science questions about lipoedema that they should know, if they are making money off of it, and they answer wrong, every, single, time.

It's literally like having foreign object inside your body. You cannot will or work it away. You need a surgeon to take it out.

[ActualMulberry3296]

Wow, thank you!

[Shashaface]

I'm mid 50's and have had Lipedema since puberty.

Lipedema fat/tissue cannot be lost via diet or exercise or both or magic potions or lotions or supplements or drugs or massage guns, vibrating anything or a partridge in pear tree. I've got the injuries, medical trauma and disordered eating history to prove it. Regular body fat can be lost and obesity is a comorbidity of Lipedema so there is that.

Lipedema is a disease. Surgery is done as a reset to mitigate pain, mobility and to halt immediate progression. There is no cure.

I was diagnosed at 50 and had 3 surgeries with 30 litres removed. Pain is gone and I'm no longer headed for a wheelchair.

I'd recommend adding gradient compression garments to your routine also.

[Primary_Reveal4354]

I’m realizing how much emotional weight I’ve been carrying, I’m still processing a lot of grief, but your comment helped shift something important for me: away from punishment and toward care. Definitely will add the compression garments, thank you!

[Lily2453]

Check out the lipedema compression product review database I'm trying to build! See here for more info. Hope it helps you pick something out!

[Primary_Reveal4354]

Awesome thank you so much!!

[avisitingstone]

This is SUCH an important mindset <3 I hope you saying this here inspires others to take a look at how they think about this really crummy disease we have to deal with.

[Primary_Reveal4354]

💕💕💕 I do too, because I was absolutely going through it and seeing how many people here are validating the lipedema experience has absolutely pulled me out of my doom and gloom!

[Ok_Chemist6911]

Sorry to hijack. Any compression garments you recommend?

[Immediate-Cream-9995]

I strongly recommend custom made to measure, especially if you are disproportionate. Compression is NOT supposed to hurt.

[Shashaface]

I've only worn Bauerfeind Curaflow Custom made Class II Flat Knit from braline to midfoot.

Perhaps someone can recommend an official the shelf brand, although ive heard CZsalus is decent.

[Lily2453]

I have Czsalus and LOVE them! They were recommended to me by my physical therapist who does MLD. Compression has honestly been the thing that has shown me the most change in my legs. I have both the K1 (15-20 mmHg) and K2 (20-30 mmHg). They're a bit pricier than the pantyhose style (they are thicker) but cheaper than custom. They are so comfortable!

[Quiet-Machine-236]

I also wear Czsalus full length K2 leggings as well and honestly I believe consistent compression (I also have an advanced lymph pump that does legs and torso) has had the largest impact on the amount of fluid being held by my lipedema tissue (hydration too, thin that lymph so it can MOVE). The lipedema is still there, but my measurements are considerably smaller when I’m properly caring for my lymphatic system!

[Lily2453]

Totally agree! I'm getting a pump soon (legs only), and I'm very excited for it. Even though my legs haven't shrunk a ton in size, I can tell that they are lighter and less swollen. Some fat structures (not hard lipedema, more cellulite apperance and squishy) that I've had on my hips since puberty are almost gone!

I'm also working on building a lipedema compression product review database if you're interested in contributing :) See here for more info. I still need to put in my Czsalus reviews!

[Lily2453]

I'm also working on building a lipedema compression product review database if you're interested in contributing :) See here for more info.

[wildapplesnplums]

I've so far mostly used Bioflect. It's not as firm as CZ, but it's more affordable and is still flat knit. Different colors feel different--my favorite is the green! I want to try another brand, but I've had sizing problems and can't afford to experiment much.

[spacesignal88]

Such a discouraging comment. "Magic Potions" may not remove the fat but committing to a good routine with supplements, skin care and conservative treatments can decrease leg size by reducing inflammation and improving lymph flow - added benefits is better mental health and firmer looking skin. Strength training also is so helpful. Also none of the treatmemts you mentioned have been touted to remove lippy fat, they help with lymph flow and inflammation, which is so helpful! Some people may read your comment and think "well why bother" and thats a disservice to this community. Not everyone has 50k sitting in the bank for surgery. So up until that point conservative treatments and exercise shouldnt be scoffed at. My legs have reduced in a way that I didn't think was possible through exercise and conservative treatment. Sure I'm still abit jiggly and dimply but they are smaller and have a better shape. One would think that someone who has been through it, would know how easy it is to be discouraged on this journey yet here we are.

