Do I have lipedema? Signs, symptoms, and getting help

How do you know if you have lipedema? What are common signs of lipedema legs, and the less common ones too? What do lipedema nodules feel like? Is it lipedema or just fat legs? Rebekah shows her lipedema arms and discusses five common symptoms of lipedema and how she experienced them on her own journey to healing. At the end she reveals a surprising and little known diagnostic "tool" and shares resources for discussing lipedema with a doctor to pursue a diagnosis.

#lipedema #lymphedema #lipolymphedema

[sakurifears]

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!

[Robin]

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.

[EmblemFans]

Great info! I cant believe at 62 after years of body shame, I am just learning I have lipedema.

[raedarden]

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!

[Katiediddance]

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.

[vespersongs]

I'm trying hard not to cry through this whole video. Thank you.

[SisterPatGoad]

OMG this is what I have I almost scream with pain when getting b/p checked!!! I have all the symptoms.

[knemo-ette]

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. 🤷🏼‍♀️

[MelanieFromCanada]

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.

[kc-a]

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.

[kellyanng]

My mind has been officially blown. This is me. This is me! I'm not crying you are...

[carrikartes]

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."

[lindsay]

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.

[dixiechic]

Thank you for linking the lipedema with Ehlers Danlos. I never knew the two were connected. Thank you!!

[kaitteachout]

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.

[notagain]

Thanks for the education and your pleasant and humble presentation.

[HumanGoodOne]

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

[sherrimoliverthompson]

I haven't had a pair of boots that fit my calves since I was 9 years old...😢. This explains a lot

[marcydrake]

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 YouTube suggestion 🤷‍♀️

[grammienoob]

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.