It seems like the harder I exercise, the bigger I get, is this anyone else's experience? It's like some kind of wicked catch 22... if you don't exercise, you gain weight.. if you do exercise, you gain weight even faster, it's like living in the twilight zone.
This is definitely true for me. And my pain also increases with exercise. I have been fighting eating disorder since I was thirteen and when I starve myself, I gain weight. I had a gastric sleeve done in 2010 and after that the lipedema exploded, all symptoms got so much worse. Doctors keep insisting on sending me to their dieticians and they tell me they can't help me, because my diet is pretty much perfect. Where I live (Sweden) healthcare doesn't treat lipedema, it's not covered by insurance, and since I'm too sick to work I can't afford to pay for surgery or any other treatment. Sometimes I'm actually looking forward to the lipedema getting so bad it shuts down my body completely. :/
I noticed my joints getting weaker when I began doing weight training on my legs. I avoided it for so long and opted for walking to slim my legs, but then when I took a chance in attempt to build some muscle to support the ‘flabbiness” I had that resulted from the edema, my joints began to click the same way I see in my mother. It has been 2 years since I’ve stopped weight training and they still click, my knees and hips. I suspect there to be some joint damage, especially because my knees just feel very ill supported and weaker.
@@LoveLeeMeJenny I also notice in the times where I eat less I might thin a little but then shortly after (what feels like out of nowhere) i appear like I’ve gotten bigger and it’s very stressful
Hello Desimber, from doing my own research I found that water aerobics is best for lipedema and low impact excercise such as walking at a steady pace on a treadmill for about 20-30 minutes without incline. When I was going to the gym, I noticed my knee begin to swell and I got a bakers cyst behind my knee.
I believe I'm the centralised type but no pain when sleeping but in the groups of diagnosed people, some have no pain, some have lots. I sometimes get excrutiating pain with blood pressure readings which nobody was bothered about, I get Plantar Fasciitis pain and had Bursitis for 18 months and the possible Lipoedema areas are kinda tender with pressure. My arms are horrific, I don't know what started it as I never used to look at myself in the mirror and hated my legs but don't know why
Anyone know where I can get some decent compression leggings? I have horrible pain in my legs. I guess you can say after watching this, I have more classical lipedema or lipolymphedema legs and arms. I fall down all the time because of my knees. But I can't find compression that works. Because my legs are so big and I have a smaller waist. I have to have compression. I used to get the maidenform leggings 1644 Get the skinny. But they stopped making them. Then I bought sigvaris. Way to big on waist and tight on legs. Ugh.
Hello, yes. There is a woman on You-Tube. Her channel is called Sturdy Woman. She has an excellent playlist of the best compression garments. I'm confident you will find what you need.
I have had lipodema / lymphoedema for 54yrs. Only care managed now and the process is slow. I am having my legs bandaged every day for 2 weeks in an attempt to help with the swelling. I have many large purple warts which is disfiguring. I am in pain 24/7. I cannot walk well and have poor quality of life. I asked if I could have my legs amputated. That would be my better quality of life. I live in England United Kingdom
We are so sorry to hear you are in so much pain, we know how hard this journey is! Our doctors do offer virtual consultations for those who do not live close, if this is something you would like to explore please give us a call at 888-LIPEDEMA or email Hello@TotalLipedemaCare.com
Thank you so much for taking the time to give us this valuable information!!! It has been such a depressing and defeating journey to go back and forth to the doctors only for them to diagnose you with "Obesity due to Caloric Intake" without knowing ANYTHING about your lifestyle! They literally diagnose you on sight with Obesity and everything they do centers around that, they don't listen and they don't believe you when you tell them you are not eating a ridiculous amount of food or that you're very active, it is so depressing! Thank you for empowering us with information and performing life changing procedures and services that allow us to survive this condition!
I agree. One doctor diagnosed me as eating too much sugare based on one question. What do I have for Breakfast. I said wholewheat toast. I make bread and you can't put too much sugar in the flour because the dough would not rise. too much sugar kills the yeast. Diagnosed as morbidly obese, Many doctors in the UK are ignorant. They are more interested in sugar intake and become paranoid. So we have a sugar tax on soda fizzy drinks.
