I had breast reduction surgery in January 2024. In my post surgical notes, the surgeon noted, "Stage one lipedema legs." I never heard of it. Did some research, and yup! The issues with my legs (swelling and weird fat deposits) and too big for my body arms. I just thought I was built badly, and it was exacerbated by my Lupus disease. Nope, lipedema. My rheumatologist and primary care doctors told me there's nothing to do about it except to lose weight and exercise. They were wrong. Lymphatic massage, dry brushing, low carb eating, and castor oil massages are starting to make an improvement. Keep healing ladies!
@Emblem3Fans welcome to the club! You found your people! The good news is that now you know there is a lot you can start doing that can improve your symptoms. My conservative treatment playlist provides some inspiration ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html
I’m 68 and have spent my entire life hating my atrocious legs and upper arms I now firmly believe I have lipedema. The mention of the pain when pressure is applied ie a cat or puppy walking across my lap has me utterly convinced.
I'm ready to cry. I had no idea. What a complete list, Calves, boots, even at 16 and 125 lbs and 5'8", flexibility (I can palm the floor at 52 with no streatching, , people my knees hyperextending my knees, TSA, hips and arms, I also had swelling once after a long flight, but it lasted for days, huge quads, a nodual on my arm, dogs walking on me., bruising, blood pressure cuff issues, .. doctors never said anything .. :( I'm so sad I lived so long not knowing and feeling. I've lost 45 lbs and I'm currently fighting to keep Mounjaro. Now that i know this I know that I'm 100% the body type. It is so noticeable. I can't believe that Doctors really ignore people who have weight issues. I'm literally crying right now. There were signs 30 years 150 lbs ago. Years of paid, struggle, guilt. I really can't believe that not a single doctor knew.
We know exactly how you feel @Robin94123! Lipedema so common you see it everywhere once you know the signs, yet doctors just don't know and, if they do know, they don't think there's any hope. Have you found my conservative treatments playlist? ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html There are a lot of things we can do at home to start feeling better. Let yourself have as many good cries as you need to first, though. I certainly had grief over "what could have been my life" at the beginning of my journey. The good news is you found your Sturdy sisters ❤❤
At 67 years old and just now finding out about this...I know how you feel. All the years of beating myself up for being "thicker" than everybody else, all of the sparky remarks about my weight and my big arms etc., all of the sadness at what could have been especially now since I'm older and feel like I'm climbing an uphill battle to try to fight for myself while feeling awful every day.
Boots. Yup. Wings. Yup. Blood pressure cuff. Yup. At 80, it's most likely too late for me to pursue the remedies. But will begin investigating. So psychologically freeing to finally understand... after decades of fat-shaming...from doctors and elsewhere. Thank you!
There are people in their 80s that start a keto or carnivore diet who lose large amounts of weight and who reverse diabetes and autoimmune disorders. It may be worth a try even if you simply lose some weight and are less sensitive to pain.
@raedarden9830 it makes a huge difference doesn't it? Just knowing that you aren't crazy and there IS something wrong with you. Sending you big hugs. As others have said, there are still things you can do that will improve the quality of your life quite quickly. Have you found the videos in my Conservative Treatments playlist? ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html 💕
My Lipidema started about 20 years ago. I was married to a terrible narcissist and the trauma caused it. I wondered why I had the nodules on my arm "wings" and thighs, and why they were so much bigger. And, the pain was so severe! I'm working on it now by going on bio-identical hormones and eating carnivore.
@@joanneclark8256 Mostly because clean meat (grass-fed, grass-finished, organically-raised chicken, etc) has no hormone disruptors in it and is the healthiest way to eat.
It's not for everyone, it's expensive and has risks however, the thing that has worked for me (my "thunder thighs with extra saddle bags") was liposuction. I know this is a controversial idea but I decided to try it. It took 3 proceedures and has helped me enormously physically and emotionally. Again this is only my personal annecdotal sharing and is not for everyone but maybe can help some. Love to everyone here, the challenges are real and difficult but you are an entire person, not how society perceives you to be. Be well.
@@gloriagi9499 I hadn't heard of cavitation, so I looked it up. In the description, it says it can leave an uneaven, dimpled effect due to the fibers that hold the fat in place. In addition, it says that cavitation isn't very effective for cellulite. I'm wondering if anyone can report with personal experience using this method for lipedema.
I don't have lipedema. But I like to be educated. I love learning more and more about the people on this planet. It makes me so much more connected to everyone. We are all one. I have had my own mountains to climb too. So I totally understand feeling despondent when facing something that seems insurmountable. I wish everyone light and love on your journey. One day we will get to a place where human beings don't categorize and judge others, or give special privileges to 'the ideal person'. One day we will all be equal, so that when a condition like this arises, we can pay attention and help our brothers and sisters in need with the goal of ensuring sound mental health for all. xo
I wanted to make a second comment. Most people (it affects not just women) have it at quite a young age. When I was 24yrs old I quit smoking and it changed my hormones enough to trigger my lipedema that was laying dormant in my body. Before that I had a really nice figure with no pain or issues.
I’ve discovered my lipedema does not like squeezing or heat. Before I was diagnosed with lipedema, I was diagnosed with it’s buddy lymphedema. And was signed up for lymphatic therapy. And we did the tight wrapping on my legs. Which after an hour would become very painful. Heat along with a really horrible burning sensation would take over my legs. And although my therapist urged me to keep the wrappings on anywhere from 1 to 3 days, I only made it one day a few times because I couldn’t take the pain. And stranger still, my leg measurements “to see how much liquid we squeezed out” barely went down. That was when my therapist remembered another therapist who visited the hospital and talked about “lipedema - the painful fat disease”. And after some research, she told my doctor about her findings. And I was diagnosed with lipedema officially. All that aside. For most of my life, I’ve always had a lot of discomfort when the sun came through the window and rested on my legs during car rides. It felt like my flesh was sizzling and I couldn’t sit still until I found something to cover my lap. My family always teased me about it no matter how much I insisted it really hurt. Now I know why. And why getting too hot makes my legs and back hurt. I hope someday I can get treatment for the lipedema. Keto does not agree with me. 🤷🏼♀️
@@2okaycola Lipedema is resistant to dieting. Although some have success with Keto, which as I said in my comment, doesn’t work for me. If you’re going to troll, please know about the subject.
The subject of lipodema is similar to domestic violence in that it has been unmentionable. Generally men don’t get it so if it doesn’t affect them it’s not worth talking about. The whole issue of women’s bodies have been undervalued or not deemed necessary to explore due to gender bias. Well done, Rebekah
Sigh. Here we go again with the misandry crap. It's getting really tiresome. Maybe you should do a bit of research into how many medical advances have been invented and developed by men in the last 300 years as compared to women. Get that chip off your shoulder and stop blaming men for your problems.
@@wingnut71 I think you missed her point. No doubt that men have made beyond count advances in science and technology and every other area in human existence. That was not in question. Pretty much every science, medical or institutional study has been done on MEN!! Yes! There heart, liver, brain, energy, hormones etc etc etc. There have been more studies done on women but this is in the infancy compared with men studies. Some women studies were conducted off of the men’s studies. Look them up. We need to catch up.
@@wingnut71 I agree the initial comment is dramatic, domestic violence isn't really comparable to gender bias within medical practice although they are both very real issues. However your argument is a double edged one, men also suffer from gender bias when they have a typically female associated disease, furthermore OP's comment that diseases effecting women are typically under-researched is correct, while making no comments that suggest they are upset that men have developed medical advances, rather the opposite that more medical advances are greatly desired! No doubt the gender of these pioneers is less important than the research they contribute to society.
I have Lipedema, I have been through physical violence 50 years ago from a (many years ago divirced) x-husband . They are not the same thing! I am so sick of brain washed women whining that it's all men's fault, NO IT ISN'T! We as women make BAD choices...wanting the bad guy because they are exciting! We as women & men as well need to RESPECT OURSELVES! Realize, God loves you He made you to love Him and find respect for yourself, because you are LOVED by GOD!!
I've had a doctor in a weird mood (very rude & brash) do all of the hypermobility tests -- I knew what they were -- and I DEFINITELY am not hypermobile which other doctors have confirmed -- and he just kept saying I am. I'm literally not. Some doctors are great, other are capricious psychos for no reason and it's scary.
YES! On especially the boots. I have the other symptoms too but it was a kid of fun affirmation when you mentioned the boot thing. I’m 66 and still remember trying to find boots when I was in high school. I appreciate you and this group of women that are helping us find our way through this.
Hi Kait! I am happy to report that about a year ago I bought my first pair of knee boots. Torrid has nice extended calf ones with some elastic that makes them forgiving. I honestly cried. When I lost weight previously through the cut-calories-and-exercise routine it hadn't changed the size of my legs... but keto did. Now I want to go put on my boots and prance around my living room *right now* :D
My late father was part of the engineering development team of TSA SCREENING and Whitehouse Security equipment. You're correct, the machines have fluid sensitivity sensors. It's usually a percentage. I raised the issue of my hip reconstruction setting off old-style TSA and not with New. But then the development of my Lipedema it started again. My Dad explained the engineering and software ranges.
That’s very interesting. I wonder if that’s why every dehydrated person whom I know (like my Mom, who is extremely dehydrated!) more often than not gets a beep. I wonder, is it a visual map or is it a percentage of fluid by weight?
I am wondering if there is also an outline component....? Since there are such abrupt changes at the ankles, wrists, and knees? Looks like you packed something tight and wrapped it up, even though it's just your own fat.
It feels so good to find out what is going on in your body when you're not sure what is happening. I expect lymphatic massage would help with this issue, as it helps the body remove excess fluids from body tissues. The lymphatic system distributes lipids/fats, so it makes sense to get hard fat deposits/lipomas in areas where the lymph system is congested. I'm a massage therapist and lymphatic massage is a favourite in my practice, it's very gentle and relaxing. And the best thing is you can do it yourself. I would recommend learning this easy technique to add it to a self care routine. Also , emotionally, the lymph fluid stores unprocessed emotions. Don't know if that helps, but I thought I'd mention it. When you clear out the lymphatic system you feel great. It's a fluid system so hydration is very important so lymph fluid doesn't stagnate. Good luck to all the ladies here.
Commenting 3 months after you posted this, wondering how your clients perceive the pain of lymphatic massage? I can hardly tolerate touch on my legs and bruise easily all over but especially on legs - long lasting, painful bruising. I'd love to try lymphatic massage but wonder if I'd a) tap out from pain b) end up looking like a plum c) both
Omg, I checked the first few boxes you listed off, but when you got to pain with small animals walking across your lap... I never suspected I had lipedema because I have just always been overweight, and fairly proportional. But now I think I do have it. As I have gotten older, the hypermobility has become more problematic. Thank you for bringing awareness to this!
I just started hearing more about this diagnosis. I definitely have this!!!! Wow. Also, worked at TSA. The body scan does NOT detect water weight or water in our bodies. The technology is created to scan a “Normal” size outline of a male or Female body. There’s a button officers select depending on gender. If the officer (by mistake) selects female for a male, the person would alarm between the legs, because the system expects to detect a bulge in the crotch area. Any abnormalities outside of that outline will alarm. Most overweight people alarm in the stomach, legs and back area if there are creases, folds or bulk skin. (Please don’t take this as insult to overweight people). I’m overweigh and when I fly out I alarm in the legs area.
These symptoms definitely don't sound like me, but before seeing your video in my suggestions I didn't know what lipedema even is, so it was good for me to learn something new today! 😊
Lipedema has to do with estrogen stored in fat. The liver can not break down and eliminate estrogen without the mineral selenium. I suggest supplementing selenium and staying away from soy products, grapefruit and seed oils. Increase your saturated fats Edit Someone in comments pointed out that you need to take the correct dosage of selenium and I know it is true for zinc that taking too much will cause cells to close down and not accept zinc (probably has to do with cofactors we haven't identified that are deficient) With zinc you need to take around 50mg daily. The standard dose in literature for selenium used to reduce your risk of breast cancer is 200mcg. Please do not take mega doses hoping your body will heal quicker. It will take time for your body to break down estrogen as it accesses fat storage. There is not an overnight cure. God bless "What blocks absorption of selenium? Smoke cigarettes. Drink alcohol. Take birth control pills. Have a condition that prevents your body from absorbing enough selenium, such as Crohn disease or ulcerative colitis."
