This was so helpful. I have always thought my arms and legs were just disproportionately fat…and the pain I felt/feel caused me shame. I thought this is just what happens because I can’t control my weight. You just entirely described me. You are so helpful and I appreciate you.
I'm sorry to hear you have lipedema - but I'm happy you now finally understand what's up with your body! Knowledge is power! Thank you for writing this comment - it means the world to me to know the video has helped you. Sending lots of love! You've got this! ❤
The most common roadblock is in finding a physician who is qualified to diagnose this condition. That way my GP will be aware that this is a real condition and hopefully choose to learn more.
Yes, absolutely. However, it is also very important not to wait to get a diagnosis before implementing strategies to improve the symptoms because the medical system does not offer any treatment once they give you the diagnosis. So, if someone thinks they have lipedema after learning about all the symptoms, they probably have. And then it is important to just get started to self-manage.
Sorry I missed replying to you until now, Katie! I am SO happy to know that this video helped you understand what's up with your legs. It can be such a relief to finally understand what's going on and why we have all those odd symptoms. And YES - I love your attitude: knowledge is power, and you can now look into solutions! And I promise you that you can improve your symptoms when you find solutions that are right for you and you are consistent with them! You've got this! I'm cheering you on! ❤
Hey Beautiful Lady! Nicely done. I have a few additions (based on MY lived experience)…in addition to having Lipedema, I also have Ehlers-Danlos Syndrome/hypermobile subtype…another autosomal dominant connective tissue disorder… And if I remember correctly, the “comorbidity” % of the 2 conditions (assuming they aren’t just different manifestations of the SAME condition) is around 80%. I’ve had the EDS Dx for a decade, but the Lipedema Dx was suggested by my Vein and Vascular doctor after bilateral treatment on my legs. I also hit the Lipedema jackpot “PLUS A COMPLIMENTARY DRINK”, as I am one that had swelling and nodules /tissue my lower abdomen as well…I used to get horrible lower back pain before periods. The redundant/loose skin of EDS gives room for the swelling… ALSO…that tissue never seems to get warm. The “matressing” ? I believe it is called? is cool to the touch. And if I rub (say under my arms) with a warm washcloth it will turn red. Heating pads (or hot pizza boxes…NORMIE PROBLEM 😂) leave a Lacey red flat rash expression on my legs. Overexposure to the sun does that as well. That is true for ALL of my lippy spots…which include arms, booty, hips, “apron”, thighs, calves…The hands, ankles, feet, face/head (YES! It’s a thing) have been spared…but if I’m having a major flare, my face gets very rounded and puffy. I am just now leaving about the hormonal implications (much to process)! This was quite verbose…but my additions to your already ACCURATE list of MY symptoms! You are wonderful… Gentle hugs!🤍🙏🏼🕊️
Hey Andreaaa 🥰 Thank you SO much for adding to the list of common symptoms! I appreciate this so much! This will for sure help many women understand their bodies better as this post gets to live here and be read by many over time! Thank you! ...And...man, you've definitely hit the lipedema jackpot "plus a complimentary drink"...haha😂... I love how you're able to joke about it. But knowing you, that's one main reason you are managing everything so well. I know it's not easy in any way, but your attitude, your mindset and determination to reduce your symptoms best possible while simultaneously creating a truly healthy body and mindset - and, well - LIFE - is inspiring. Thank you for being you, and thank you for sharing you with the world, Andrea! ❤ Big hug. T
Thank you! This presentation is easy to follow and understand. I have been recently diagnosed at stage 3. I am fairly certain my teen daughter is showing signs on knees and thighs. Has always been sensitive to any pressure on skin. I believe she will watch this and understand better. Myself starting aqua exercise and compression, clean eating too.
Thank you for your encouraging comment - and you're very welcome! ❤I'm sorry to hear you're at stage 3 - I know it's challenging. How wonderful that you're starting aqua exercise, compression, and clean eating! Well done. I have no doubt that you'll soon feel it is making a difference. I'm cheering you on! Yes, unfortunately, it is very likely that your teenage daughter also has it when you have it. I hope watching this video can help her - and start implementing strategies to prevent it from worsening if she has it. Finding out at an early stage can make such a big difference. - And it can give her a reason to live a very healthy life going forward, so if she can learn to see it as a gift in this light, it could potentially transform her life in a good way. Sending a big hug to you both! 😊
Thank You Your video confirmed many ?’s I’ve had for the past 2 years. My areas are my thighs/glutes/ ankles, I still have Shapley calves. I will look into your research 🧐
Oh this is so me …the way you “feel “ about yourself and judged on what you eat …like I’m eating the whole cake in a closet !!! I can’t fit in most shirts the tight sleeves !!! The pain actually Same with legs Thank you for these videos ..I’m so glad I don’t feel alone snd the education on this condition is so well relieved Thank you
I'm sorry to hear you have these challenges, Arissa, but I'm glad to hear that the video resonates with you! It is really important we speak about this openly so we know we're not alone! Thank you for contributing to that conversation by sharing here. I appreciate you! ❤
People often assume I eat junk. I don’t eat fast food, very little sugar, and I avoid the SAD diet of course too. But yet people just think I eat terrible foods…I know this because they will say something like…oh…you’re eating healthy today, as if that isn’t how I always eat.