Learning about Lipedema has given me so much validation in my body. I have never seen my body type represented in the media, and always wondered if it was because I was too unattractive for the media, or if I was just the only one who looked like me. Seeing all these pictures if the different "stages" and types has completely changed how I feel about my body. I still struggle with body image, but I don't blame myself so much anymore. I know now that I can't exercise my way out of the way my legs and arms look, and that I can only do so much to change the things I don't like. It's also changed the way I eat, I'm having a much easier time choosing healthier foods because I know now that avoiding inflammatory foods to help manage my pain, and that's helping my overall health. It's been really hard learning more about this condition, but I'm so grateful to know now that I can only do so much, and that it isn't my fault. Thank you for sharing this information ❤ (Also BMI was rooted in eugenics, and was meant to be used strictly on a mass scale, not on an individual level. It's so bad, and I hope the system changes soon to measure overall health.)
The Germans are more educated on lipedema! I have been listening to seminars for a few years now that are all from German doctors. So sad my own doctors don’t know about lipedema. This could have caused me less pain and frustration in my life. Don’t know where to go for help in my old age 😢
I am in the same position. Germans are educated and have built a rebounder / trampoline Bellicon which is supposed to help with lymphatic drainage. I have researched for 2 years and I have ordered a Bellicon rebounder as my desperate attempt to manage lymphatic drainage as my condition is severe United Kingdom
You made me cry, in a good way! :) Thank you so much for this! I am 53 years old and just recently diagnosed with lipedema, I self diagnosed about a year ago and have had RFA for venous insufficiency which did not help... Most of my life I've been battling it and beating myself up for not being able to lose the " fat" in my legs. I have an appointment with Dr. Hebst on December 1st and really want to move forward with the surgery.
Hi I was just reading your review and it is so unfair that the insurance will not cover this surgery most of the women that need this surgery have to be of high class with money to pay out of pocket, so many women out there are having to deal with so much pain.... And in Beverly Hill everything is so expensive to be able to cover the hotel for 7days & surgery... It is all about the money!!!
all my life I had very dense breast tissue. Could this have been an early indicator to the rapid progression of edema, fluid retention, and lipedema, after menopause?
You’re so right on the fact that we have to jump through all of these hoops. It infuriates me that I am obliged to pay health insurance up to 200 euros monthly and literally NOTHING concerning lipedema is covered.
In which Member state do you live? I can't think of one where we're obliged to pay any health insurance- apart from top up insurance for single patient hospital rooms or extras.
I’ve always been thin, but each pregnancy my legs would atleast double in size, after breast cancer and a hysterectomy, the pain and size in my legs is awful. When I got Covid, the pain in my legs was so bad I cried every single day for six months. I had to lay in bed with heating pads nonstop. I still have lots of pain in my legs but not as bad as those 6 months. This is hell and nobody where I live seems to understand the suffering.
Laying here in my Lymphapress, sobbing several times while watching this! It is my dream to have surgery from you someday. I truly appreciate this video & the work you do!
My legs look nearly identical to your example of centralized lipedema. I struggle with figuring how to accomplish compression for those rolling parts at the top.
I always said fat was painful and tender whenever I’d feel pain from playful pinches. And I always thought fat felt like swollen grains of rice but I’m starting to think they’re nodules, my legs and arms have always been larger than the rest of me and I’m starting to think no diet and exercise in the world will properly fix it. I’m in the UK, I would like to get a procedure done at some point, have you got a contact you would recommend here? Or does your team offer aftercare/help with accommodation for clients from abroad?
Thank you for taking the time to make this video. I found it very informative and just a little depressing 😉 since surgery really seems to be the best treatment. Of course that is not your fault.😊 I am from Montana self-employed and will never be able to afford insurance that would cover this. Going Through menopause and just trying to stay where I'm at and not gain anymore. Probably won't work but it's all I can do. Going to watch more of your videos, Thanks again.