Very good advice, Carrikartes ! Maybe taking some iodine might help too, as the thyroid need it for your hormones to balance. Dr Eric Berg and Dr Mindy Pelz both have some good ressources on their channels to help with eating right and balancing the hormones. Maybe you should also try to avoid pollution in your home, all the products that wreck the hormones are everywhere. (mostly plastics, ban them from your kitchen at least)
This is really interesting. Where did you get this information? Google isn't helping me! I have Gilbert's Syndrome which means my liver doesn't break down estrogen properly and I'd love to find out more
@@Melstarry my husband had interstitial edema and I was researching about that. It took 3-4 days to find out about that. I have found and along the way I found out about lipedema. I usually start with the problem listed first and deficiency listed next (edema is related to what vitamin deficiency?) Gilbert syndrome is related to what vitamin or mineral deficiency? "Vitamin levels Studies conducted so far suggest that subjects with GS may have lower levels of vitamin D and folic acid than control subjects, having these levels inversely correlated with bilirubin levels." In that case I would start by getting methylfolate (you probably have the MTHFR genetic variation also that slows down methylation and taking the unmethylated form might actually make things worse). Recently I have been researching a little on using pure lanolin topically instead of oral supplements but I need to research that more, for now it is a theory. Calciferol is the activated form of Vitamin D and I am wanting to get that for my husband or maybe some transdermal patches. I believe I heard a doctor on UA-cam mention that the liver uses selenium to break down estrogen in the liver
@@Melstarry I heard a doctor mention it in a talk/lecture. I was researching my husband's interstitial edema (took me about 4 days to find a solution) and along the way researched lipedema. The doctor mentioned a deficiency in selenium in relation to lipedema and I knew about the storage of excess estrogen in fat for a long time already so I researched more on it. I usually start with the problem and look for deficiencies related to the problem. This has greatly reduced my research time. For you I found this "Vitamin levels Studies conducted so far suggest that subjects with GS may have lower levels of vitamin D and folic acid than control subjects, having these levels inversely correlated with bilirubin levels." So supplementing with methylfolate would probably be best. You probably have the MTHFR genetic variation which impairs methylation (@60% of the population has it). All non organic grains are fortified with folic acid by law which can further slow down methylation in people with MTHFR. So only organic grains or better yet cut out all grains. I would also buy calcifediol the active form of vitamin D. It can readily be used by the body. You probably also have trouble converting vitamin D to it's active form. Always good advice to go as low carb as possible when dealing with any health issues and avoiding all seed oils. God bless
I work at the airport!!! 😳😳😳😳😳😳,, I just literally fell out in the floor when you said this about the airport! And oh my gosh!!!! It's become a running joke how much I set off the full body scanner!!! I have already had a total knee replacement (the week of my 49th birthday) , so I have to go the full scan every day at work and my thighs and upper arms set it off All the freaking time!!! I know I'm using a ton of !!!!'s but I can't help it right now, you just blew my mind in so many ways,, BEFORE,, you even said this part!!!!!!!!!
A late (self) diagnosis is better than nothing! My doctor confirmed it. Health history: Auto collision brain injury in 1999, but no diagnosis until 2012. Diagnosis of Fibromyalgia in 2001; hypermobile EDS in 2011, but last few months I stumbled across lipedema. Learning that lymphatic drainage treatments are very helpful!!!
This just blew my mind. I clearly need to do some homework and make a doctor’s appointment. I can’t believe this…to think I learned this from a random UA-cam suggestion 🤷♀️
I always approach those conversations like “I found this on the internet, my symptoms line up. I’m not diagnosing myself but these symptoms are a concern for me and I’d like to discuss this possibility”
All signs and symptoms you are describing are about ME! I'm new to it and I'm 58 I just opened this whole lipedema planet for myself, and I'm thrilled that it is not just me doing something wrong or eating, not healthy, or being lazy towards exercising, etc. Thank you, thank you for being so open about yourself. I signed up for your channel, and I'll be watching your videos now backwards 🎉😂❤ P.S. My mom had it and never knew about it. I wish I could tell her that now. She lived with pain her entire life. RIP mommy...I miss you. P.P.S. my bruises, pain during BP measuring, my small pooch walking over me or on me, pains during ultrasounds from touching me with pressure. People grabbing me by hand above my elbow can here me scream a mile away...I will yelp from sharp pain. Some people think I'm a drama queen... my thumbs are very bendy, so is my legs( I can lift my leg up to my counters even when I was very pregnant and I'm not a gymnast). 14:28
*long comment alert* Wow! You explained it better than any website or seminar I have watched. I’ve had a bigger lower body for as long as I can remember. And bigger arms. But I just recently discovered what is called lipedema and I have almost all of the symptoms. Especially the part about the blood pressure cuff (it hurts sooo bad and always raises my blood pressure!) And an animal on your lap. My dogs are under 30lbs but when they jump up on me when I’m sitting on the couch I am like ow ow ow please don’t stand on me … because it is so painful. I have been trying to get to the bottom of why my weight won’t go anywhere fast (unless I take extreme measures) and I finally think it’s time for me to find a new general Doc that can help me. I have a hard time getting through to my current doc. There are so many more things I am looking back on now that all of a sudden make some kind of sense. Thanks so much for this, I am so glad I came across this channel! ❤ subscribed!!!
Hi Melissa! Thank you so much for your kind words and welcome to the sisterhood 😆 It's so wonderful to finally know what's going on and even better when you start to find other people who can relate. Good luck with your doc. If he or she isn't helpful... next! Keep looking until you find someone kind and supportive. You deserve that. Welcome to the channel and keep us posted as your journey progresses
The nurse in the hospital couldn't understand why I was fighting not to cry from the pain of the blood pressure cuff. Next day, my arm was purple all the way around. I never knew this wasn't normal. All of these symptoms is me exactly, apart from the airport one. I've never been abroad so never been through TSA. It's lifechanging knowing what is wrong with me thanks to this video. Thank you.
Recently self diagnosed at age 51, followed by educating my PCP she did additional research and concurred. Airport security always means extra attention. Wouldn’t it be great if their technology could be used as a diagnostic tool.
I am so glad you shared this. 100% on all of the signs. I feel so much better when eating well, 16:8 fasting and self lymphatic massage. Thank you for sharing!
After being told that diets don't work with lipodema, I have succeeded in losing close to 30 pounds through 16:9 fasting, riding my bike, and eating a plant-based diet. I am 5 ft 6 inches and weigh 115. I know other people have been successful with Keto. Don't give up hope!
@@patriciagreathouse9840This could make one feel hopeless, if after all this, you still have lipodema. Maybe there's still too many carbs in your plant-based diet?
Right?! I know that September/October fall feeling when everyone suddenly comes out in cute knee-high riding boots and all you can do is dig around for some wide booties 😆👢❤❤
Hi Rebekah, I just found your channel and I absolutely love it! I'm a "Sturdy Woman" too, I'm 65, and highly suspect I have Lipedema. I have an appointment with my Primary Care Doc next Tuesday, and I'm going to ask her about it. Thank You for starting this channel, what an absolute Angel you are. God bless you✝️🙏.
I am 67 and have had painful lumps under my skin for a very long time. I can't have children sit on my lap or allow my cats to walk across my thighs. They always hit the sore spots. I have RA and fibromyalgia, so I always thought the lumps were because of fibro. When I have my bp taken, I have to clench my teeth to keep from crying out because of the pain the cuff causes. I am supposed to wear prescribed thigh high compression socks, but I had to stop because the pain was so severe. I never thought of it being anything with a name, just one more thing I had to endure. So glad this came up on my feed. Maybe I can do something to get rid of some of the pain in my life. Thank you so much for this video.
Thank you. Lipedema was mentioned 3 times in my cardiologist's notes today. Well, if that is correct, it explains my bat wings, the big fat butt bustle, and my legs hurt when touched... I was getting upset with the first diagnosis on the list 'Grossly Morbid Obesity due to overeating". I can gain weight and not eat anything or drink anything but water.
I had a doctor years ago (1963) tell me to quit dieting when I weighed 140 lbs. He said if I kept losing I would be emaciated on the top, but still be heavy on the bottom. I didn't really realize that I had Lipedema until last year (and I'm 86) what it was. The boots are another factor. I never could find any that fit over my calves. I have blamed myself all my life for not having "what it took" to lose enough weight to get rid of the heavier legs. At last I have learned that it has never been my fault.
Yep, had one Dr recommend gut banding, I eat once a day if that, sometimes I can go without food for a week and only drinking water or coffee, never losing weight. So I told the Dr no deal, why would I gut band myself when I virtually starving myself and still don’t lose weight.😳 I am just learning about my hyper-mobility and the connecting issues that comes with it, wish I had known about this 30-40 years ago but it was not a thing then. All us grandchildren had hyper-mobility they knew something was not right when I broke my right leg in ‘76 once I got back to school after a year off I was band from all land based sports which only left swimming. I’m for ever tearing my the tendons in both ankles just reaching up to get something of the top shelf, Dad got a foot step to stop this now😹😹 this has to do EDS something to do with collagen lacking in my joints and tendons without the collagen they can not stretch. I have started ozempic injections and funny enough I have already lost 2kg this is a last ditch try to get the weight of me so I can have a full knee replacement and hernia surgery. I have been bouncing between 130-135 kg for the past 4 years can not walk far without pain or getting so tired I have to sleep to recover some energy. When I went into menopause I went from 153kg right down to 130kg in the space of 18 months, no diet, no exercise nothing just working out in the garden like I have been doing, but I am not even able to do that anymore. Now I have the top half of my body size 18 waist and size 20 bust(normal for me) but from my waist down it’s 22 butt area up to 24 hips I have never worn boots off the shelf I had to have motorbike boots hand made to fit me.(cost a fortune) I started puberty at age 9 I was already 5’10 and well endowed wearing adult bras, was nicked named the Jolly Green giant after the ad that came out around ‘72-3 in the UK. Now that I’m 60 I’m learning so many things that have impacted my life that they are only just figuring out in the past 10 years
@@marilynpreen7339It’s having a big bum that looks like the bustles Victorian women wore under their dresses. My bust is 36 waist is 30 but hips are 44. I have trouble getting boots to fit my calves & discomfort when my cats walk on my lap. If I knock my legs accidentally I know I’ll bruise. It hurts when my blood pressure is taken. I’ve recently started setting off the scanner at the airport! I’ve booked liposuction for my legs. I’m 65 & fed up with it all as I don’t over eat but recently the butt bustle has increased & I might need liposuction for that too. My granny was the same so I know I’ve inherited it all from her.
Thank you so much for being here and sharing your journey thru lipedema. Your heaven sent! So I showed my family doctor of my discovering lepedema, she had no idea what it was either. So I had already done my research on it. I called my insurance to see if I was covered and to find a Therapist in my network. So once I was in front of my doctor she said they had to find a therapist and the assistant would have to check for in network bla! blah! blah! I had it all in my had and I handed it to her. Within to weeks I was seeing my therapist. Going on 3 months now and the numbers are declining significantly. So all that you’re talking about makes a lot of sense to me. Thank you! And yes I would get padded down which was so embarrassing. Oh and btw I found the book on Audible for $4.86 thanks again Rebekah
i was diagnosed last week, it's very scary, so any info is helpful. everything you are saying about clothes, boots and such is absolutely spot on for me as well, i have had sensitive skin all of my life! very painful to the touch.
Hi @kathleenthomas1971! They do make it so scary, don't they? I really had some good cries at the beginning of my journey, but I hope Sturdy Woman can give you some light at the end of the tunnel. Sending big hugs and hoping you continue getting answers and feeling better day by day ❤❤
Rebeka, you are SPOT ON about TSA. I have been setting off the alarms for years and just thought that it was because of surgery in my left knee. WOW, A BIG THANK YOU!!!