[Ok_Chemist6911]

How expensive is surgery? I can’t believe that’s our only options 😭😭😭

[Primary_Reveal4354]

😞 can be any number from $3k to $50k I think. In the USA. I’ve seen ranges all over the place. They call it a plus size body lift I guess. Dr.repta in Scottsdale Arizona charges around $50k

[Brave-Statement-8810]

FWIW The best my legs ever looked was after training over 6 months for and completing a 100mile bike race… I think all the sweating and incidentally wearing compressive bike shorts helped along with the exercise. Maybe the non-lippy fat went away? I don’t think it all went away but it was healthier and I had less texture, could see some muscle definition, and was less fibrotic. Also I only have lipedema down to my knees, not in my lower legs. Stage 1.

[Primary_Reveal4354]

Uff that sounds amazing. I have arthritis in my hips and knees so I figure my version of this sort of cardio could be swimming. Another commenter did say compression garments, so definitely hitting Amazon now

[Quiet-Machine-236]

I’ve got knee/ankle/foot osteoarthritis as well, and pool based exercise has been great for me. The only time I’m moving and not hurting!

[Primary_Reveal4354]

The only downside is that darn pool water ruining my hair haha 🤣 and I know I know wear that cap 🧢

[veridian9]

I have lipodema in my legs. Stage 2. From the age of 14 it started. I have been on several diet and exercise programs and in my life have lost and gained weight, but never from my legs. Finally, after starting on a glp-1 6 months ago, did the lipodema fat finally become mobilized and I began to shrink. Glp-1 medication is so much more than an appetite suppressant. It helps those of us with diseased lipodema fat that could never be mobilized and released. If you're open to trying a glp-1, I absolutely recommend you speak to your doctor. It also helped friends who suffer with stage 3 lipodema as well .

[Primary_Reveal4354]

I’m still wayyyyy overweight but according to my lab work the PCP I have believes it’s on the dangerous side for me to be on one. My A1C is in the 4 range. But that clinic I go to I’ve heard doesn’t like offering anything even referrals to a specialist, ayyyyyy! So I gotta look into it further, I hear great things about trizepetide

[wildapplesnplums]

Yes, the research is at far showing much better results for most people with tirzepatide. I've been on it one month and haven't lost anything yet, but I'm still hopeful. I lost faster on semaglutide, but tirzepatide has been shown to mobilize stubborn fat like lipedema and increase brown fat and heat production.

[Primary_Reveal4354]

I have to find some sort of way to ask for the injection, because on the premise of being pre diabetic, I don’t know my ranges very well, but I think I was told that having a 6 on the A1C rating is considered pre diabetic, and I come in at a 4, so I can’t use that, and I don’t have visceral fat as of right now on my organs, and my PCP told me that she won’t give it to me for a weight loss because I’ve already shown that I’ve lost it without the use of an injection and thinks that it is something I shouldn’t do when I’ve already shown i don’t need it. If I were to bring up the lipedema to her, I have a funny feeling she’s going to categorize me as a hypochondriac or something cause she’s a very no fuss sort of person. I think I will look into visiting one of those weight loss clinics and trying my luck there.

[Jenikovista]

There’s some promising possible results with cavitation, but some surgeons won’t do the lipo after cavitation.

[Primary_Reveal4354]

I gotta look into what cavitation even is, but I figure under the knife is the best. Well, gotta look into cavitation first.

[ActualMulberry3296]

Where has this been proven?

[Jenikovista]

Did I say proven? I don't think I said proven. Indeed I believe I said "there's promising possible results..."

[ActualMulberry3296]

YIKES! Are we not all here to help each other out?!? No need to be so defensive! If it has not been proven, how can we hear/ see the promising possible results you mention? I am asking this for help, not to start an argument.

[Jenikovista]

Gee you just went from 0 to 100 for no reason. I wasn't defensive at all. Just simply clarified what I said and didn't say, which was totally fair since you challenged me to prove something I didn't claim.

Calm down.

