Lipedema: An Illuminating Diagnosis

Zuckerberg has me nailed. He knows that I will stay on Facebook for an hour if he puts dance videos in front of me. That man is NOT my favorite billionaire, but he sure knows how to tickle my pickle. 😉 Turns out, he has an uncanny ability to diagnose disease, as well! Who knew?!

One of the 5 million dance videos he lured me into watching was this brilliant dancer that goes by Allison Jacobsss. Allison is larger-than-life in the personality department and she swings her hips around with reckless abandon when she dances. It’s so joyful. And, as someone who loves to dance myself, I was incredibly inspired by a woman who was shaped like me putting herself out into the world so bravely!

You see, Allison and me, we are fluffy in all the same ways; In all the same places. It’s not a typical fat pattern. So, when she shared that she had received the diagnosis of a common, under-recognized connective tissue/fat storage disease called Lipedema, I was intrigued! Not *just* because of my own selfish reasons, but also because I am a functional medicine doctor… how had I not heard of this condition?!

Alison got treatment for her Lipedema by one of the few specialists in the USA. I scheduled a consultation with that specialist because I have been at a ridiculously stubborn stand still with my health recovery process and if this is part of the reason, I needed to dig in. As I expected, I was diagnosed with stage 2-3 Lipedema in May 2024. I’ll be sharing more about this later, but for now, I want you to know about this condition! It’s so common that it may be part of your struggle, too!

What Does Lipedema Look Like?

Physically, what often starts as thick thighs that will not go away with weight-loss and fitness techniques, becomes more nodular-looking fat that disproportionately accumulates in your proximal limbs- your upper arms and thighs. Eventually, due to the fat-induced hormonal changes, and the gravitational weight of the edema created by this disease, it spreads to your calves, forearms, and abdomen.

What is Lipedema?

Lipedema is a connective tissue condition that almost exclusively affects women. It occurs when genetics, hormones, and other lifestyle factors combine to change the make-up of your fat cells, called adipocytes.

Lipedema fat cells have unique biological composition, including the majorly problematic fibrous overgrowth in the connective tissue surrounding each fat cell. These fibrous shells trap the fat cell, making the fat impossible to lose.

The fibers from one fat cell also like to intertwine with the fibers that are coating the neighboring fat cells, which creates a locking together and dimpling of your fat, but also a tethering of the tissues all around it, including the delicate channels of the lymphatic and venous vessels. When the vein and lymph channels are blocked by fibrous overgrowth, it creates a backlog of fluid, both toxin/waste fluid from the lymphatic drainage that isn’t happening, and blood pooling in your veins and capillaries.

The hormonal effects of the fat cells creates significant slowing of your metabolism, thus creating more fat cells to become diseased- perpetuating the condition. This happens symmetrically in the extremities (unlike its extremity-edema cousin, lymphedema) and spares the hands and feet (unlike actual obesity.)

What are the symptoms of Lipedema?

Trust me, living with Lipedema is SO much more than just looking "fatter" than what you have fairly earned with your lifestyle.

These are only a few of the life-impacting symptoms that I have personally experienced:

Pain. I had no idea that it wasn’t normal for it to be excruciating to have a baby or pet stand on your lap! For real? That doesn’t kill everyone? How about a blood pressure cuff? The worst, right? Someone grabbing at my arm or leg? Cruelty. But I am one of the lucky ones. Some lipedema sufferers have 24/7 pain without any contact. I cannot imagine!
Lack of mobility. Beyond the lessened mobility of being a larger person, the traffic jam of lymph creates edema surrounding the joints (not IN the joints) so things like squatting will instantly block blood flow and nerve conduction creating a “OMG, my feet are asleep!” experience after mere seconds, as well as just generally restricting range of motion like how far you can bend at the knees and elbows. Child’s pose? Hahaha! Naw, man. My ass is straight in the air!
Loss of balance and coordination. The edema created by this disease lessens the ability of your proprioceptive nerves to give your brain feedback of where your body is in space. This can create a building up of discoordination and balance issues that get worse with the progression of the disease. Dude, I gotta tell you that this was a bit of a relief for me. I thought my cerebellum was being destroyed. The cerebellum is a part of the brain that is responsible for balance and coordination. Your immune system can simultaneously attack your cerebellum when it attacks your thyroid, so as a 30 year autoimmune thyroid sufferer, I was pretty sure my immune system was killing my brain. This lipedema thing is 100% better news. But I still ain’t down with letting this continue because I will be one of those old ladies that falls all the time, breaks shit, and dies early, if I can’t get this proprioception under control. It’s pretty bad, y’all. Scary bad, to be honest.
Inability to detox well & sensitivity to everything. There’s hog-wild fibrous growth around your fat cells and it blocks drainage of fluid, including your lymphatic fluid from your extremities, which brings waste products from your limbs to your core for processing. When the lymph channels are blocked, you can’t clear the waste and your body burden builds and builds. I don’t think this is the only reason a person can be sensitive to EVERYTHING like I am (including lotions, make up, deodorant, metals, chemicals, and even most frickin’ underwear seams! I mean, come on!) but the higher your body’s burden of waste and toxins, the more your immune system is on high alert to all things bad AND good. (Good being your own healthy tissue, in the case of autoimmunity.)
Varicose veins and spider veins. Just like lymph vessels, your veins do not have pumps to bring the blood back to your core. Veins depend upon your body movement to coax the blood back up to get re-oxygenated. But if there are the fibrous fat cells blocking the way, the veins are facing an uphill battle (literally and figuratively) on moving your blood in the right direction. When it’s losing that battle? Spider Veins and Varicose Veins, oh my! For me, spider veins started in elementary. I remember a friend sitting next to me in the car asked why I have roadmaps on my legs. Spider veins at the first glimpse of puberty, baby. It’s been real.
Easy Bruising. The pressure on the veins in your extremities creates easy vein injury, leading to bruising of all kinds. There’s the spontaneous vein burst leaving you with a monster bruise out of nowhere. There’s the “Dang it! I bumped that chair!” That’s gonna leave a mark!” And, there’s the painful little “I just broke a vein in my hand by tapping the ketchup bottle on my palm.” There is really no end to the purple and blue adventures.
Hormone Issues. Lipedema fat is fat you cannot lose. It is trapped. Fat cells are estrogen producing cells. When you have too much estrogen, it is all by itself, systemically inflammatory. Estrogen also negatively affects how your thyroid hormone is metabolized, burdens your liver, and affects how you break down some neurotransmitters- all creating a landslide of seemingly unrelated symptoms. Plus, too much Estrogen (of the bad kind) can increase your risk for certain cancers. No bueno for your all around health in countless ways!