I know, right?! They should be using those machine as diagnostic tools 😂🙄 Starting to get the fluid out of my arms and legs seems to have helped a lot. Knowledge is power! 💕
I just got diagnosed last week but have been suffering for 23 years. Your channel is a great source of information and help 😊 My signs were a lower body that was so much bigger than my top half, I'm talking a size 22 vs size 10/12 on top. I always had "bumpy" thighs and bum and couldn't lose weight at all there. I was always embarrassed that my legs didn't look "normal." As my condition progressed I experienced a lot of pain and couldn't even have my children sit on my lap. I am hopeful for the future that I can control this and reduce my swelling
Welcome to the sisterhood, Gemma! I'm glad you are starting to get answers. Knowledge is power and you can start feeling better. Just be patient and take it one step at a time :) I'm so glad to hear the channel is helpful. I try to include the things I wanted to know when I was just starting. Keep us posted on your progress!
I just got diagnosed also… The thing so far that has helped me the most was getting hooked up with a certified lymphedema massage therapist… She also has helped educate my primary care and get the equipment I need..
Gemma, this directory could be a starting place depending on where you are in the country: directory.klosetraining.com/ I struggled to find somewhere near me even though I live in a big city. Finally I found a regular physical therapist near me who mentioned lymphedema on her website. I've also talked to women who find massage therapists who list MLD on their websites and have good experiences with them. My insurance paid a portion of my bi-weekly sessions for about six months. Good luck
A symptom or sign you forgot to mention is the "BRACELET EFFECT" lipedema doesn't effect the hands or feet so your legs are drastically larger than your ankles. You may have Lipedema if your body is shaped like a Christmas tree or a triangle, my measurements for example, are 31-28-43 little waist with big hips and bottom. I was diagnosed with Lipedema and Lymphedema 5 years ago. You can also have both Lipedema and Lymphedema. Make sure when you buy compression garments they fit properly or it will make your symptoms worse. And always use coconut oil on your legs.
@sarahh.9717 great point about the "bracelet"! It is more pronounced on some people than on others and becomes more obvious as the disease progresses. Lipedema Foundation has some helpful pictures for anyone who wants to see examples: www.lipedema.org/staging
@@virginiabaker4471re: coconut oil - I’m not sure why they are recommending this? Maybe to help get the garments on? If so, I would use bodyglide or something similar made with dimethicone. Or a “no chafing gel.” I have seen various companies selling them now at the big box stores like monistat, etc.
So funny you mentioned TSA!!! Ever since they started using the machines I always got patted down…BUT since being on Keto for a year and my inflammation has reduced a lot, the machines have stopped going off (in the last two months)!!! When I finally learned about lipedema I thought that was the culprit…and now we know the rest of the story!!! 😊
Wow. This explains sooooo much... I don't have to buy any book to understand this is what I have. It's been bugging me since forever. It's got so bad that I can often just look at someone and tell they are not "fat" fat, but that its just something else going on.
I’m just learning about this disease and really think I might have it! I am right around the line of being considered “overweight”, but kind of read as thinner. However, I’ve always felt like my body/fat is more dense than I would expect for my size (I usually describe it as being like a pitbull, small but dense haha). I have found certain things to be quite tight around my ankles/ lower legs and arms, and I’ve always had thicker thighs and butt. I have a little bit of a wing under my arms as well and the tissue is lumpy. I recently started noticing that marbley texture in certain areas of my body and have been freaking out! I went to my doctor and she said it’s just what “normal connective tissue” feels like. I really don’t think it’s normal because my partners fat tissue doesn’t feel like that at all. I don’t consider myself very hyper flexible, but can put my hands completely on the floor without bending my knees and I’ve been stopped at TSA a couple of times. Now that I’ve discovered Lipedema through my own research, I’m going to return to my doctor with more confidence. Thank you!!!
Bravo to you for being persistent @leelahickman3820! Doctors know so little about the lymphatic system that we often have to help educate them. I have a book linked in the comments and also a brochure (free!) that I like to take with me to new doctors. Good luck! It certain sounds like you could have some of the symptoms. Have you seen this video from FDRS? I found it very helpful ua-cam.com/video/T7NvrgLLlXY/v-deo.html 💕
@Alale6000 you found your people! Knowledge is power and you can start feeling better. Check out my conservative treatment playlist for some ideas to get you started: ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html
I used to think all people had lumpy nodules as fat too since mine always felt that way, especially in my arms, legs, and rear. However, although they’re not large, my breasts have this type of fat in them too, which makes me nervous for not being able to tell the difference between a concern for cancer or just fatty tissue. I’m in my 30s so I’ve not reached the regular mammogram checks yet which usually start at 40. Since having my children I also now have some of the nodular lipedema fat in my stomach too. I’m down 28 pounds now with carnivore and I’m feeling better. I’m determined to fight this as much as possible naturally and avoid surgery. It’s good to know I’m not alone. Thanks for doing these videos!
Hi Whitni! I've heard other women talk about having it in their breasts too, so I don't think you're alone on that one. I'm also in my 30s so not sure what all our lumps and bumps will mean for mammogram checks. I guess that's the one upside of my small chest...?! Ha! So glad you are feeling good on carnivore. Feeling good has been the game changer for me far more than the weight loss. For the first time in my life I feel alive and have energy! Glad to hear you are still enjoying the channel
Dense breast tissue is one qualifying factor for insurance coverage of annual mammograms, rather than the normal 2-years. When to start is based on risk factors. Getting a good baseline and using the same facility each year can mean fewer callbacks. I had to have ultrasound after my hospital switched from 2D to 3D, but once they have a good map, they can tell your normal from anything new. Always make sure that you are comfortable asking questions during your routine women's exams. A good provider won't blow off your concerns.
At my last mammogram, I was told I was lucky to have fatty boobs as they are easier to see through unlike more muscular breast tissue. I do have beads on my thighs and have since I was 25. I also remember looking at my legs down by my ankles thinking,” I don’t have Kankles but why does my skin look so weird…as in lumpy? Now I know. thank you to all the sturdy women who have suffered as I have! Trying to not care about my lumpy lookin legs!
This is the best explanation I’ve heard! Thank you so much. I’m glad I finally have an explanation to strange issues I’ve been dealing with my body since puberty. I fit basically all of the signs you mentioned, but the blood pressure cuff is the dead giveaway for me. That is excruciatingly painful for me. And I’ve always had bat wings that I’ve never been able to get rid of no matter how much weight I’ve lost. I have a consultation with a plastic surgeon next month for an official diagnosis and so I can hopefully move forward with surgery. I’m very much looking forward to it ❤️
Thank you, thank you, THANK YOU! Watching your video is like hearing a bio of my body. I am blown away as I have always just thought I was fat. I am so incredibly defeated as my legs look so disformed. I only wear pants as a dress, skirts or short expose, way more than I am comfortable with. We put in a pool last summer as it was a dream for my husband and our daughter, but all it has been for me is a nightmare as I am constantly trying to figure out how to hide my legs and my "wings" that jiggle constantly. Your video has encouraged me to find a doctor who deals with lipedema, as NO doctor I have seen has ever brought this up. I look forward to learning more from you!
Yes, the airport alarm thing happens to me all the time. My thighs set off the machine. So happy to know what this could be and more importantly, that this can go away.
Big hugs. You'll get through with getting better. I realised that this is what up with me when I stared tracking my calories a few years ago for fun.... I naturally undereat apparently. I was closing out the day at about 500 calories short of the deficit they set for me. I hit me that this fat must be something else because I'm actually pretty active and I don't overeat... So what gives. Now I'm looking for what mineral I'm probably short on, or what toxic mom drama I need to release because those are like suspects.
Thanks for the video! I'm a Rebekah too! I now know why I kept setting off the machine when I was much heavier, lol. So glad I saw this, I have answers now.
Hi! Thank you so much for sharing your story! Today was a really bad day for me…. I’m overweight ( about 220 pounds) and even if I lose some weight is very easy to put it back in a snap! Plus I have big flappy ugly horrible arms with a “fold” in the upper part which I understand why it is here! Today I went to the plastic surgeon for a consultation to see if I finally could get them fixed with a lipo! He told me he couldn’t help me, not through the airsculpt procedure I was hoping for. He told me that probably that fold couldn’t be fixed at all! I don’t wear sleeveless shirt, I don’t even look at me in the mirror if I’m naked, I feel so bad all the time and I feel guilty about the way I look… you gave me the explanation nobody did and I feel exactly like you describe, even about the airport ! I cried a little bit in the car on my way home but I didn’t want to accept a “there’s nothing you can do”, so I started to dig online and after a couple of hours I found you! Please help me to solve this problem! Now I know that I always had it even when I was a thin and nice girl. Now I’m 60 and I’m tired to live with this myself. I really hope you can give me some confidence and hope to change my life! Thank you. PS Forgive my bad English! I’m an italian who has been living in the States for 7 years now but I really need to improve it!
Firstly your English is fantastic! Secondly your comment really saddened me. You sound so very very sad and you are exceptionally hard on yourself. I have been over weight in the past and struggled with bulimia throughout my life, I hated the way I looked and was so self conscious, depressed and embarrassed of my shape, I am a pear shape. So I really felt so sad hearing you be so hard on yourself. If I can give you advice, I put on a lot of weight after an accident, it was horrible, but after I did some healing and worked really hard on myself, I finally came to a place of acceptance. Since then, my weight has dropped significantly and although I will never be thin, I’m Ok with that now.I’m 54 soon and I am never going to have the body of a 18 year old and I will never be blessed with the perfect figure! That’s ok, I’m at peace with that now. I had to let it go and find peace and acceptance with myself. Once I let that negative self talk go, the weight came off and I was able to focus on the things about myself that I never had time to think about before as I was too busy hating myself. I took 49 years to learn to live myself and be content with who I am. I may not have a model figure, but I am a kind person, I’m great at my job as a nurse, I care about my family and I am a wonderful mother. Find things about yourself that are good about yourself, I bet you are a kind and empathetic woman with a lot of love in your heart, wouldn’t you rather be that than someone with a perfect figure and a terrible personality? Please be kinder to yourself, try to accept that you are who you are and focus on the positive things about yourself. I bet you are beautiful and you don’t even know it! We are both getting older, I pray that you can find peace in ourself and happiness with who you are. Start with a small walk each day, even 5 minutes! It will be good for your mental health x good luck lovely lady. ❤
37, just found out about this because for the first time I am actively going to the gym multiple time a week, walk kilometres every time, increasing my pace and the incline and the scales are not shifting and I want to cry. Everyone keeps saying to change this and that but I have done all the things, I have changed all the things.
Red lights going off all over! Big arms that won't fit into blouses or jackets, no boots that fit, lumpy, bumpy arms that look like Popeye. And painful arms and thighs. I have lumps all over my body, some on my arms arm so big, I always try to wear long sleeves. Of course those blouses are at least 3x larger than I need any where else. I'm 71 and was pretty normal size until I hit 30. I got married, my hormones went crazy and I gained 60 lbs in a very short time. I've been fighting to lose it ever since, to no avail. I'm going to take your info to my female doctor who i really trust. Wish me luck🤞🤞🤞
I have saddlebags that wont budge and abnormal cellulite that covers 3/4 of legs. Overwieght but not obese. And I don't have kankles. Just want to share as we who have lipidema can look different from each other.
Big hug, Cheryl! Do you have any swelling in your ankles? Getting into good compression reduced my ankles pretty quickly, but it will depend on what else you have going on
Me too, iv spent years YoYo dieting and I always end up regaining the weight again because I end up really skinny up top and there is barely a change in my saddlebags. So I still have to dress the same trying to hide my hip dips because my thighs are soo wide for the rest of my body. I bruise there like a peach.
Oh my gosh… yes the airline thing… they did that to me.. I couldn’t figure out why they pulled me over… 😲🙄 I thought🤔, they looked at my hands and face and they look normal and thought I padded myself , trying to hide something,.. .. it was such a awful feeling being singled out 😞 for being overweight. I have all the symptoms… I just found out about this a year ago..🙏🏻 it made so much sense… The doctors I’ve talked to about it have never heard of it and dismissed me trying to say it’s lipedema instead of just being overweight. “You just need to go on a diet… you must be lying about how much and what you eat”🙄😞 This last 4 months it seems to be getting worse.. I’m praying I can reverse some of this 🙏🏻🫤 So glad to have found this channel 😊
@@lhale9176 🤨 while I have empathy for this situation, I think what you should really advocate for is just a more general private screening. You cannot be above the law when it comes to airline safety....to be blunt, overweight people can be terrorists too.