@@alr293 I'm sorry you're experiencing this. Unfortunately, it's the reality for many of us to experience this, but it is a good opportunity to build strong self-confidence, trust in ourselves - AND - surround ourselves with people who are interested in learning and understanding what is going on in our lives (and body) and who supports us and genuinely cares about us.
Many lymphedema clinics can diagnose lipedema, but unfortunately, not all. But that's the first place I'd try. (I personally got diagnosed at a hospital lymphedema research department where they also had knowledge of lipedema (at least enough to not misdiagnose as lymphedema as many do). Have you watched my video on pursuing a diagnosis? Here's the link; ruclips.net/video/Sr6qfJHQKrU/видео.htmlsi=H4RQScnaU4uUbgNk
What stage of lipedema do you have? My arms and legs/knees look exactly like your video describes. I have been doing Keto for almost a year and have lost 30 lbs but still have this condition.
Oh, it sounds like we're leg and arm twins!😄I have stage two lipedema. I'm glad to hear you've lost some weight with keto. As you mentioned, keto will not cure lipedema. But it WILL reduce its symptoms and can slow down or even prevent its progression. There is no known cure for lipedema currently, so keeping symptoms minimal and slowing/stopping progression is what it's all about! Sounds like you're doing an excellent job at that! 👏
Oh my goodness, I relate so much to the big gap in the waist thing with my pants. I can't really wear anything fitted, I wear leggings with stretch fabric because my bum, hips, and thighs are a size 22 (UK) but my waist is about 2-3 sizes smaller. Very frustrating.
Oh, I feel you, my friend! One of my favorite things to wear is stretchy wrap dresses because they allow a personal fit at the waist with the wrap band while flowing beautifully over my wider hips with exactly the width needed. (I wear my compression tights under as if they were stockings!)
Amazingly stunning discovery of finding your stream- years of struggle, tons of medications , ignorant diagnoses, heavy consequences as result of this, years of life lost, destroyed, poisoned with misunderstanding or wrongful diagnostic not to mention malpractice surgery with sad consequences to live with being unable to change anything!
I'm SO happy to hear you've come closer to understanding what is really going on in your body! I'm sorry to hear you've been going through all this. It really is devastating what so many women have been going through - and still are - because the medical world is so uninformed about this condition. But knowledge is power! So, if you've now realized that your symptoms may be caused by lipedema, there's a way forward! You've got this! I believe in you! ❤
Hi , yes, I also feel painful knots, as is very common with lipedema. They are often referred to as "nodules." Mine are most prevalent on my inner thighs and in the "hang" of my upper arms.
Thank you-you're very welcome! I'm so sorry about the problems with the links. I just updated my website, and all links should work now! Please try again! 😊
My vascular doctor told me I had a more serious problem with limpedema with veins issues but didn’t tell me anything to do about it. They did want me to wear compression stockings (thigh high) but they are so painful to put on I usually don’t get any higher than 1/2 calf. Do you have any suggestions for putting on stockings easier. They won’t remove veins if you can’t wear stockings.
I recommend getting a pair of compression tights that are made to measure for your specific measurements. (I wouldn't do thigh highs - they tend to fall down, or, if tight enough, tend to cut off circulation, and that's the last thing you'd want when you have lipedema - and vein issues on top of it. If you can't get them up more than half a calf, they don't fit you. (I remember my first couple of pairs of poor-quality compression that didn't fit me well - so painful to wear and almost impossible to get on.) My favorite brand is CzSalus. Get made-to-measure sizes at their own website: Cizeta.it or off-the-shelve sizes on Amazon. (You might do fine with their "class 1" thinner compression in off-the-shelf sizes). Good luck!