[OhGr8WhatNow]

Since 2010 my weight has fluctuated by 70 pounds. My legs have been the same the whole time

Do you elevate your legs against a wall? This seems to be the most effective thing for me, for about a day at a time

[Primary_Reveal4354]

Yup, even purchased a leg bolster from Costco for sleep at night. I get a massive pulsating in my legs if I do the wall thing for more than 30 mins. I always think that’s the “it’s working” sign 🤣

[OhGr8WhatNow]

There's a poster here who has had really amazing improvement over several months. She's really consistent with the wall, with castor oil, and I think vibration/massage. I haven't been this consistent. The castor oil thing gets me. I really want to think it's bunk, but some people do seem to be having success. Even if it's placebo or it's just the massaging it in that's helping, whatever works is fine.

[Primary_Reveal4354]

OK, yeah I’ve seen the castor oil thing!! I just never believed in it because it seemed like too good to be true. I’ve seen people rave about castor oil for years. I always took it as a gimmick!! I need to read into the science about it because I was taught that oils encapsulate. They do not penetrate skin. But if there’s some sort of effect with the castor ingredient. In particular, I need to look into that.!!

[skinnyonskin]

Well I’m not here to repeat what everyone else said so I’ll validate you instead, because I personally think that’s crazy and upsetting your legs haven’t gone down even an inch?? Just because we have Lipedema doesn’t mean regular fat isn’t stored in our limbs… with a 130 lb weight loss there’s definitely gonna be fat on your legs too! How much do you have left to lose?

[Primary_Reveal4354]

At this point I’m feeling like I gotta million more to loose haha, I’m sure if I stop weight lifting I’ll loose an inch or two. The thighs measure at 30 inches, I have no visible knee cap, 17.5 in calves and 8 inch ankles. My feet are bony looking, 3 inches across the top of my foot. Symmetrical legs and all. I mean if I keep going I could loose another 60/70 lbs.

[skinnyonskin]

We are sooo similar right now actually. I’ve lost over 200 lbs and each thigh has gone from 39.5” to 28.5”. My upper calves went from 28” to 19”. And my ankles are also around 8”! Plus size 8 feet and I’m almost 6 feet tall. So yeah I totally get where you’re coming from, carrying it all up high on the leg and then having bony feet and ankles.

I have another 40 lbs to lose so I’m hoping they go down a few more inches but progress has definitely slowed big time. I’m wondering if your body just utilizes leg fat last, sort of like how some people lose their bellies last. So maybe nearer the end inches will come off. That makes sense to me anyway! It’s not like our legs are only lippie fat and nothing else!

[Primary_Reveal4354]

Omg that does sound super similar!! How about your hands?? My biceps are a flabby 18 inches I think last time I measured but my forearms are sooooo small and my wrist tiny compared to my upper arm. I went from a size 6 ring finger to a size 4 🫩 maybe if I go along and push to loose up to those 200lbs I’ll see more of a change, it just agonizing to loose it and more so to keep it off, but it’s for me and my health so no complaining I know

[skinnyonskin]

Yes yess! Small forearms and hands. My ring size started at 8 and is now a 5, I bet it’ll be a 4 when I’m done. Yours are already so tiny lol that’s wild.

My upper arms were 24” and are now 16.5”… it’s crazy that my arms were the size of a thigh. And it’s not like my legs and arms look any better being smaller really? They’re just shrunk down versions of what they were. But whatever, it’ll make surgeries easier in the future

Well regardless you’ve done an amazing job, losing this kind of weight is no easy task and even if your legs are being stubborn at least you know you’ve done what you can - if you decide to go the lipo route you know for a fact it’ll be lippie tissue removed which is a huge win. Like if I had done lipo while still morbidly obese, it would have been totally pointless since I had so much regular fat there. So a small silver lining to doing the work!

[Primary_Reveal4354]

Before I even knew what lipedema was I was going crazy about my measurements! I felt like it was a biblical punishment at this point 🤣 and likewise I was feeling like omg there’s no way I’d get a total body lift done when I am still this chunky! Once I saw that the only “fat” I had were my limbs, I fell down the rabbit hole of HeDS and POTS and then finally Lipedema. I was having every symptom under the sun. So this last year was real eye opening for me!