I was diagnosed with Ehlers danlos syndrome and I definitely have lipedema. My doctor never even mentioned the word lipedema to me and it is quite evident I have it. I am unfortunately constantly taking hibuprofen for pain and some days I can’t walk. I am not morbidly obese but a little over weight. My lower body is so much bigger than my upper and I call myself the Queen of cellulite and varicose veins…I was ridiculed about it all my life. I am Happy to find this community! Thank you for sharing ❤
OMG‼️ All my life I’ve just thought because I let myself get so fat, that was the reason why my legs were so gross and my arms too. I hit everyone of the symptoms you mentioned except hyperextending. 😳🤷🏻♀️
Thank you Rebekah for your comprehensive video. I’m 65 & have just realised what’s been going on with my body all my life! I’ve been searching the internet for answers in the last 2 months & I’m finally going for liposuction. I’ve always been like 2 different people joined at the waist with a smaller top but massive bottom half. I’m soooo fed up trying to find boots to fit & clothes too. My granny was the same shape so I know I’ve inherited it from her. Like her, I have the cuffs at my ankles which got worse after menopause; apparently the condition can be triggered by puberty, pregnancy & menopause. Mine has increased since menopause. Thank you for your lovely, informative presentation about this condition. You’re a gem xxx
I cant believe that I am 37 and just now I am finding out about this!!! Everything you are saying is me!!! Ever since I can remember I have had bigger arms and legs! I have never worn a shirt, I have never bought a boots if not ankle boots and even those are a bit tight at the ankles!!! I always felt like it was not normal but everyonnnneeee including docotor tell me I just need to diet and exercise! No one understands
OMG! That is why I constantly get patted down at the airport!? It’s gotten to the point where I hate flying because of having to get felt up every time I go through security.
I've always had leg pain and would take Tylenol for pain. I have also had trouble fitting my calves into boots. Now I started keto a few yrs back and lost weight but my thighs never got any better. Here's the interesting thing, I had a thigh lift with lipo last yr and of course my legs looked a bit better last yr. Now, they are getting back to how they used to look! I am now trying this cavitation device and am trying to push on weights to see if that helps as MEDICARE doesn't pay for lympedema desease, so I have to find my research on how to care for this. My arms are also affected by this. I started blaming keto because of the amount of fat intake. Im still apprehensive about that, but, Im not sure, as I love Keto. Ty for this video and I will continue to tune in. ❤
Keto helps you burn fat, since your metabolism becomes tuned to using it for fuel, instead of carbs. Maybe reduce your nut &/or dairy intake percentages?
OMG! This is me! You just described me! I have never been able to wear boots. No matter how thin I am, my calves, thighs and arms are always bigger than the rest of me. I have never wore sleeveless clothes because of embarrassment of my arms. I bruise with touch. I even had a doctor send me for a blood timing test once after a OBGYN appointment because my legs were so bruised. I am stopped at the airport after every scan. So frustrating. I’m 61 years old and no doctor has EVER mentioned this! I would rather have a pap smear than have my BP checked! So painful to have those cuff tightened.
I was diagnosed with lymphedemea/limpedema several years ago. I had 'sturdy' legs since mid teens and was never able to get boots that fit my calves. And I was a normal weight otherwise. Through my 20's I was very physically active with biking, running and yoga. My legs always stayed heavy. After having children in my 30's my weight started creeping up and in my 60's lymphedema was diagnosed and I had large fat deposits around my ankles that never go away despite massage treatments and wrapping. I now wear prescription compression stockings every day. And yes, I set off the TSA machines every single time. I thought it was the stockings.
I'm so glad you finally found your way to some answers, @alsotroemerica1031! It's unacceptable how long it takes most of us to figure out what's going on with our bodiesI really hope knowledge keeps spreading and things get easier for those coming after us. 💗
I am 65 and retired Women ‘s Health RN land never knew about this disorder until recently. I have, I believe seen it in others and am pretty certain have it myself to maybe a milder degree than some. The nodules in my arms, thighs and legs. I. Also bruise very easily in my legs and have continual swelling in my legs which never resolves but never extends to my feet or ankles. Which I have always thought was strange! Now I’m thinking my daughter may have it as she has the hyper mobility and sets off the detectors at the airports! Thanks for posting this.
Hi, great that keto has reversed a lot of your lipedema symptoms. Hardly anyone hs commented on that. I've heard/read that carnivore and ketovore diets do that too. Both of those also being low carb. Definitely something to try out as it wont cost you, wont hurt you, and has a lot of other health benefits too. Thanks for sharing the info😉
@judithowens8212 thank you! I agree that keto doesn't always get as much attention as it should with lipedema. Even at the Fat Disorders Research Society (FDRS) conference in 2023 very few people were talking about it, even though I am certainly not the only person it has helped. I've never felt better in my life!
Thank you Rebekah, I really enjoyed watching this latest upload.. Your smile and laughter is beautiful, you have such a beautiful aura 😘💋. I was only told in February that I have lipedema but always had swelling.. I was constantly going to my Dr's and they kept saying lose weight etc. I walk 14miles a week and am active and am size 14 but still the legs would swell during the day. Looking back blood pressure monitor were painful and definitely felt sharp pain picking up my mums cat lol and I did end up buying wide calf boots in the winter as my legs would be uncomfortable during the afternoon. I have recently noticed the bat wings.. I would build muscle on top but still the skin was loose.. I just want to send love and hugs to all ladies that have this disease and you are such inspiration to me as Rebekah on the Internet all videos are about liposuction etc and that is not what I want to see as its upsetting but you have shown us that this condition does not have to progress if we maje lifestyle changes and be consist with foods and exercise and drink plenty of 💦 water and invest in compression and red light therapy and take vitamins and do drainage and dry brushing.. Thank you 😘 🤗 ❤️
Hi Kam! Your kind words make me blush every week - thank you. I am so glad you continue to find the channel helpful and that you sound like you're falling into a great self-care routine. I hope each day keeps getting just a little better. Giant hugs!!
I am sure I have it. Until my 20's no sign of it but when I got a sit down job in a bank, my legs started to get heavy. A low fat diet in my 20's got my legs down. However, never since have I got them down. I believe swimming can help
This is so useful! So much of what you’ve mentioned resonates. Even after getting weight loss surgery and loosing almost 100 pounds (it was always SO HARD TO lose weight naturally) I still have lumps on my legs, buttocks, my arms look exactly like yours with the beady texture and I still sruggle finding boots!
Love seeing all these reactions. I knew I wasnt alone but it feels to good to "see you" I could wear some boots. My upper legs are a lot worse than my calves. I used to think I had extreme cellulite which started at 14, skinny but ugly legs already. I feel horrible wearing skirts, dresses and swimwear. Not only because of the bumpy legs but the bruising too. Went to Vietnam, and because of the pedals of pushbike rides it looked as if I had been in a terrible accident. I am 59 this year so maybe I should start to accept it finally but I can still cry about it. Do other people have many little veins too. I have them treated sometimes but if I bruise a lot it still hasn't improved the look much. My mother had the same legs as mine and I remember thinking that my mom had the ugliest legs of all the moms I knew. Luckily I never said it to her. I think my daughter is prone to get it too. Btw the machine in the airport went of. If you looked at the picture it looked as if I had strapped a pack on my belly. Never realised why it went of.
I'm late to this video, but I'm so glad I found it! Learning a lot about this and realizing that I also have this condition. Great information for someone discovering the issue. Thank you for sharing, there's not a lot out here but through your platform and a couple others, I'm learning a lot and this has really been eye opening. Ty!
I was going to ask therapist for a knee replacement and she mentioned I might have it. Wow what a relief to find out I wasn’t just fat. Never had boots never had jeans.
I have H-EDS, Chronic Pain from this, Had Lymphoma / Stage IV Burkitt's Lymphoma and may years later developed Lymphedema, constant injuries, scoliosis... I'll check out your website. I just began listening to Chuck Ehrlich, MS talks at the Lymphatic Network Organization's Patient Symposium about how to starve out lymphedema
I had breast reduction surgery in January 2024. In my post surgical notes, the surgeon noted, "Stage one lipedema legs." I never heard of it. Did some research, and yup! The issues with my legs (swelling and weird fat deposits) and too big for my body arms. I just thought I was built badly, and it was exacerbated by my Lupus disease. Nope, lipedema. My rheumatologist and primary care doctors told me there's nothing to do about it except to lose weight and exercise. They were wrong. Lymphatic massage, dry brushing, low carb eating, and castor oil massages are starting to make an improvement. Keep healing ladies!
Great info! I cant believe at 62 after years of body shame, I am just learning I have lipedema.
@Emblem3Fans welcome to the club! You found your people! The good news is that now you know there is a lot you can start doing that can improve your symptoms. My conservative treatment playlist provides some inspiration ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html
I’m 68 and have spent my entire life hating my atrocious legs and upper arms I now firmly believe I have lipedema. The mention of the pain when pressure is applied ie a cat or puppy walking across my lap has me utterly convinced.
I'm ready to cry. I had no idea. What a complete list, Calves, boots, even at 16 and 125 lbs and 5'8", flexibility (I can palm the floor at 52 with no streatching, , people my knees hyperextending my knees, TSA, hips and arms, I also had swelling once after a long flight, but it lasted for days, huge quads, a nodual on my arm, dogs walking on me., bruising, blood pressure cuff issues, .. doctors never said anything .. :( I'm so sad I lived so long not knowing and feeling. I've lost 45 lbs and I'm currently fighting to keep Mounjaro. Now that i know this I know that I'm 100% the body type. It is so noticeable. I can't believe that Doctors really ignore people who have weight issues. I'm literally crying right now. There were signs 30 years 150 lbs ago. Years of paid, struggle, guilt. I really can't believe that not a single doctor knew.
We know exactly how you feel @Robin94123! Lipedema so common you see it everywhere once you know the signs, yet doctors just don't know and, if they do know, they don't think there's any hope. Have you found my conservative treatments playlist? ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html There are a lot of things we can do at home to start feeling better. Let yourself have as many good cries as you need to first, though. I certainly had grief over "what could have been my life" at the beginning of my journey. The good news is you found your Sturdy sisters ❤❤
I agree. Totally me too. Everything resonated. Even the flexibility which had caused knee issues.
I know how you feel 😭 I’ve never worn shorts due to the insecurity..hate it!
At 67 years old and just now finding out about this...I know how you feel. All the years of beating myself up for being "thicker" than everybody else, all of the sparky remarks about my weight and my big arms etc., all of the sadness at what could have been especially now since I'm older and feel like I'm climbing an uphill battle to try to fight for myself while feeling awful every day.
Me too! I just discovered it, for me. I’ve heard of it from others. Never considered myself. I’m in tears.
Boots. Yup. Wings. Yup. Blood pressure cuff. Yup.
At 80, it's most likely too late for me to pursue the remedies. But will begin investigating.
So psychologically freeing to finally understand...
after decades of fat-shaming...from doctors and elsewhere.
Thank you!
Even if you wear compression stockings, this may relieve your pain and manage it - particularly made to measure stockings (but they are expensive)
@@JanetMacCallum Thank you for your thoughtful reply. God bless.
@@raedarden9830oi 3:11
There are people in their 80s that start a keto or carnivore diet who lose large amounts of weight and who reverse diabetes and autoimmune disorders. It may be worth a try even if you simply lose some weight and are less sensitive to pain.
@raedarden9830 it makes a huge difference doesn't it? Just knowing that you aren't crazy and there IS something wrong with you. Sending you big hugs. As others have said, there are still things you can do that will improve the quality of your life quite quickly. Have you found the videos in my Conservative Treatments playlist? ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html 💕
My mind has been officially blown. This is me. This is me! I'm not crying you are...
@kellyanng2215 you found your people! Thank you for being here. Knowledge is power
same. i am blown away, overwhelmed and almost in tears.