I’m going to switch to Aetna supplemental in October. But from what I’ve read insurance companies want to see you’ve tried conventional treatment first like compression, physical therapy, massage in order to review and pay for lymphatic sparing surgery along with 2 doctors to confirm diagnosis. Is this true?
Is lipedema influenced by low thyroid function? After I turned fifty, doctors kept lowering my thyroid medication; I began to get more and more lipomas and swelling. Can't find doctor who understands.
İ have hyperthyroidism But my weight gained every week Every doctor i met, they wonder why i gained weight. İ just found out that i have lipedema few days ago. People kept saying i don't eat right. İ am not exercise. İ eat junk food. İ tried many diet(healthy diet) But i still gain weight. İ also exercise. İ walk a lots. Makes my left foot having joint pain. İ do simple exercise home now.
My son was diagnosed with EDS his doctor said I have to have EDS if I have lLipedema. According to him not everyone with EDS has Lipedema but everyone with Lipedema has EDS. had I am going to ask Dr Jamie when I meet with him Tuesday. Men get EDS so of course it is know and treated.
I had the privilege of being seen by Dr Herbst in Tucson and I'm currently following her recommendation of care. Originally I was totally against ever considering surgery but after listening to your presentation I understand better the medical reasons for it. Thank you for such valuable information. I'm in NY. I sure wish you weren't so far away. 😞
My limbs blew up During my severe covid. Gained 20 lbs in three weeks. Could not get it off. Over two years later I get diagnosed with Lipedema by lymphatic specialists.
I try not to self diagnose but I feel like I may have lipedema or even Dercums. What kind of Doctor should I be seeing to even start? Of course after I see my PCP.
I was diagnosed by a vascular surgeon. My PCP referred me to have a scan done to check for blood clots because of the leg pain I complained to her about. You can also try going to an endocrinologist. But really any doctor can diagnose it, they just have to have knowledge about lipedema, and unfortunately, there are more doctors who don't know about it than there are doctors who do 😢
Hi! You will want to make sure you see a doctor who specializes in Lipedema, unfortunately, there still are a lot of doctors who are unfamiliar with this disease. Dr. Jaime Schwartz is one of the few who specializes in Lipedema & Dercums.
You guys need to be using Korean fat dissolvers European fat dissolvers even though it’s not really fat it those fat dissolvers help the body to expel fluids and if there is fat there, it helps that the ingredients help to weaken the adipose cell walls and so the fluid can then come out and the body and it also cleanses the liver those fat dissolvers cleanse the liver of fatty liver disease they’re so good for your body. They have naturally occurring ingredients things that can already be found in your body but maybe people that have these diseases don’t have the proper amounts or don’t don’t have enough to fight this or maybe certain areas of their body, don’t get don’t get it or maybe like because you said they have more fibrous tissue, their body than natural occurring things like the stuff that’s in the fat dissolvers the strength of it is not enough to treat the way our body would naturally treat those virus or abroad, cells or tissues And I completely agree with you. I was trying to figure out what was going on with me because I was I got down till like 19% body fat my lowest as an adult lifting weights working out like a beast lost all the fat in my face all the fat in my upper body in my my calves and my knees I was in the best shape of my life, but I had caused myself to lose all of my good fat, because I was trying to get the glutes of my dreams, and I didn’t realize at the time that that wasn’t possible for me because of lima And remember when it became an issue fourth of fifth grade I remember fifth grade when things changed whenever the same and it was embarrassing. I didn’t understand why my legs look different than my best friends I didn’t understand we ate the same things we did the same things. I was eating a lot of processed carbs at the time we were eating a lot of baked goods my mom was a huge fan of baked goods even if they’re just the kind in the store my mom has lima she has cuffing. Hers is better now because she stopped eating so much garbage But she never thought to go and ask what it was. She was embarrassed. She thought it was something that she had done her dad had it but it’s definitely not in stages. You are correct it’s I believe people who eat things that their body is not agreeing with any processed carbs and flour things like that Really cause you to puff up and cause your you be insulin resistant basically so anything that you eat even if you’re not eating more calories than you should I just heard a doctor say this today when you’re eating the trash calories no matter if it’s within your calories number It’s getting stored as fat