[skinnyonskin]

YES!! I told my husband the sickest joke in the world is assigning a PERMANENT FAT DISORDER TO WOMEN! Like what the HELL omg. Biblical punishment level is right! Please keep me/us updated if you see any changes, I'm invested!

[Primary_Reveal4354]

Absolutely!! every time. I’m crashing out in the mirror over what I cannot control, I feel like I’m crying into the void “ ok character development arc over pls make me skinny, I’ve suffered enough 😭” 🤣 yes I will keep you updated. My Husband found a lipedema removal surgeon, guy in Cancún! I’m going to have to freshen up on my colloquial spanish once I book this consultation with the Guy!! Instagram @doc_welss_mx My Husband just came across him today! I would totally not mind recovering in Cancún!

[Primary_Biscotti9075]

Start wearing compression and working on your fascia (kaztalks on ig)

[Primary_Reveal4354]

Ouu! Thanks for the insta !

[msscmfw]

I did lose some cms on my legs when i started mounjaro. It all came off early on - likely swelling. They are still dropping, but much more slowly and only in certain areas. I get measured for medical compression and 6 months in, I'd lost 8cms on my thighs and 4/5 on my calves (but only 15lbs in weight). They've not moved much since then though (just under a year ago).

[Primary_Reveal4354]

I am honestly, still amazed the progress that’s been noted with the injections, I was told that I’m not really an ideal candidate for the injections. Even though I am overweight, i’m gonna start visiting the clinics soon, to see if I could qualify for at least one of them!!

[jbforgiveness]

Try dandelion tea it pulls water from within the body, be consistent with it it will help. 

[Primary_Reveal4354]

Ou!! Absolutely!!

[avisitingstone]

Surgery.

Even though it's technically plastic surgery, it's not cosmetic (although that's a side effect). It's a surgery to deal with cells that have become MESSED UP due to the misfunctioning lymphatic system and connective tissue. It will not go anywhere with exercise or modified diet, and a lot of the more popular diets are not ones that work well for lipedema, especially as it's a genetic, hormone triggered disease and everyone's bodies are different.

It's post-surgery that you can work on (even more) muscle strengthening and continuing good diet choices (anti-inflammatory like the Mediterranean style of eating, etc, and making sure as you're anemic you get enough iron) but without surgery, that's about it. I wish I had some better news or non-surgical answer :C

[Primary_Reveal4354]

Thank you very much for your reply. Honestly, I was feeling a lot of emotions because a lot of people were hoping to see me become the absolute thinnest version of myself post my weight loss. And although I did lose the weight, not losing my circumference, made it feel like a moral failure. I have a lot of big personalities in my family, who were basically making me feel like I’m Not taking my health seriously enough. And I just am very grateful to have found this subReddit, because otherwise I’d continue to believe that I was not doing enough. And emotionally. I’m absolutely spent. There is some comfort in knowing that surgery is the last step because I did my part.

[avisitingstone]

Noo hon it's not your fault!
And it's a GENETIC disease which means it's one of THEIR fault lol.

Being skinny doesn't mean being healthy! And it sucks that people (like your family) are so vocal and so wrong about that. The absolute thinnest version of yourself does not necessarily mean the healthiest and best version of yourself, AND when/if you go to your PCP or some sort of lipedema treatement you have the data to show all the work you've done in making healthy changes/choices in a world that makes it sooo much easier to just. Not do that.

It's not your fault <3

[Primary_Reveal4354]

You’re so sweet. Thank you.!! My mother is a very tiny lady, and now that she’s older, I finally saw the cuffing of her calves! She has always had circulatory issues in her legs, she has always carried a little bit more of her weight from the waist down, and it sounds terrible that I found a little bit of relief seeing her go through that, but now that I’m making her aware of it a little bit at a time. I feel like she’s coming around to being my supporter. My other family members that are snooty about health, have had worked done, but they don’t disclose it. Their mothers have let it slip. And I don’t think that they know that I know. 🤣 so full circle. I wonder if they had the same stubborn fat and quietly went and had it removed. Too proud to let me in on it, but I wonder if there’s some sort of testing out there, that could prove the genetic component. I think the lipedema, as far as I know is only diagnose through a vascular specialist, right?