Hey, i have all the possible signs of lipedema, the only difference is that i don’t feel the nodules. Is it possible? i relate to everything else apart from this
Hi, yes, it is possible to not feel the nodules and still have lipedema. It depends on what stage your lipedema is in and can also depend on other things going on in your body. I did not feel nodules in my own body for many years despite having many of the other lipedema symptoms. But I'll also say that once I finally learned what they actually feel like in the early stages, I realized I might have felt them in my own body earlier, but I just didn't know they were lipedema nodules as they felt more like a texture of tiny tiny grains all over. I thought it was just what a bit of excess fat felt like...
@@lipedemasolution omggg exactly,i feel like i have very tiny grains all over my legss!!!! Thankyou so much, you have no idea how much you’ve helped me!
I also won the lottery and have it everywhere and have it in my lower tummy from the onset of puberty.It is one tuff condition to deal with. I only found out 2 1/2 years ago. I can't tell you how many doctors are clueless. I've lived an active life, I ride dressage most days of the week and I'm an advanced skier I've had a healthy diet from the time I was a child as my mother was a dietitian. The more you can research this condition, the better you can deal in a Heathy way. It wont "fix" it but help you manage it. This is not your fault you inherented it.
Yeah, it's bananas that the medical world is so clueless about lipedema. I'm glad to hear you've been active and had a healthy diet since young - while it doesn't keep lipedema away, it for sure helps manage it so it doesn't progress out of control as fast as it otherwise could. And I love that you emphasize the possibility of dealing with it in a HEALTHY way. This is exactly my approach. We've got to take charge and get the best out of having it, make our bodies as healthy as possible (not punish it!) to reduce symptoms - and live our best possible lives with it. You mention skiing... -Do you also have lipedema in your calves? Has wearing ski boots ever been a problem for you? I love skiing, but man, the challenge of finding ski boots that I can wear for more than an hour or so before the squeezing of my lipedema calves is too painful. Any tips for that? ⛷😅
This was so helpful. I have always thought my arms and legs were just disproportionately fat…and the pain I felt/feel caused me shame. I thought this is just what happens because I can’t control my weight. You just entirely described me. You are so helpful and I appreciate you.
I'm sorry to hear you have lipedema - but I'm happy you now finally understand what's up with your body! Knowledge is power! Thank you for writing this comment - it means the world to me to know the video has helped you. Sending lots of love! You've got this! ❤
The most common roadblock is in finding a physician who is qualified to diagnose this condition. That way my GP will be aware that this is a real condition and hopefully choose to learn more.
Yes, absolutely. However, it is also very important not to wait to get a diagnosis before implementing strategies to improve the symptoms because the medical system does not offer any treatment once they give you the diagnosis. So, if someone thinks they have lipedema after learning about all the symptoms, they probably have. And then it is important to just get started to self-manage.
You have just described all of my symptoms. I always thought I just had fat legs. Thank you! Now I can look into solutions 😊
Sorry I missed replying to you until now, Katie! I am SO happy to know that this video helped you understand what's up with your legs. It can be such a relief to finally understand what's going on and why we have all those odd symptoms. And YES - I love your attitude: knowledge is power, and you can now look into solutions! And I promise you that you can improve your symptoms when you find solutions that are right for you and you are consistent with them! You've got this! I'm cheering you on! ❤
Great video 👏🏻
Thank you for taking the time to say that, Melissa. I'm glad it resonated. ❤
Hey Beautiful Lady! Nicely done. I have a few additions (based on MY lived experience)…in addition to having Lipedema, I also have Ehlers-Danlos Syndrome/hypermobile subtype…another autosomal dominant connective tissue disorder… And if I remember correctly, the “comorbidity” % of the 2 conditions (assuming they aren’t just different manifestations of the SAME condition) is around 80%. I’ve had the EDS Dx for a decade, but the Lipedema Dx was suggested by my Vein and Vascular doctor after bilateral treatment on my legs. I also hit the Lipedema jackpot “PLUS A COMPLIMENTARY DRINK”, as I am one that had swelling and nodules /tissue my lower abdomen as well…I used to get horrible lower back pain before periods. The redundant/loose skin of EDS gives room for the swelling…
ALSO…that tissue never seems to get warm. The “matressing” ? I believe it is called? is cool to the touch. And if I rub (say under my arms) with a warm washcloth it will turn red. Heating pads (or hot pizza boxes…NORMIE PROBLEM 😂) leave a Lacey red flat rash expression on my legs. Overexposure to the sun does that as well. That is true for ALL of my lippy spots…which include arms, booty, hips, “apron”, thighs, calves…The hands, ankles, feet, face/head (YES! It’s a thing) have been spared…but if I’m having a major flare, my face gets very rounded and puffy. I am just now leaving about the hormonal implications (much to process)!
