Do I have Lipedema? Signs, symptoms, and how to find a lipedema doctor

Have you heard of lipedema legs and now you are wondering how to know if you have lipedema? What are the signs of lipedema and do I have lipedema?

There are a lot of symptom checklists you can find on the internet, but in this post I want to share some of the lesser talked about signs you have lipedema, especially in the early stages. When I was diagnosed I didn’t have the prominent ankle cuff of unexplainable pain that is so often described by ladies in the later stages. But I was quickly deteriorating and literally hit the jackpot when I had a chance meeting with a doctor who has it herself. Unlike you, Sturdy Woman, I’d never even heard the word lipedema! (I assume that’s how you found this page!)

Looking back, there were clues going all the way back to my teenage years. Watch or read below to see what they were. You’ll never suspect the last one!

What are the signs of lipedema? Rebekah discusses how to know if you have lipedema and what kind of doctor to see for lipedema if you think you might have it.

“Boot” or “Sleeve” test for Lipedema

First is what I call the boot test or the sleeve test. If you have lipedema, often your lower body is several dress sizes larger than your upper body. I had – no joke – never owned a pair of boots until I learned about lipedema and lymphedema and started managing my swelling. Yes, even extended (and double-extended) calf boots didn’t fit! Arm lipedema is also common. My upper arms are much larger than “normal” and I used to struggle to fit them into any sleeves that didn’t have a good amount of spandex. So if you can’t wear boots, you might have lipedema, and if sleeves feel like straight jackets, you might have lipedema.

Lipedema Nodules

The next thing to look for are lipedema nodules. These are going to feel like grains of rice, beans, or beads under your skin. If you have arm lipedema, an easy place to feel for them is right in the gorgeous “wing” hanging down from your upper arm. Gently massage the skin there between your thumb and index finger. Guess what, that’s not what everyone else’s fat feels like! I always assumed that was just cellulite. Nope. If you feel a bunch of little bumps, you might have lipedema. Now check your legs and even your lower stomach (I have some there too!)

Easy Bruising with Lipedema and Painful Fat

Do you seem to bruise easily and even have unexplained pain? These are also possible signs of lipedema. Is it painful when a cat or small dog walks across your lap? What about when your kids squirm to get away while you are holding them? If these things hurt – or even bruise you – you might have lipedema. Something as simple as having my blood pressure taken at the doctor was excruciating prediagnosis and even bruised me once or twice. Same thing the first time I had an ultrasound on my leg veins. The supposedly gentle pushing hurt and I was bruised up and down the next day. The good news is that as I’ve healed with keto, fasting, and the rest of my self-care routine (more about that on my Sturdy Woman YouTube channel) all of that has dramatically improved.

Lipedema and EDS or Hyper-Mobility

Are you full of party tricks and the star of your yoga class? Being diagnosed with hypermobility or Ehlers-Danlos syndrome (EDS) or even just being really bendy could be a reason to learn more about lipedema. Because lipedema is a connective tissue disorder, it can commonly appear alongside these other “unicorn” and “zebra” conditions. I remember being in my twenties and having my yoga teacher yell at me to stop hyperextending my knees. “What are you talking about lady?! This is just how I stand.” (Because of my lipedema!)

Flying with Lipedema

Finally – and this one is my favorite – do you get a lot of extra attention from TSA when you fly? For some reason, lipedema and lymphedema patients frequently fail the full body scan at airport security and get pulled aside for the special pat down. Interestingly, I can pinpoint when that started and stopped in my life and can more or less chart my progress. My thighs first started triggering the alarm when I was near my heaviest, recovering from a near-death illness, and having gained more than 50 pounds in a year without any lifestyle changes. After a year on keto, only my butt was setting it off and six months beyond that it was just my lipedema arms. A few weeks ago, three years after my diagnosis, I went on a work trip to Asia and didn’t set it off once. I stepped to the side automatically, expecting the search but they just yelled me through. “Nothing to see here, ma’am! Keep moving!” Oh my god, I thought, I did it! I have healed so much the machine thinks I’m normal!

Oh my god, I thought, I did it! I have healed so much the machine thinks I’m normal!

Me at TSA three years after my diagnosis

There are different theories about why the full body scanner at airports is fooled by lipedema and lymphedema, but the one I find most convincing is about the extra fluid we carry. If extra fluid in limbs triggers the machine, that would explain why compression leggings and years of clean eating got me through. Have you suddenly started failing the body scan at the airport? It could be a sign you are carrying extra fluid from lipedema or lymphedema.

I think I have it! What kind of doctor do I see for lipedema?

If this is resonating with you and you want to look for a doctor, I have good and bad news. The bad news is it will probably be hard to find a doctor in your area who knows about lipedema unless a fellow sister can refer you to one she knows. The good news is that you might not need one. The most important thing is to find a doctor who is sympathetic, open minded, and who you trust. We have all already had enough gaslighting and mistreatment from doctors!

A vein specialist is the most likely to understand lymphatic disorders, so start with one of those if there’s one available in your area. Some of the chains like Vein Clinics of America offer free consultations and that can be a low-cost way to try someone out. Vein conditions often come with the package of lymphatic disorders, so you might also be able to get help for that (like I did)! If you don’t have one near you, a good family doctor is the next best thing. Do your homework ahead of the appointment and even send information ahead of time if you can. Below are two resources I like to share with doctors about lipedema.

  • What is Lipedema? It’s not normal fat brochure from the Lipedema Foundation. These come in multiple languages and are free. You can either download them to email or print yourself or they will ship some to you. Take one or more of these to your appointment to help educate your provider about the condition. I usually take a handful so they can share them with more patients if they want.
  • Lipedema the Disease they Call Fat: An Overview for Clinicians is a book about lipedema that will walk any doctor through what lipedema is and how to diagnose you. Again, if they are open-minded, compassionate, and truly concerned with helping you, this book will set them on the right path.
  • Once you’ve gotten through the basics with your doctor, on the second or third visit you might print out some research to share with them. This is a great resource on using the keto diet for lipedema and this is the Standard of Care for Lipedema in the United States which was published in 2021.

What did I miss!? Fellow Sturdy Women, please use the comments to share any other signs or symptoms of lipedema that you experienced and how you found your way to a path of better health.

I may receive a small commission if you purchase through Amazon links in this post.

Author: Rebekah

Vibrant, creative, thirty-something living life to the fullest with chronic disease.

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