My Lipidema started about 20 years ago. I was married to a terrible narcissist and the trauma caused it. I wondered why I had the nodules on my arm "wings" and thighs, and why they were so much bigger. And, the pain was so severe! I'm working on it now by going on bio-identical hormones and eating carnivore.
why carnivore?
Carnivore with lots of bonebroth ( I make a lots of in my biggest size of Instant Pot)❤️
Bio identical hormones? Which hormones and what for?
@@joanneclark8256 Mostly because clean meat (grass-fed, grass-finished, organically-raised chicken, etc) has no hormone disruptors in it and is the healthiest way to eat.
@@evab2274 I've just started using bio-identical estriol and progesterone from Platt Wellness.
I'm trying hard not to cry through this whole video. Thank you.
@vespersongs belated welcome to the club! I hope learning the word "lipedema" has helped you start finding answers and start feeling better ♥♥
It's not for everyone, it's expensive and has risks however, the thing that has worked for me (my "thunder thighs with extra saddle bags") was liposuction. I know this is a controversial idea but I decided to try it. It took 3 proceedures and has helped me enormously physically and emotionally. Again this is only my personal annecdotal sharing and is not for everyone but maybe can help some. Love to everyone here, the challenges are real and difficult but you are an entire person, not how society perceives you to be. Be well.
How much did you pay?
I'd consider lipo. Were they even able to get down to the "cankles"?
There's also nonsurgical lipo - cavitation. It might be helpful for some folks and it's also cheaper
@@gloriagi9499 I hadn't heard of cavitation, so I looked it up. In the description, it says it can leave an uneaven, dimpled effect due to the fibers that hold the fat in place. In addition, it says that cavitation isn't very effective for cellulite. I'm wondering if anyone can report with personal experience using this method for lipedema.
OMG this is what I have !!!!! I almost scream with pain when getting b/p checked!!! I have all the symptoms.
me too i nearly hit the roof and i got lyphadema in both legs
7:18
Yep and bruising afterwards 😮
I don't have lipedema. But I like to be educated. I love learning more and more about the people on this planet. It makes me so much more connected to everyone. We are all one. I have had my own mountains to climb too. So I totally understand feeling despondent when facing something that seems insurmountable. I wish everyone light and love on your journey. One day we will get to a place where human beings don't categorize and judge others, or give special privileges to 'the ideal person'. One day we will all be equal, so that when a condition like this arises, we can pay attention and help our brothers and sisters in need with the goal of ensuring sound mental health for all. xo
You have understood what it takes to be liberated
I wanted to make a second comment. Most people (it affects not just women) have it at quite a young age.
When I was 24yrs old I quit smoking and it changed my hormones enough to trigger my lipedema that was laying dormant in my body.
Before that I had a really nice figure with no pain or issues.
It wasnt quiting smoking. It was just your hormones changing as you age.
Wow this sounds like me
I’ve discovered my lipedema does not like squeezing or heat. Before I was diagnosed with lipedema, I was diagnosed with it’s buddy lymphedema. And was signed up for lymphatic therapy. And we did the tight wrapping on my legs. Which after an hour would become very painful. Heat along with a really horrible burning sensation would take over my legs. And although my therapist urged me to keep the wrappings on anywhere from 1 to 3 days, I only made it one day a few times because I couldn’t take the pain. And stranger still, my leg measurements “to see how much liquid we squeezed out” barely went down. That was when my therapist remembered another therapist who visited the hospital and talked about “lipedema - the painful fat disease”. And after some research, she told my doctor about her findings. And I was diagnosed with lipedema officially. All that aside. For most of my life, I’ve always had a lot of discomfort when the sun came through the window and rested on my legs during car rides. It felt like my flesh was sizzling and I couldn’t sit still until I found something to cover my lap. My family always teased me about it no matter how much I insisted it really hurt. Now I know why. And why getting too hot makes my legs and back hurt. I hope someday I can get treatment for the lipedema. Keto does not agree with me. 🤷🏼♀️
Eat less
@@2okaycola Lipedema is resistant to dieting. Although some have success with Keto, which as I said in my comment, doesn’t work for me. If you’re going to troll, please know about the subject.
@@2okaycolaeducate yourself more! Keep BS statements to yourself! Remember the golden rule about saying “nice things or nothing at all”!
@@2okaycola...crawl back under your rock & shut up.
The subject of lipodema is similar to domestic violence in that it has been unmentionable. Generally men don’t get it so if it doesn’t affect them it’s not worth talking about. The whole issue of women’s bodies have been undervalued or not deemed necessary to explore due to gender bias. Well done, Rebekah
Sigh. Here we go again with the misandry crap. It's getting really tiresome. Maybe you should do a bit of research into how many medical advances have been invented and developed by men in the last 300 years as compared to women. Get that chip off your shoulder and stop blaming men for your problems.
@@wingnut71
I think you missed her point. No doubt that men have made beyond count advances in science and technology and every other area in human existence. That was not in question. Pretty much every science, medical or institutional study has been done on MEN!! Yes! There heart, liver, brain, energy, hormones etc etc etc. There have been more studies done on women but this is in the infancy compared with men studies. Some women studies were conducted off of the men’s studies. Look them up. We need to catch up.
@@wingnut71women were bullied in STEM fields into the 1980's.
@@wingnut71 I agree the initial comment is dramatic, domestic violence isn't really comparable to gender bias within medical practice although they are both very real issues.
However your argument is a double edged one, men also suffer from gender bias when they have a typically female associated disease, furthermore OP's comment that diseases effecting women are typically under-researched is correct, while making no comments that suggest they are upset that men have developed medical advances, rather the opposite that more medical advances are greatly desired! No doubt the gender of these pioneers is less important than the research they contribute to society.
I have Lipedema, I have been through physical violence 50 years ago from a (many years ago divirced) x-husband . They are not the same thing! I am so sick of brain washed women whining that it's all men's fault, NO IT ISN'T! We as women make BAD choices...wanting the bad guy because they are exciting!
We as women & men as well need to RESPECT OURSELVES!
Realize, God loves you He made you to love Him and find respect for yourself, because you are LOVED by GOD!!
I've had a doctor in a weird mood (very rude & brash) do all of the hypermobility tests -- I knew what they were -- and I DEFINITELY am not hypermobile which other doctors have confirmed -- and he just kept saying I am. I'm literally not. Some doctors are great, other are capricious psychos for no reason and it's scary.
Yes. Agree.
YES! On especially the boots. I have the other symptoms too but it was a kid of fun affirmation when you mentioned the boot thing. I’m 66 and still remember trying to find boots when I was in high school. I appreciate you and this group of women that are helping us find our way through this.
Hi Kait! I am happy to report that about a year ago I bought my first pair of knee boots. Torrid has nice extended calf ones with some elastic that makes them forgiving. I honestly cried. When I lost weight previously through the cut-calories-and-exercise routine it hadn't changed the size of my legs... but keto did. Now I want to go put on my boots and prance around my living room *right now* :D
I found a pair of ankle boots size 9 the previous winter, this winter I couldn't zip them up, with no weigh gain. Greetings from South Africa
My late father was part of the engineering development team of TSA SCREENING and Whitehouse Security equipment.
You're correct, the machines have fluid sensitivity sensors. It's usually a percentage.
I raised the issue of my hip reconstruction setting off old-style TSA and not with New.
But then the development of my Lipedema it started again. My Dad explained the engineering and software ranges.
That’s very interesting. I wonder if that’s why every dehydrated person whom I know (like my Mom, who is extremely dehydrated!) more often than not gets a beep. I wonder, is it a visual map or is it a percentage of fluid by weight?
I am wondering if there is also an outline component....? Since there are such abrupt changes at the ankles, wrists, and knees? Looks like you packed something tight and wrapped it up, even though it's just your own fat.
Amazing.
What can you do about it?
It feels so good to find out what is going on in your body when you're not sure what is happening. I expect lymphatic massage would help with this issue, as it helps the body remove excess fluids from body tissues. The lymphatic system distributes lipids/fats, so it makes sense to get hard fat deposits/lipomas in areas where the lymph system is congested. I'm a massage therapist and lymphatic massage is a favourite in my practice, it's very gentle and relaxing. And the best thing is you can do it yourself. I would recommend learning this easy technique to add it to a self care routine. Also , emotionally, the lymph fluid stores unprocessed emotions. Don't know if that helps, but I thought I'd mention it. When you clear out the lymphatic system you feel great. It's a fluid system so hydration is very important so lymph fluid doesn't stagnate. Good luck to all the ladies here.
Commenting 3 months after you posted this, wondering how your clients perceive the pain of lymphatic massage? I can hardly tolerate touch on my legs and bruise easily all over but especially on legs - long lasting, painful bruising. I'd love to try lymphatic massage but wonder if I'd a) tap out from pain b) end up looking like a plum c) both
Wow…I suffered from abuse and neglect as a child. I have a ton of unprocessed emotions. Wonder if that has something to do with it
Omg, I checked the first few boxes you listed off, but when you got to pain with small animals walking across your lap... I never suspected I had lipedema because I have just always been overweight, and fairly proportional. But now I think I do have it. As I have gotten older, the hypermobility has become more problematic. Thank you for bringing awareness to this!
@meslaura you found your people! Welcome to the sisterhood
I just started hearing more about this diagnosis. I definitely have this!!!! Wow. Also, worked at TSA. The body scan does NOT detect water weight or water in our bodies. The technology is created to scan a “Normal” size outline of a male or Female body. There’s a button officers select depending on gender. If the officer (by mistake) selects female for a male, the person would alarm between the legs, because the system expects to detect a bulge in the crotch area. Any abnormalities outside of that outline will alarm. Most overweight people alarm in the stomach, legs and back area if there are creases, folds or bulk skin. (Please don’t take this as insult to overweight people). I’m overweigh and when I fly out I alarm in the legs area.
These symptoms definitely don't sound like me, but before seeing your video in my suggestions I didn't know what lipedema even is, so it was good for me to learn something new today! 😊
BP cuffs and the tourniquet used for blood draws absolutely kills me.
Same
Do they work though? My legs are too much. I don't care
Lipedema has to do with estrogen stored in fat. The liver can not break down and eliminate estrogen without the mineral selenium. I suggest supplementing selenium and staying away from soy products, grapefruit and seed oils. Increase your saturated fats
Edit
Someone in comments pointed out that you need to take the correct dosage of selenium and I know it is true for zinc that taking too much will cause cells to close down and not accept zinc (probably has to do with cofactors we haven't identified that are deficient)
With zinc you need to take around 50mg daily.
The standard dose in literature for selenium used to reduce your risk of breast cancer is 200mcg. Please do not take mega doses hoping your body will heal quicker. It will take time for your body to break down estrogen as it accesses fat storage.
There is not an overnight cure.
God bless
"What blocks absorption of selenium?
Smoke cigarettes. Drink alcohol. Take birth control pills. Have a condition that prevents your body from absorbing enough selenium, such as Crohn disease or ulcerative colitis."
Thank you!!
Very good advice, Carrikartes ! Maybe taking some iodine might help too, as the thyroid need it for your hormones to balance. Dr Eric Berg and Dr Mindy Pelz both have some good ressources on their channels to help with eating right and balancing the hormones. Maybe you should also try to avoid pollution in your home, all the products that wreck the hormones are everywhere. (mostly plastics, ban them from your kitchen at least)
This is really interesting. Where did you get this information? Google isn't helping me! I have Gilbert's Syndrome which means my liver doesn't break down estrogen properly and I'd love to find out more
@@Melstarry my husband had interstitial edema and I was researching about that. It took 3-4 days to find out about that.
I have found and along the way I found out about lipedema. I usually start with the problem listed first and deficiency listed next (edema is related to what vitamin deficiency?)
Gilbert syndrome is related to what vitamin or mineral deficiency?
"Vitamin levels
Studies conducted so far suggest that subjects with GS may have lower levels of vitamin D and folic acid than control subjects, having these levels inversely correlated with bilirubin levels."
In that case I would start by getting methylfolate (you probably have the MTHFR genetic variation also that slows down methylation and taking the unmethylated form might actually make things worse).
Recently I have been researching a little on using pure lanolin topically instead of oral supplements but I need to research that more, for now it is a theory.