This was quite verbose…but my additions to your already ACCURATE list of MY symptoms! You are wonderful… Gentle hugs!🤍🙏🏼🕊️
Hey Andreaaa 🥰 Thank you SO much for adding to the list of common symptoms! I appreciate this so much! This will for sure help many women understand their bodies better as this post gets to live here and be read by many over time! Thank you! ...And...man, you've definitely hit the lipedema jackpot "plus a complimentary drink"...haha😂... I love how you're able to joke about it. But knowing you, that's one main reason you are managing everything so well. I know it's not easy in any way, but your attitude, your mindset and determination to reduce your symptoms best possible while simultaneously creating a truly healthy body and mindset - and, well - LIFE - is inspiring. Thank you for being you, and thank you for sharing you with the world, Andrea! ❤ Big hug. T
Thank you! This presentation is easy to follow and understand. I have been recently diagnosed at stage 3. I am fairly certain my teen daughter is showing signs on knees and thighs. Has always been sensitive to any pressure on skin. I believe she will watch this and understand better. Myself starting aqua exercise and compression, clean eating too.
Thank you for your encouraging comment - and you're very welcome! ❤I'm sorry to hear you're at stage 3 - I know it's challenging. How wonderful that you're starting aqua exercise, compression, and clean eating! Well done. I have no doubt that you'll soon feel it is making a difference. I'm cheering you on! Yes, unfortunately, it is very likely that your teenage daughter also has it when you have it. I hope watching this video can help her - and start implementing strategies to prevent it from worsening if she has it. Finding out at an early stage can make such a big difference. - And it can give her a reason to live a very healthy life going forward, so if she can learn to see it as a gift in this light, it could potentially transform her life in a good way. Sending a big hug to you both! 😊
Thank You Your video confirmed many ?’s I’ve had for the past 2 years. My areas are my thighs/glutes/ ankles, I still have Shapley calves. I will look into your research 🧐
I am glad the video was helpful! 😊
Amazing video. Thank you!
You are very welcome! Thanks for leaving a comment! ❤️
All what you mentioned is 100% correct
I'm glad it resonated! Thanks for sharing. 😊
Oh this is so me …the way you “feel “ about yourself and judged on what you eat …like I’m eating the whole cake in a closet !!!
I can’t fit in most shirts the tight sleeves !!! The pain actually
Same with legs
Thank you for these videos ..I’m so glad I don’t feel alone snd the education on this condition is so well relieved
Thank you
I'm sorry to hear you have these challenges, Arissa, but I'm glad to hear that the video resonates with you! It is really important we speak about this openly so we know we're not alone! Thank you for contributing to that conversation by sharing here. I appreciate you! ❤
People often assume I eat junk. I don’t eat fast food, very little sugar, and I avoid the SAD diet of course too. But yet people just think I eat terrible foods…I know this because they will say something like…oh…you’re eating healthy today, as if that isn’t how I always eat.
@@alr293 I'm sorry you're experiencing this. Unfortunately, it's the reality for many of us to experience this, but it is a good opportunity to build strong self-confidence, trust in ourselves - AND - surround ourselves with people who are interested in learning and understanding what is going on in our lives (and body) and who supports us and genuinely cares about us.
These symptoms are spot on. Where to go for diagnosis?
Many lymphedema clinics can diagnose lipedema, but unfortunately, not all. But that's the first place I'd try. (I personally got diagnosed at a hospital lymphedema research department where they also had knowledge of lipedema (at least enough to not misdiagnose as lymphedema as many do).
Have you watched my video on pursuing a diagnosis? Here's the link; ruclips.net/video/Sr6qfJHQKrU/видео.htmlsi=H4RQScnaU4uUbgNk
What stage of lipedema do you have? My arms and legs/knees look exactly like your video describes. I have been doing Keto for almost a year and have lost 30 lbs but still have this condition.
Oh, it sounds like we're leg and arm twins!😄I have stage two lipedema. I'm glad to hear you've lost some weight with keto. As you mentioned, keto will not cure lipedema. But it WILL reduce its symptoms and can slow down or even prevent its progression. There is no known cure for lipedema currently, so keeping symptoms minimal and slowing/stopping progression is what it's all about! Sounds like you're doing an excellent job at that! 👏
Good stuff ! ❤
I'm glad you found it useful! ❤️
Oh my goodness, I relate so much to the big gap in the waist thing with my pants. I can't really wear anything fitted, I wear leggings with stretch fabric because my bum, hips, and thighs are a size 22 (UK) but my waist is about 2-3 sizes smaller. Very frustrating.