because you have built insulin resistance because of the processed carbs that you’re eating. I started taking Ben Photomyne Revol carnitine, alpha acid and niacin three times a day and also NAC for detox and that has seem to help more than anything else that’s just a few of the supplements, but those are specially helpful because they help with the fat storage, the sugar storage higher your body uses the excess sugar or any of the sugar that you’re eating because I was even noticing the insulin resistance in my skin on my face I was getting the, whatever those sugar wrinkles are just the lines I think they’re just called striations maybe I don’t know they’re called but you could see them you know on my face it wasn’t really in places of. It was in places where that were the skin was hollowed, so it was like where the skin was like. Stretching I guess Anyway I hope this helps but I completely agree with you and I’m so happy that people are trying to figure this out because this affects so many men and women and is so embarrassing people just give up and they just they think it’s their fault so they just continue to eat the thing that’s causing this and then it just gets worse and worse than it gets just out of control where you just wanna hide and you You wallow in your self pity burying yourself and more food it’s in so I just wanna say thank you thank you so much and if you ever you know, want to pay me to come do research with you I live in Missouri research is my favorite thing and I am not a medical background But the problem solver lol with severe adhd. And An extremely smart mind Trapped inside a disordered brain😢. But I love Jesus
You are an amazing human being. Thank you for all of this information ,it is so greatly appreciated. Bless you . Through Christ All things are possible and he first loved us all🙏.
Diagnosed with Lipo-lymphoedema in October 2023 - apparently had undiagnosed lipoedema since puberty and I'm 75 now! Was told this is why secondary lymphoedema has also been diagnosed. My question is this: Lipomas are frequently mentioned in lipoedema articles. Does anybody know if there is any connecton between lipoedema and angiomyolipomas - benign kidney tumours, as I have 5 and am awaiting an urgent referral to Urologist as one tumour has grown to 4 cms x 3 cms x 2.9 cms so treatment may be needed.
I am in stage 4 so my legs are very large. Have you done surgeries on very large legs, and if so, can you please post before and after pictures of larger leg outcomes? Thank you.
Hey Peggy, MLE is a signature extraction I use. It’s part of the process when trying to achieve Lipedema removal with good results. All my patients receive it, and none have had a problem. Feel free to reach out to us if you’re interested in a consultation 😊totallipedemacare.com/facilities/
And above, I mentioned, the Korean fat dissolvers a European fat dissolvers, but it’s really just Mesotherapy and the ingredients used in those treatments. It really is an amazing way of treating the body.
Thank Ellen, glad we can help. We just like to get as much information as possible so people are more aware. Click on the description drop down and you can click between topics if you want to revisit specific topics 😊 trying to make it easier for everyone 😁
I don’t know if I have it but since I was a teenager I’ve never been able to do back floor exercises it’s so painful 😣 I can’t even try unless I have a whole pillow under my lower back. Mind you I have no back pain whatsoever. It’s so bizarre
I had always suspected that because I’m currently ‘stage 1’ that if I were to get pregnant or when I get to menopause the condition would ultimately propagate to stage 2. This webinar really helped clear up a lot of misconceptions I had, thank you so much 💛
Oh so getting pregnant or menopause won't make lipedema worse? I also have "stage 1" lol. Started after puberty. I want treatment and I'm worried that things like pregnancy and menopause would "trigger" the lipedema and I would have to get treatment again. I'm still watching the video but I'm wondering if he addresses this at some point? Is what I'm saying true or is it a misconception?
@@GossamerWaits what I got from the video was that some people can stay at a certain stage their entire lives, but unfortunately I’ve seen a lot of cases of women where their lipedema grows like crazy once getting pregnant 😔 judging by the look of my mother I think Id be inclined to progress to stage 2 unless I REALLY took care of my body during the entire pregnancy (focus on my lymphatics and eat high fruit which is the gentlest on the body in terms of digestion and is best for clearing the lymphatics)
Sorry Misty, unfortunately we do not. We have a doctor in Tucson and in Beverly Hills. If you’re interested give us a call 😊 totallipedemacare.com/facilities/
Hi, I'm 120 lbs, my lumps hurt all over my legs abdomen and arms. At only 54, I hurt everyday, and laying on a heating pad taking hot baths, helps for a minute, but lately my legs , hips are throbbing where the lumps are. Please, what can I do to get rid of this pain?