Calciferol is the activated form of Vitamin D and I am wanting to get that for my husband or maybe some transdermal patches.
I believe I heard a doctor on UA-cam mention that the liver uses selenium to break down estrogen in the liver
@@Melstarry I heard a doctor mention it in a talk/lecture.
I was researching my husband's interstitial edema (took me about 4 days to find a solution) and along the way researched lipedema.
The doctor mentioned a deficiency in selenium in relation to lipedema and I knew about the storage of excess estrogen in fat for a long time already so I researched more on it.
I usually start with the problem and look for deficiencies related to the problem.
This has greatly reduced my research time.
For you I found this
"Vitamin levels
Studies conducted so far suggest that subjects with GS may have lower levels of vitamin D and folic acid than control subjects, having these levels inversely correlated with bilirubin levels."
So supplementing with methylfolate would probably be best. You probably have the MTHFR genetic variation which impairs methylation (@60% of the population has it).
All non organic grains are fortified with folic acid by law which can further slow down methylation in people with MTHFR.
So only organic grains or better yet cut out all grains.
I would also buy calcifediol the active form of vitamin D. It can readily be used by the body.
You probably also have trouble converting vitamin D to it's active form.
Always good advice to go as low carb as possible when dealing with any health issues and avoiding all seed oils.
God bless
Thank you for linking the lipedema with Ehlers Danlos. I never knew the two were connected. Thank you!!
I work at the airport!!! 😳😳😳😳😳😳,, I just literally fell out in the floor when you said this about the airport! And oh my gosh!!!! It's become a running joke how much I set off the full body scanner!!! I have already had a total knee replacement (the week of my 49th birthday) , so I have to go the full scan every day at work and my thighs and upper arms set it off All the freaking time!!! I know I'm using a ton of !!!!'s but I can't help it right now, you just blew my mind in so many ways,, BEFORE,, you even said this part!!!!!!!!!
9:24
Don't know if you're going to see this, but so very helpful! I've been setting off the TSA machines for a while now. All I can say is thank you!
A late (self) diagnosis is better than nothing! My doctor confirmed it.
Health history: Auto collision brain injury in 1999, but no diagnosis until 2012.
Diagnosis of Fibromyalgia in 2001; hypermobile EDS in 2011, but last few months I stumbled across lipedema.
Learning that lymphatic drainage treatments are very helpful!!!
As long as you’re doing your lymph drainage monthly, you won’t have actual lipodema problems or issues later on.
@@dudemorris7769 uhhhh, I am already in BIG trouble. Hoping to turn the tide.
@@dudemorris7769how do you do it?
This just blew my mind. I clearly need to do some homework and make a doctor’s appointment. I can’t believe this…to think I learned this from a random UA-cam suggestion 🤷♀️
I always approach those conversations like “I found this on the internet, my symptoms line up. I’m not diagnosing myself but these symptoms are a concern for me and I’d like to discuss this possibility”
I figured out a rare disorder by watching a TV show....my surgeon said it was the 3rd time he heard that in a month😢
Ditto!!
All signs and symptoms you are describing are about ME! I'm new to it and I'm 58 I just opened this whole lipedema planet for myself, and I'm thrilled that it is not just me doing something wrong or eating, not healthy, or being lazy towards exercising, etc.
Thank you, thank you for being so open about yourself. I signed up for your channel, and I'll be watching your videos now backwards 🎉😂❤
P.S.
My mom had it and never knew about it. I wish I could tell her that now. She lived with pain her entire life. RIP mommy...I miss you.
P.P.S. my bruises, pain during BP measuring, my small pooch walking over me or on me, pains during ultrasounds from touching me with pressure. People grabbing me by hand above my elbow can here me scream a mile away...I will yelp from sharp pain. Some people think I'm a drama queen...
my thumbs are very bendy, so is my legs( I can lift my leg up to my counters even when I was very pregnant and I'm not a gymnast). 14:28
*long comment alert*
Wow! You explained it better than any website or seminar I have watched. I’ve had a bigger lower body for as long as I can remember. And bigger arms. But I just recently discovered what is called lipedema and I have almost all of the symptoms. Especially the part about the blood pressure cuff (it hurts sooo bad and always raises my blood pressure!) And an animal on your lap. My dogs are under 30lbs but when they jump up on me when I’m sitting on the couch I am like ow ow ow please don’t stand on me … because it is so painful. I have been trying to get to the bottom of why my weight won’t go anywhere fast (unless I take extreme measures) and I finally think it’s time for me to find a new general Doc that can help me. I have a hard time getting through to my current doc. There are so many more things I am looking back on now that all of a sudden make some kind of sense. Thanks so much for this, I am so glad I came across this channel! ❤ subscribed!!!
Hi Melissa! Thank you so much for your kind words and welcome to the sisterhood 😆 It's so wonderful to finally know what's going on and even better when you start to find other people who can relate. Good luck with your doc. If he or she isn't helpful... next! Keep looking until you find someone kind and supportive. You deserve that. Welcome to the channel and keep us posted as your journey progresses
The nurse in the hospital couldn't understand why I was fighting not to cry from the pain of the blood pressure cuff. Next day, my arm was purple all the way around. I never knew this wasn't normal. All of these symptoms is me exactly, apart from the airport one. I've never been abroad so never been through TSA. It's lifechanging knowing what is wrong with me thanks to this video. Thank you.
So sorry that it even bruised with you. It does feel really uncomfortable for me too, the 4 seconds before it deflates are very unpleasant
Recently self diagnosed at age 51, followed by educating my PCP she did additional research and concurred. Airport security always means extra attention. Wouldn’t it be great if their technology could be used as a diagnostic tool.
Yes
Airport security gets touchy
Because of my inner thighs😮
I haven't had a pair of boots that fit my calves since I was 9 years old...😢. This explains a lot
Me too
Me too
Me too
I am so glad you shared this. 100% on all of the signs. I feel so much better when eating well, 16:8 fasting and self lymphatic massage. Thank you for sharing!
After being told that diets don't work with lipodema, I have succeeded in losing close to 30 pounds through 16:9 fasting, riding my bike, and eating a plant-based diet. I am 5 ft 6 inches and weigh 115. I know other people have been successful with Keto. Don't give up hope!
I want to add that in spite of all that, I have had cellulitis lately, so although my weight and size is "normal", I still have lipodema!
@@patriciagreathouse9840This could make one feel hopeless, if after all this, you still have lipodema. Maybe there's still too many carbs in your plant-based diet?
@@patriciagreathouse9840 Perhaps your plant-based diet contains too many carbs and maybe try keto instead for the lipedema?
LOL the boot story. there are many of us with this problem. You, my dear, have become my best Bestie! thank you so much.
Right?! I know that September/October fall feeling when everyone suddenly comes out in cute knee-high riding boots and all you can do is dig around for some wide booties 😆👢❤❤
Hi Rebekah, I just found your channel and I absolutely love it! I'm a "Sturdy Woman" too, I'm 65, and highly suspect I have Lipedema. I have an appointment with my Primary Care Doc next Tuesday, and I'm going to ask her about it. Thank You for starting this channel, what an absolute Angel you are. God bless you✝️🙏.
Did you find out from your Dr. If you do have Lipedema? I’m 66 and going to ask my Dr next Monday about it. ☃️
I am 67 and have had painful lumps under my skin for a very long time. I can't have children sit on my lap or allow my cats to walk across my thighs. They always hit the sore spots. I have RA and fibromyalgia, so I always thought the lumps were because of fibro. When I have my bp taken, I have to clench my teeth to keep from crying out because of the pain the cuff causes. I am supposed to wear prescribed thigh high compression socks, but I had to stop because the pain was so severe. I never thought of it being anything with a name, just one more thing I had to endure. So glad this came up on my feed. Maybe I can do something to get rid of some of the pain in my life. Thank you so much for this video.
Ck out Dercum’s Disease
Thank you.
Lipedema was mentioned 3 times in my cardiologist's notes today. Well, if that is correct, it explains my bat wings, the big fat butt bustle, and my legs hurt when touched...
I was getting upset with the first diagnosis on the list 'Grossly Morbid Obesity due to overeating". I can gain weight and not eat anything or drink anything but water.
Omg! Sounds like you're talking about me.
I had a doctor years ago (1963) tell me to quit dieting when I weighed 140 lbs. He said if I kept losing I would be emaciated on the top, but still be heavy on the bottom. I didn't really realize that I had Lipedema until last year (and I'm 86) what it was. The boots are another factor. I never could find any that fit over my calves. I have blamed myself all my life for not having "what it took" to lose enough weight to get rid of the heavier legs. At last I have learned that it has never been my fault.
Yep, had one Dr recommend gut banding, I eat once a day if that, sometimes I can go without food for a week and only drinking water or coffee, never losing weight. So I told the Dr no deal, why would I gut band myself when I virtually starving myself and still don’t lose weight.😳
I am just learning about my hyper-mobility and the connecting issues that comes with it, wish I had known about this 30-40 years ago but it was not a thing then. All us grandchildren had hyper-mobility they knew something was not right when I broke my right leg in ‘76 once I got back to school after a year off I was band from all land based sports which only left swimming. I’m for ever tearing my the tendons in both ankles just reaching up to get something of the top shelf, Dad got a foot step to stop this now😹😹 this has to do EDS something to do with collagen lacking in my joints and tendons without the collagen they can not stretch.
I have started ozempic injections and funny enough I have already lost 2kg this is a last ditch try to get the weight of me so I can have a full knee replacement and hernia surgery. I have been bouncing between 130-135 kg for the past 4 years can not walk far without pain or getting so tired I have to sleep to recover some energy.
When I went into menopause I went from 153kg right down to 130kg in the space of 18 months, no diet, no exercise nothing just working out in the garden like I have been doing, but I am not even able to do that anymore.
Now I have the top half of my body size 18 waist and size 20 bust(normal for me) but from my waist down it’s 22 butt area up to 24 hips I have never worn boots off the shelf I had to have motorbike boots hand made to fit me.(cost a fortune)
I started puberty at age 9 I was already 5’10 and well endowed wearing adult bras, was nicked named the Jolly Green giant after the ad that came out around ‘72-3 in the UK.
Now that I’m 60 I’m learning so many things that have impacted my life that they are only just figuring out in the past 10 years
The big fat butt bustle - please explain what that is
@@marilynpreen7339It’s having a big bum that looks like the bustles Victorian women wore under their dresses. My bust is 36 waist is 30 but hips are 44. I have trouble getting boots to fit my calves & discomfort when my cats walk on my lap. If I knock my legs accidentally I know I’ll bruise. It hurts when my blood pressure is taken. I’ve recently started setting off the scanner at the airport! I’ve booked liposuction for my legs. I’m 65 & fed up with it all as I don’t over eat but recently the butt bustle has increased & I might need liposuction for that too. My granny was the same so I know I’ve inherited it all from her.
Thank you so much for being here and sharing your journey thru lipedema. Your heaven sent! So I showed my family doctor of my discovering lepedema, she had no idea what it was either. So I had already done my research on it. I called my insurance to see if I was covered and to find a Therapist in my network. So once I was in front of my doctor she said they had to find a therapist and the assistant would have to check for in network bla! blah! blah!
I had it all in my had and I handed it to her. Within to weeks I was seeing my therapist. Going on 3 months now and the numbers are declining significantly. So all that you’re talking about makes a lot of sense to me. Thank you! And yes I would get padded down which was so embarrassing. Oh and btw I found the book on Audible for $4.86 thanks again Rebekah
i was diagnosed last week, it's very scary, so any info is helpful. everything you are saying about clothes, boots and such is absolutely spot on for me as well, i have had sensitive skin all of my life! very painful to the touch.
Hi @kathleenthomas1971! They do make it so scary, don't they? I really had some good cries at the beginning of my journey, but I hope Sturdy Woman can give you some light at the end of the tunnel. Sending big hugs and hoping you continue getting answers and feeling better day by day ❤❤
I have asked the doctors many times about the nodes and they just told me to lose weight. Now I know and I now have them on my legs, arms and abdomen.
Rebeka, you are SPOT ON about TSA. I have been setting off the alarms for years and just thought that it was because of surgery in my left knee. WOW, A BIG THANK YOU!!!