Oh, I feel you, my friend! One of my favorite things to wear is stretchy wrap dresses because they allow a personal fit at the waist with the wrap band while flowing beautifully over my wider hips with exactly the width needed. (I wear my compression tights under as if they were stockings!)
❤thankyou so much .
You are very welcome, Wendy! ❤
Amazingly stunning discovery of finding your stream- years of struggle, tons of medications , ignorant diagnoses, heavy consequences as result of this, years of life lost, destroyed, poisoned with misunderstanding or wrongful diagnostic not to mention malpractice surgery with sad consequences to live with being unable to change anything!
I'm SO happy to hear you've come closer to understanding what is really going on in your body! I'm sorry to hear you've been going through all this. It really is devastating what so many women have been going through - and still are - because the medical world is so uninformed about this condition. But knowledge is power! So, if you've now realized that your symptoms may be caused by lipedema, there's a way forward! You've got this! I believe in you! ❤
I ‘ve been diagnosed with lipedema 1 1/2 year ago
I wanted to find out do you also feel knots on your hips & thighs what ch are painful
Hi , yes, I also feel painful knots, as is very common with lipedema. They are often referred to as "nodules." Mine are most prevalent on my inner thighs and in the "hang" of my upper arms.
How do I know if my legs have lipidemia or cellulite?
My legs were so painful is someone bumped me or if my small dog or kids sat on my lap.
Great video, thanks ! Sadly the link Lipedema solution does not work, and neither the link More resources .
Thank you-you're very welcome! I'm so sorry about the problems with the links. I just updated my website, and all links should work now! Please try again! 😊
My vascular doctor told me I had a more serious problem with limpedema with veins issues but didn’t tell me anything to do about it. They did want me to wear compression stockings (thigh high) but they are so painful to put on I usually don’t get any higher than 1/2 calf. Do you have any suggestions for putting on stockings easier. They won’t remove veins if you can’t wear stockings.
I recommend getting a pair of compression tights that are made to measure for your specific measurements. (I wouldn't do thigh highs - they tend to fall down, or, if tight enough, tend to cut off circulation, and that's the last thing you'd want when you have lipedema - and vein issues on top of it. If you can't get them up more than half a calf, they don't fit you. (I remember my first couple of pairs of poor-quality compression that didn't fit me well - so painful to wear and almost impossible to get on.) My favorite brand is CzSalus. Get made-to-measure sizes at their own website: Cizeta.it or off-the-shelve sizes on Amazon. (You might do fine with their "class 1" thinner compression in off-the-shelf sizes). Good luck!
Thanks so much!!
@@nancyzihlman8862 you’re very welcome 😊
Hey, i have all the possible signs of lipedema, the only difference is that i don’t feel the nodules. Is it possible? i relate to everything else apart from this
Hi, yes, it is possible to not feel the nodules and still have lipedema. It depends on what stage your lipedema is in and can also depend on other things going on in your body. I did not feel nodules in my own body for many years despite having many of the other lipedema symptoms. But I'll also say that once I finally learned what they actually feel like in the early stages, I realized I might have felt them in my own body earlier, but I just didn't know they were lipedema nodules as they felt more like a texture of tiny tiny grains all over. I thought it was just what a bit of excess fat felt like...
@@lipedemasolution omggg exactly,i feel like i have very tiny grains all over my legss!!!! Thankyou so much, you have no idea how much you’ve helped me!
@@noor11239 I'm glad you asked your great question and that you now have a better sense of what to look for!
I also won the lottery and have it everywhere and have it in my lower tummy from the onset of puberty.It is one tuff condition to deal with. I only found out 2 1/2 years ago. I can't tell you how many doctors are clueless. I've lived an active life, I ride dressage most days of the week and I'm an advanced skier
I've had a healthy diet from the time I was a child as my mother was a dietitian. The more you can research this condition, the better you can deal in a Heathy way. It wont "fix" it but help you manage it. This is not your fault you inherented it.
Yeah, it's bananas that the medical world is so clueless about lipedema. I'm glad to hear you've been active and had a healthy diet since young - while it doesn't keep lipedema away, it for sure helps manage it so it doesn't progress out of control as fast as it otherwise could. And I love that you emphasize the possibility of dealing with it in a HEALTHY way. This is exactly my approach. We've got to take charge and get the best out of having it, make our bodies as healthy as possible (not punish it!) to reduce symptoms - and live our best possible lives with it.
You mention skiing... -Do you also have lipedema in your calves? Has wearing ski boots ever been a problem for you? I love skiing, but man, the challenge of finding ski boots that I can wear for more than an hour or so before the squeezing of my lipedema calves is too painful. Any tips for that? ⛷😅