I also have this pain. I recently began something called block therapy-painful during the exercises but wonderful after-myofascial release and vibration plate therapy. Both of these have eased pain and assisted circulation.
I use a massage gun everyday, and have seen results. Less pain and thighs are smaller. Don't eat process foods, this will help. Eliminate inflammation!!!!!!!
I went for my history/physical today to my Dr for upcoming cataract surgery and had her feel some of my nodules on thighs. She said Dr’s won’t cut those out till they’re painful? What?
Hi! You will want to make sure you see a doctor who specializes in Lipedema, unfortunately, there still are a lot of doctors who are unfamiliar with this disease.
I don't know what to do? There are no Doctors where I live that know anything about this. I have mentioned this for years to many different Doctors. I don't know how to even start but that for over 20 years I have been feeling these hard things under my skin it started on the outside portion of my left leg and my husband could even feel it. At that time I was not that overweight at all. Well, I ended up getting the lap-band surgery because I was gaining "weight" and I lost lots of weight but its because I was throwing up everything other than fluids. The Dr went back in to look, and it ended up being an extremely long and complicated procedure because my body had grown scar tissue around the lap band and my stomach was like a cocoon of scar tissue with the lap bad stuck into my stomach. But I have had a horrible problem with scar tissue after surgeries. I have been diagnosed with Lupus and Fibromyalgia and arthritis. I will look like I gained 50lbs in a month sometimes and my rings wont come off. I have pitting edema in my legs almost all the time. The fibrotic nots in my leg are way worse with a rather large on on the back of my left leg looking like a huge muscular ham string is I think what they would call it. I also have vein problems, they can very rarely get an I.V. when I am in the hospital and for several surgeries they put in a pic line, and I woke up from one surgery and was drenched in blood because the I.V. they did get blew in surgery and they tried to get a central line in me and it was critical they ended up having to give me blood I did not know anything about it until after surgery when I felt this hot wet on my nightgown and looked and it was soaking in blood. Anyway, my legs ache all the time sometimes it feels like from my hips down its unbearable sometimes and hard to sleep or keep my lets still. The best way to describe it would be like a horrific tooth ache but in your hips, legs and down to my feet and the nerve pain in my feet have started in the last few years and discoloration of my feet very reddish purple. My husband can feel those nots under my skin they feel like a little pea, or some feel larger like a hard dry lima bean or like that, he will massage me because I do know that is helpful long term even if it hurts while he is rubbing them. I have had one lymphatic message and I felt like I lost 20lbs. You can look at me and tell its so much fluid, even the doctors have put me on so many diuretics because my blood pressure stays through the roof. But they only offer slight relief. I am NOT a big eater; in fact I rarely eat a child sized portion and often will only eat one true larger meal in the day and only eat a light snack like fruit and cottage cheese or vegies for evening snack. In other words, my eating habits do not align up with my weight. I have been a dancer my entire life until I was in my middle 20s. And I thought maybe that was why my legs hurt so bad. I will be 53 this month and I feel so old. I cannot feel my feet up into my legs. I feel so tired ALL the time, I used to by so hyper and loved to clean up the house and go outside and do yardwork and I noticed about two years ago I just could NOT do the things I have always been able to do. Like gardening and cleaning my home, and especially I love to vacuum, and I cannot do it anymore. The Dr just say its my BP but I take every pill they give me, and I am so careful not to take in my sodium and try not to eat any fast foods. I feel so young in my heart and mind, but my body is not working with me. I also have the worst memory. I don't know where to turn but you tube or internet
I have stage 1 lipedema It’s a family thing but all of my sisters mom etc have stage 3 4 because they are overweight or obese . I have never been overwight and i have always worked out . The thing is , once you gain weight it grows like crazy and there is no turning back . That’ s why I Watch my weight religiously and i am 36 and havé Two kids . Same in my country doctors don’t know anything about this
My thoughts and prayers are with you I feel your pain ,I just texted a novel of the list of medical issues I have, and there is still more ,I just can't see good anymore to keep texting on my phone 😢 big hugs to everyone on this Chanelle, may all if us be healed , I can't heal myself or anyone else, but I sure can and definitely say prayers for everyone 🕊your new friend Meredith from The Live Free or Die State of New Hampshire ❤
I have worked out my entire life and could not figure out why my legs are so big. I have always known I had my paternal grandmother’s legs. With this knowledge, now I realize my grandmother had stage four.