I know, right?! They should be using those machine as diagnostic tools 😂🙄 Starting to get the fluid out of my arms and legs seems to have helped a lot. Knowledge is power! 💕
@@sturdywoman Absolutely!
How does it set the machines off? 😮
I just got diagnosed last week but have been suffering for 23 years. Your channel is a great source of information and help 😊 My signs were a lower body that was so much bigger than my top half, I'm talking a size 22 vs size 10/12 on top. I always had "bumpy" thighs and bum and couldn't lose weight at all there. I was always embarrassed that my legs didn't look "normal." As my condition progressed I experienced a lot of pain and couldn't even have my children sit on my lap. I am hopeful for the future that I can control this and reduce my swelling
Welcome to the sisterhood, Gemma! I'm glad you are starting to get answers. Knowledge is power and you can start feeling better. Just be patient and take it one step at a time :) I'm so glad to hear the channel is helpful. I try to include the things I wanted to know when I was just starting. Keep us posted on your progress!
I just got diagnosed also… The thing so far that has helped me the most was getting hooked up with a certified lymphedema massage therapist… She also has helped educate my primary care and get the equipment I need..
@@sturdywoman thank you ❤😊
@@carolecoffman4276 I should look into a therapist. Thank you 😊
Gemma, this directory could be a starting place depending on where you are in the country: directory.klosetraining.com/ I struggled to find somewhere near me even though I live in a big city. Finally I found a regular physical therapist near me who mentioned lymphedema on her website. I've also talked to women who find massage therapists who list MLD on their websites and have good experiences with them. My insurance paid a portion of my bi-weekly sessions for about six months. Good luck
I don't have Lipedema, but this was very interesting. Your presentation was very thorough. Thank you for sharing this.
@MarlenevT thanks for watching!
I always set the machine off at the airport! I never put this down to lipoedema! I have every other symptom! Thank you for information
This is all me. I’m in tears. Ty for sharing.
Hi @faafo1976! Welcome and you are so welcome 😊 It doesn't seem like it at the beginning, but it gets easier ❤
A symptom or sign you forgot to mention is the "BRACELET EFFECT" lipedema doesn't effect the hands or feet so your legs are drastically larger than your ankles. You may have Lipedema if your body is shaped like a Christmas tree or a triangle, my measurements for example, are 31-28-43 little waist with big hips and bottom. I was diagnosed with Lipedema and Lymphedema 5 years ago. You can also have both Lipedema and Lymphedema. Make sure when you buy compression garments they fit properly or it will make your symptoms worse. And always use coconut oil on your legs.
I'm allergic to coconut. What else can I use, castor oil??
@sarahh.9717 great point about the "bracelet"! It is more pronounced on some people than on others and becomes more obvious as the disease progresses. Lipedema Foundation has some helpful pictures for anyone who wants to see examples: www.lipedema.org/staging
@@virginiabaker4471re: coconut oil - I’m not sure why they are recommending this? Maybe to help get the garments on? If so, I would use bodyglide or something similar made with dimethicone. Or a “no chafing gel.” I have seen various companies selling them now at the big box stores like monistat, etc.
So funny you mentioned TSA!!! Ever since they started using the machines I always got patted down…BUT since being on Keto for a year and my inflammation has reduced a lot, the machines have stopped going off (in the last two months)!!! When I finally learned about lipedema I thought that was the culprit…and now we know the rest of the story!!! 😊
Did keto help the lipedema?
I refer to my flight security pat-downs as "full service" and almost feel cheated when they don't happen 😂
Wow. This explains sooooo much... I don't have to buy any book to understand this is what I have. It's been bugging me since forever. It's got so bad that I can often just look at someone and tell they are not "fat" fat, but that its just something else going on.
I’m just learning about this disease and really think I might have it! I am right around the line of being considered “overweight”, but kind of read as thinner. However, I’ve always felt like my body/fat is more dense than I would expect for my size (I usually describe it as being like a pitbull, small but dense haha). I have found certain things to be quite tight around my ankles/ lower legs and arms, and I’ve always had thicker thighs and butt. I have a little bit of a wing under my arms as well and the tissue is lumpy. I recently started noticing that marbley texture in certain areas of my body and have been freaking out! I went to my doctor and she said it’s just what “normal connective tissue” feels like. I really don’t think it’s normal because my partners fat tissue doesn’t feel like that at all. I don’t consider myself very hyper flexible, but can put my hands completely on the floor without bending my knees and I’ve been stopped at TSA a couple of times. Now that I’ve discovered Lipedema through my own research, I’m going to return to my doctor with more confidence. Thank you!!!
Bravo to you for being persistent @leelahickman3820! Doctors know so little about the lymphatic system that we often have to help educate them. I have a book linked in the comments and also a brochure (free!) that I like to take with me to new doctors. Good luck! It certain sounds like you could have some of the symptoms. Have you seen this video from FDRS? I found it very helpful ua-cam.com/video/T7NvrgLLlXY/v-deo.html 💕
I'm in the same boat. Maybe finding a Specialist in this area for eval.
Omg I believe this is what I have I checked all the boxes. Thank you so much for sharing awareness. 🙏🏽
@Alale6000 you found your people! Knowledge is power and you can start feeling better. Check out my conservative treatment playlist for some ideas to get you started: ua-cam.com/play/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS.html
I used to think all people had lumpy nodules as fat too since mine always felt that way, especially in my arms, legs, and rear. However, although they’re not large, my breasts have this type of fat in them too, which makes me nervous for not being able to tell the difference between a concern for cancer or just fatty tissue. I’m in my 30s so I’ve not reached the regular mammogram checks yet which usually start at 40. Since having my children I also now have some of the nodular lipedema fat in my stomach too. I’m down 28 pounds now with carnivore and I’m feeling better. I’m determined to fight this as much as possible naturally and avoid surgery. It’s good to know I’m not alone. Thanks for doing these videos!
Hi Whitni! I've heard other women talk about having it in their breasts too, so I don't think you're alone on that one. I'm also in my 30s so not sure what all our lumps and bumps will mean for mammogram checks. I guess that's the one upside of my small chest...?! Ha! So glad you are feeling good on carnivore. Feeling good has been the game changer for me far more than the weight loss. For the first time in my life I feel alive and have energy! Glad to hear you are still enjoying the channel
You should look into thermograms.
Dense breast tissue is one qualifying factor for insurance coverage of annual mammograms, rather than the normal 2-years. When to start is based on risk factors. Getting a good baseline and using the same facility each year can mean fewer callbacks. I had to have ultrasound after my hospital switched from 2D to 3D, but once they have a good map, they can tell your normal from anything new. Always make sure that you are comfortable asking questions during your routine women's exams. A good provider won't blow off your concerns.
@@sarahjensen2473 Thank you for the advice!
At my last mammogram, I was told I was lucky to have fatty boobs as they are easier to see through unlike more muscular breast tissue.
I do have beads on my thighs and have since I was 25. I also remember looking at my legs down by my ankles thinking,” I don’t have Kankles but why does my skin look so weird…as in lumpy? Now I know.
thank you to all the sturdy women who have suffered as I have! Trying to not care about my lumpy lookin legs!
Wow! I am 65 and thought I knew a lot about my female body. I had no idea about lipedema (apparently, neither does my spellcheck). Thank you!
This is the best explanation I’ve heard! Thank you so much. I’m glad I finally have an explanation to strange issues I’ve been dealing with my body since puberty.
I fit basically all of the signs you mentioned, but the blood pressure cuff is the dead giveaway for me. That is excruciatingly painful for me.
And I’ve always had bat wings that I’ve never been able to get rid of no matter how much weight I’ve lost. I have a consultation with a plastic surgeon next month for an official diagnosis and so I can hopefully move forward with surgery. I’m very much looking forward to it ❤️
How did your consult with plastic surgeon go?
Yes. Liking and commenting for awareness. I have had 1 surgery already and would really like it if it was covered by medical.
OMG YOU ARE AN ANGEL FROM GOD, I'm crying real tears!!!😢😢😢 Thank you for sharing your story and helping the world. Much love from Houston, Tx!!❤❤❤
Thanks for the education and your pleasant and humble presentation.
Thank you, thank you, THANK YOU! Watching your video is like hearing a bio of my body. I am blown away as I have always just thought I was fat. I am so incredibly defeated as my legs look so disformed. I only wear pants as a dress, skirts or short expose, way more than I am comfortable with. We put in a pool last summer as it was a dream for my husband and our daughter, but all it has been for me is a nightmare as I am constantly trying to figure out how to hide my legs and my "wings" that jiggle constantly. Your video has encouraged me to find a doctor who deals with lipedema, as NO doctor I have seen has ever brought this up.
I look forward to learning more from you!
Yes, the airport alarm thing happens to me all the time. My thighs set off the machine. So happy to know what this could be and more importantly, that this can go away.
I never knew this I have felt so defeated about my body thank you for this information
Oh. My. God. 😢 I want to vomit. You just solved my mystery.
Big hugs. You'll get through with getting better.
I realised that this is what up with me when I stared tracking my calories a few years ago for fun.... I naturally undereat apparently. I was closing out the day at about 500 calories short of the deficit they set for me.
I hit me that this fat must be something else because I'm actually pretty active and I don't overeat... So what gives.
Now I'm looking for what mineral I'm probably short on, or what toxic mom drama I need to release because those are like suspects.
I really like your vibe. It's personal and hope-based! Go you!!!
Thanks for the video! I'm a Rebekah too! I now know why I kept setting off the machine when I was much heavier, lol. So glad I saw this, I have answers now.
Hi! Thank you so much for sharing your story! Today was a really bad day for me…. I’m overweight ( about 220 pounds) and even if I lose some weight is very easy to put it back in a snap! Plus I have big flappy ugly horrible arms with a “fold” in the upper part which I understand why it is here! Today I went to the plastic surgeon for a
consultation to see if I finally could get them fixed with a lipo! He told me he couldn’t help me, not through the airsculpt procedure I was hoping for. He told me that probably that fold couldn’t be fixed at all! I don’t wear sleeveless shirt, I don’t even look at me in the mirror if I’m naked, I feel so bad all the time and I feel guilty about the way I look… you gave me the explanation nobody did and I feel exactly like you describe, even about the airport ! I cried a little bit in the car on my way home but I didn’t want to accept a “there’s nothing you can do”, so I started to dig online and after a couple of hours I found you! Please help me to solve this problem! Now I know that I always had it even when I was a thin and nice girl. Now I’m 60 and I’m tired to live with this myself. I really hope you can give me some confidence and hope to change my life! Thank you.
PS Forgive my bad English! I’m an italian who has been living in the States for 7 years now but I really need to improve it!
I think your english is excellent! Best of luck in your search❤
Your English is beautiful. All the best for you 🙏🏼♥️🙏🏼
Firstly your English is fantastic! Secondly your comment really saddened me. You sound so very very sad and you are exceptionally hard on yourself. I have been over weight in the past and struggled with bulimia throughout my life, I hated the way I looked and was so self conscious, depressed and embarrassed of my shape, I am a pear shape. So I really felt so sad hearing you be so hard on yourself. If I can give you advice, I put on a lot of weight after an accident, it was horrible, but after I did some healing and worked really hard on myself, I finally came to a place of acceptance. Since then, my weight has dropped significantly and although I will never be thin, I’m
Ok with that now.I’m 54 soon and I am never going to have the body of a 18 year old and I will never be blessed with the perfect figure! That’s ok, I’m at peace with that now. I had to let it go and find peace and acceptance with myself. Once I let that negative self talk go, the weight came off and I was able to focus on the things about myself that I never had time to think about before as I was too busy hating myself. I took 49 years to learn to live myself and be content with who I am. I may not have a model figure, but I am a kind person, I’m great at my job as a nurse, I care about my family and I am a wonderful mother. Find things about yourself that are good about yourself, I bet you are a kind and empathetic woman with a lot of love in your heart, wouldn’t you rather be that than someone with a perfect figure and a terrible personality? Please be kinder to yourself, try to accept that you are who you are and focus on the positive things about yourself. I bet you are beautiful and you don’t even know it! We are both getting older, I pray that you can find peace in ourself and happiness with who you are. Start with a small walk each day, even 5 minutes! It will be good for your mental health x good luck lovely lady. ❤
This was the most practical video i have watched on Lipadema. Thank you so much ❤
You have the best attitude
Thank you! 🥰 I have my "days" too 😉
37, just found out about this because for the first time I am actively going to the gym multiple time a week, walk kilometres every time, increasing my pace and the incline and the scales are not shifting and I want to cry. Everyone keeps saying to change this and that but I have done all the things, I have changed all the things.