This is not an exhaustive list of symptoms & experiences. These are just the ones I have experienced personally and can make trauma jokes about. (It's part of my chronic health shit coping mechanism. Sorry, not sorry.)

Many women with Lipedema bear the burden of eating disorders and mental health issues from the societal pressures that they endlessly tried to meet, but could not ever achieve. This often becomes a part of their adolescent story about themselves that sticks around for decades. That’s one reason why diagnosis is important. So you can give yourself some frickin' grace!

It wouldn’t surprise me a bit if there were someday a connection between lipedema and higher incidence of autoimmunity, as autoimmunity is your body turning on itself & that’s the way a lot of lipedema sufferers feel- like their body betrays them. Your body keeps the score on these mistaken beliefs you have about yourself and disease may manifest, in part, because of them.

The only other thing I MUST mention is that the backlog of fluids, especially in the veins, makes a Lipedema sufferer more likely to have Deep Vein Thrombosis (DVT) which is very-much-so life threatening. This is why awareness of Lipedema, and its further research is important beyond just quality of life. We are talking about the quantity of life here, too.

Okay, so now that I softened you up a bit with my little rays of Lipedema sunshine, let me share what it can actually look like in different stages of the disease. As in… not a cartoon, but real pictures. Just not MY pictures. I am not as brave as Ms. Allison, the dancer, is. I’ve lived my life wearing full-length jeans in 100+ degree Sacramento summers, so we aren’t even close to sharing full leg pics over here, folks. These pictures are from the Lipedema Foundation’s educational brochure.

How do you treat Lipedema?

Well, here I go with more little rays of Lipedema sunshine. At this time, there’s really not a cure outside of a surgery to remove the diseased fat cells and fibrous adhesions. This isn’t a well-known (in the USA) or well-studied disease.

The consultation I had about the surgery, just so I knew all my options, left me with very little actionable steps, aside from the recommendation of a keto diet (half-heartedly) and the surgery itself. Scope out the shitty sitch on the surgery though! It is more and more being covered by insurances, but a person has to have a PPO and therefore will have partial coverage and a huge deductible to pay on the surgery. Not only that, but almost all insurances require you to pay up front and submit a superbill. The approximate up front cost for the 3 surgeries required? A mere $100,000. To get the only real known treatment- $100K out of pocket. Totally common to have that kind of savings in our 2-tiered economic existence. I mean, even if you had that kind of money, you’re just praying for reimbursement from insurance companies who are 100% tasked with finding ways to deny you, I guess? Good Lord.

So, as I scour all the support sites, I see a few doctors and practitioners working on movement, lifestyle, and herbal recommendations, but the consensus is that you just need the surgery. Even if I could afford it and hadn’t spent our life savings on mold remediation and subsequent health recovery efforts, I would still be TOTALLY SPRUNG on “Functional Medicine-ing” this condition to the best of my ability because treatment shouldn’t be reserved for the wealthy. There has to be another way. And, I get to be a guinea pig! My favorite role!

My Lipedema Goal

So here’s my goal: Hit it with everything I got, without concern about what action impacted it most. Discernment in the effectiveness in each measure can come AFTER I prove it CAN be treated with something other than the current standard of care- surgery. So again, prove it’s possible for me, then gather other willing & excited guinea pigs who don’t have $100K for surgery and tease out which methods are most effective! Sounds fun, right?

Stage 1: Now that I know it’s a fibrous process, I am going to take action on breaking down the aberrant fibrosity. I’ve done this before with other fibrous conditions, so that’s a low hanging fruit that would be good to start early to unclog the highways. But as those highways open up, my body is going to have decades of toxins to process. I will need to have my liver, my skin, my sweat, and my kidney prepared for the job. I will be participating in my biannual program, RENEWAL, which is a 6-week gut and brain barrier sealin’, liver detoxin’, diet cleanin’, lymph movin’ good time. I’m just going to lay it on REAL THICK with the lymphatic drainage and see what we can do! I would like to take you along for the process, if you would like to follow my journey here? Or maybe you even want to join me in RENEWAL?

Stage 2: I am going to spend the winter studying up on Lipedema and trying to figure out how all the systems are functioning together, or are dysfunctional together, with this disease. I should be able to add a depth of care to the Stage 1 actions that will be more aimed at unwinding vicious cycles happening within the biochemistry.

And, of course, I will be trying all kinds of tools and techniques along the way. I like doing that. SOME people have normal hobbies. 🤓

I’ll be making my game-plan for the next 6 weeks of RENEWAL next and I will link it here once it’s live!