I would like to see more providers who are willing to work with Medicare. I was unfortunately diagnosed in my 70’s and being on a fixed income makes it difficult for out of pocket costs. In my family we called it the Fodderingham curse because my grandmother had it and my mom too. I am still trying to find a medical center or doc that will bill Medicare.
My internal medicine Dr. Doesnt think this is a real disease. He told me to diet and exercise but i have been doing that for a long time, still have tge same problem.
Feel sorry for you. I live in the U.K. and told there is no money in the NHS to treat me. then I get a phone call offering me treatment 54yrs too late when my lipodema /lymphoedema has progressed to severe with massive swelling and purple large warts all over the lower leg and I have swollen feet, I asked for amputation because I am in too much pain and no support. I have suffered like this for 54yrs.
I realize this video is a year old while I'm commenting. I have had great results going strictly carnivore and butter. My pain is less, my body is smaller, down from 22+ jeans to maybe a 14, I'm swimming in my 18's. My calves have gotten bigger by a little. But the rest of me is smaller. I started by fasting. But as I re fed keto, I'd gain inflammation again. Then found oxalates, and carnivore. Lion works best for me. I feel better, have more energy, can walk a little better. But you do you... just food for thought, I help where I can. Ah, and I also started wearing CZ Salus compression leggings, rebounding and a foot massager. I want a full body, stand on vibration plate.
I got Lipedema from severe Covid. My limbs blew up I gained 20 lbs while fighting covid over the three weeks. I now I have long covid. I’m convinced that Lipedema is driving long covid
Lipedema is a genetic condition that causes connective tissue build up, most often starting around puberty. I think you might be confused with lymphedema. That is an issue with the lymphatic system that can cause severe swelling. 1:10:35
@@AngelMama No I am not confused as I am very well versed in both Lipedema and Lymphedema and other scientists are starting to make the connection in the Long Covid communities - now there is most likely I had lipedema and did not know and the covid nfection drove it - however covid is also a vascular disease- scientists in Australia have already made the connection and I am on the forefront of Long Covid advocacy and there is a link here. Leaky blood vessels seems to be the problem- also Lipedema has MCAS AND POTS associated with it which is a driving force in Long Covid and to take it a step forward some scientists would argue that Long Covid and POTS are the same thing.
I am overwhelmed at how much you are describing everything that’s going on with me I have stage 4 and obesity with very little help from the medical community here in N.Y I given up now I have a bit of hope I will reach out to you very soon
I’m 28 years old and I have BRCA2 and I’m 99% sure I have this too 😭 as I’ve had swelling in my lower legs since high school. My mom and grandma passed but they had my legs as well. I believe it was a cardiologist I met with in high school that my doctor recommended, since she couldn’t believe I had swelling in my legs below my calves when I played competitive soccer. I did an EKG, and did tests for my veins and arteries, everything worked just fine. The doctor said it could be a capillary issue potentially, but said I have edema and just have to live with it. It sucked. So for years I just accepted it. I played soccer through college too and the issue never got better. Can’t tell you all the things my athletic trainers tried to help but didn’t work or solve the problem. You can feel the nodules on my shin bones easily and that really started in college. I would say my case is very mild compared to most, probably stage 1. Thank you for putting this out there though. I wish I would’ve known about this years ago 🥹