Red lights going off all over! Big arms that won't fit into blouses or jackets, no boots that fit, lumpy, bumpy arms that look like Popeye. And painful arms and thighs. I have lumps all over my body, some on my arms arm so big, I always try to wear long sleeves. Of course those blouses are at least 3x larger than I need any where else. I'm 71 and was pretty normal size until I hit 30. I got married, my hormones went crazy and I gained 60 lbs in a very short time. I've been fighting to lose it ever since, to no avail. I'm going to take your info to my female doctor who i really trust. Wish me luck🤞🤞🤞
THANK YOU for pronouncing it right!
I have saddlebags that wont budge and abnormal cellulite that covers 3/4 of legs. Overwieght but not obese. And I don't have kankles. Just want to share as we who have lipidema can look different from each other.
Yes, great point! There are several different "types" and lipedema can show up in many different ways. Thanks for sharing that :D
This is my problem too😢
Big hug, Cheryl! Do you have any swelling in your ankles? Getting into good compression reduced my ankles pretty quickly, but it will depend on what else you have going on
Me too, iv spent years YoYo dieting and I always end up regaining the weight again because I end up really skinny up top and there is barely a change in my saddlebags. So I still have to dress the same trying to hide my hip dips because my thighs are soo wide for the rest of my body. I bruise there like a peach.
I am hoping to get just my saddlebags liposuctioned in a few years. Lymph sparing lipo is the best procedure they say. @@robloxnews2670
Yes! I’m been check at the airport and I never knew it was Lipedema!! 😮 so glad you confirmed this!
Holy moly!! This explains a lot! I thought this was so normal!!
Really a nice young woman,....and a super video about this condition....
Oh my gosh… yes the airline thing… they did that to me.. I couldn’t figure out why they pulled me over… 😲🙄
I thought🤔, they looked at my hands and face and they look normal and thought I padded myself , trying to hide something,.. .. it was such a awful feeling being singled out 😞 for being overweight. I have all the symptoms… I just found out about this a year ago..🙏🏻
it made so much sense…
The doctors I’ve talked to about it have never heard of it and dismissed me trying to say it’s lipedema instead of just being overweight. “You just need to go on a diet… you must be lying about how much and what you eat”🙄😞
This last 4 months it seems to be getting worse.. I’m praying I can reverse some of this 🙏🏻🫤
So glad to have found this channel 😊
I stopped flying to see my son...over that same thing...I was hurt and embarrassed...😢 Airline should give u a pass for this disorder...
@@lhale9176 🤨 while I have empathy for this situation, I think what you should really advocate for is just a more general private screening. You cannot be above the law when it comes to airline safety....to be blunt, overweight people can be terrorists too.
I was diagnosed with Ehlers danlos syndrome and I definitely have lipedema. My doctor never even mentioned the word lipedema to me and it is quite evident I have it. I am unfortunately constantly taking hibuprofen for pain and some days I can’t walk. I am not morbidly obese but a little over weight. My lower body is so much bigger than my upper and I call myself the Queen of cellulite and varicose veins…I was ridiculed about it all my life. I am Happy to find this community! Thank you for sharing ❤
OMG‼️ All my life I’ve just thought because I let myself get so fat, that was the reason why my legs were so gross and my arms too. I hit everyone of the symptoms you mentioned except hyperextending. 😳🤷🏻♀️
Me too
Thank you Rebekah for your comprehensive video. I’m 65 & have just realised what’s been going on with my body all my life! I’ve been searching the internet for answers in the last 2 months & I’m finally going for liposuction. I’ve always been like 2 different people joined at the waist with a smaller top but massive bottom half. I’m soooo fed up trying to find boots to fit & clothes too. My granny was the same shape so I know I’ve inherited it from her. Like her, I have the cuffs at my ankles which got worse after menopause; apparently the condition can be triggered by puberty, pregnancy & menopause. Mine has increased since menopause. Thank you for your lovely, informative presentation about this condition. You’re a gem xxx
@lindamcgrath3027 I'm so glad you are finally getting answers and I hope you get some relief soon! Sending big hugs! Welcome to the club
Didn’t know about this, learning something new today. Thank you
I cant believe that I am 37 and just now I am finding out about this!!! Everything you are saying is me!!! Ever since I can remember I have had bigger arms and legs! I have never worn a shirt, I have never bought a boots if not ankle boots and even those are a bit tight at the ankles!!! I always felt like it was not normal but everyonnnneeee including docotor tell me I just need to diet and exercise! No one understands
OMG! That is why I constantly get patted down at the airport!? It’s gotten to the point where I hate flying because of having to get felt up every time I go through security.
I've always had leg pain and would take Tylenol for pain. I have also had trouble fitting my calves into boots. Now I started keto a few yrs back and lost weight but my thighs never got any better.
Here's the interesting thing, I had a thigh lift with lipo last yr and of course my legs looked a bit better last yr. Now, they are getting back to how they used to look! I am now trying this cavitation device and am trying to push on weights to see if that helps as MEDICARE doesn't pay for lympedema desease, so I have to find my research on how to care for this. My arms are also affected by this. I started blaming keto because of the amount of fat intake. Im still apprehensive about that, but, Im not sure, as I love Keto. Ty for this video and I will continue to tune in. ❤
Keto helps you burn fat, since your metabolism becomes tuned to using it for fuel, instead of carbs. Maybe reduce your nut &/or dairy intake percentages?
You are a bright light. Thank you!
OMG! This is me! You just described me! I have never been able to wear boots. No matter how thin I am, my calves, thighs and arms are always bigger than the rest of me. I have never wore sleeveless clothes because of embarrassment of my arms. I bruise with touch. I even had a doctor send me for a blood timing test once after a OBGYN appointment because my legs were so bruised. I am stopped at the airport after every scan. So frustrating. I’m 61 years old and no doctor has EVER mentioned this! I would rather have a pap smear than have my BP checked! So painful to have those cuff tightened.
@lceec7012 you found your people! Welcome to the sisterhood!
What are treatments for lipedema and lymphardema. What is the difference? Can anyone explain please ?
Thank you so much for explaining what I have been experiencing most of my life and never understood what it was, I am 52.
@monicamay2917 you found your sisters! Welcome to the club
Thank you for your wisdom ✨
You just opened my eyes to get diagnosed. This vid was soooooooo clarifying.
I was diagnosed with lymphedemea/limpedema several years ago. I had 'sturdy' legs since mid teens and was never able to get boots that fit my calves. And I was a normal weight otherwise. Through my 20's I was very physically active with biking, running and yoga. My legs always stayed heavy.
After having children in my 30's my weight started creeping up and in my 60's lymphedema was diagnosed and I had large fat deposits around my ankles that never go away despite massage treatments and wrapping. I now wear prescription compression stockings every day.
And yes, I set off the TSA machines every single time. I thought it was the stockings.
I'm so glad you finally found your way to some answers, @alsotroemerica1031! It's unacceptable how long it takes most of us to figure out what's going on with our bodiesI really hope knowledge keeps spreading and things get easier for those coming after us. 💗
I have about the same story. I was diagnosed 2 years ago, after my back surgery. My legs hurt so badly now and my ankles swell.
I am 65 and retired Women ‘s Health RN land never knew about this disorder until recently. I have, I believe seen it in others and am pretty certain have it myself to maybe a milder degree than some. The nodules in my arms, thighs and legs. I. Also bruise very easily in my legs and have continual swelling in my legs which never resolves but never extends to my feet or ankles. Which I have always thought was strange! Now I’m thinking my daughter may have it as she has the hyper mobility and sets off the detectors at the airports! Thanks for posting this.
I found this video very helpful. Thank you
Hi, great that keto has reversed a lot of your lipedema symptoms. Hardly anyone hs commented on that. I've heard/read that carnivore and ketovore diets do that too. Both of those also being low carb. Definitely something to try out as it wont cost you, wont hurt you, and has a lot of other health benefits too.
Thanks for sharing the info😉
@judithowens8212 thank you! I agree that keto doesn't always get as much attention as it should with lipedema. Even at the Fat Disorders Research Society (FDRS) conference in 2023 very few people were talking about it, even though I am certainly not the only person it has helped. I've never felt better in my life!
Thank you Rebekah, I really enjoyed watching this latest upload.. Your smile and laughter is beautiful, you have such a beautiful aura 😘💋. I was only told in February that I have lipedema but always had swelling.. I was constantly going to my Dr's and they kept saying lose weight etc. I walk 14miles a week and am active and am size 14 but still the legs would swell during the day. Looking back blood pressure monitor were painful and definitely felt sharp pain picking up my mums cat lol and I did end up buying wide calf boots in the winter as my legs would be uncomfortable during the afternoon. I have recently noticed the bat wings.. I would build muscle on top but still the skin was loose.. I just want to send love and hugs to all ladies that have this disease and you are such inspiration to me as Rebekah on the Internet all videos are about liposuction etc and that is not what I want to see as its upsetting but you have shown us that this condition does not have to progress if we maje lifestyle changes and be consist with foods and exercise and drink plenty of 💦 water and invest in compression and red light therapy and take vitamins and do drainage and dry brushing.. Thank you 😘 🤗 ❤️
Hi Kam! Your kind words make me blush every week - thank you. I am so glad you continue to find the channel helpful and that you sound like you're falling into a great self-care routine. I hope each day keeps getting just a little better. Giant hugs!!
I am sure I have it. Until my 20's no sign of it but when I got a sit down job in a bank, my legs started to get heavy. A low fat diet in my 20's got my legs down. However, never since have I got them down. I believe swimming can help
This is so useful! So much of what you’ve mentioned resonates. Even after getting weight loss surgery and loosing almost 100 pounds (it was always SO HARD TO lose weight naturally) I still have lumps on my legs, buttocks, my arms look exactly like yours with the beady texture and I still sruggle finding boots!
Thank you so much for sharing this important information with us 🙏🏼😊
Love seeing all these reactions. I knew I wasnt alone but it feels to good to "see you"
I could wear some boots. My upper legs are a lot worse than my calves.
I used to think I had extreme cellulite which started at 14, skinny but ugly legs already.
I feel horrible wearing skirts, dresses and swimwear. Not only because of the bumpy legs but the bruising too.
Went to Vietnam, and because of the pedals of pushbike rides it looked as if I had been in a terrible accident.
I am 59 this year so maybe I should start to accept it finally but I can still cry about it.
Do other people have many little veins too. I have them treated sometimes but if I bruise a lot it still hasn't improved the look much.
My mother had the same legs as mine and I remember thinking that my mom had the ugliest legs of all the moms I knew. Luckily I never said it to her.
I think my daughter is prone to get it too.
Btw the machine in the airport went of. If you looked at the picture it looked as if I had strapped a pack on my belly. Never realised why it went of.
I'm late to this video, but I'm so glad I found it! Learning a lot about this and realizing that I also have this condition. Great information for someone discovering the issue. Thank you for sharing, there's not a lot out here but through your platform and a couple others, I'm learning a lot and this has really been eye opening. Ty!
I am french ... thank you for your pronunciation ...
I was going to ask therapist for a knee replacement and she mentioned I might have it. Wow what a relief to find out I wasn’t just fat. Never had boots never had jeans.
I have H-EDS, Chronic Pain from this, Had Lymphoma / Stage IV Burkitt's Lymphoma and may years later developed Lymphedema, constant injuries, scoliosis... I'll check out your website. I just began listening to Chuck Ehrlich, MS talks at the Lymphatic Network Organization's Patient Symposium about how to starve out lymphedema
Wow! This video fits me to a tee. Thank you for all the valuable information.
Thank you so much for the video - I have every symptom you describe. I am always screened by TSA. I am getting the brochure to share with my GP.