Is lipedema a thing? How can I learn more about it?
February 10, 2014 5:16 PM   Subscribe

I saw this ask comment on lipedema/lipoedema going underdiagnosed while I was searching through the cellulite tag, and I'm interested in more resources, but a lot of what I find seems pretty woo-woo. Get me pointed in the right direction?

I'm a 5'6", 22-year-old female, and the top half of my body is typically a US juniors' XS - but my hips/thighs/knees/calves are always several sizes larger than the rest of me (they're also a wobbling, rippling mess of cellulite, including the "doughy kneecaps" that the OP of the previous thread mentions), no matter how tiny and bony and toned and firm the top half of my body gets. It seems like I'm doing everything "right" - I've been on a low-calorie (I shoot for 1100 on 4 days out of the week, and then 1400 on workout days), high-protein/low-carb, Paleoish diet for years (it's been pretty miserable, really); I'm good about weighing my food; I lift heavy; I'm not taking any medication that causes weight gain (although I am taking CLA for the cellulite); I had my thyroid levels checked (twice); I exfoliate and moisturize my thighs every morning... and I still look like someone grafted the legs of a 40-year-old mother of 3 onto my body. Even when I weighed 115 pounds, it was like this (I've gained about ten pounds in the intervening two years, but my top half looks better that way, so). It's a huge source of stress for me - Christ, I'm crying just writing this.

Needless to say, it would bring me immense peace if I could find out whether or not there's something medical going on there - even just finding a reputable/informed doctor who says "nope, Revs, we ran some tests and it seems like you've just got a particularly pronounced pear shape, so keep dieting". But I'd like to do more reading first, and a lot of what I'm finding is either poorly sourced or of the "ONLY OUR CLINIC CAN SAVE YOU!! DON'T TRUST THE REST OF THE MEDICAL ESTABLISHMENT" variety. please hope me

Oh, and, um, relevant personal anecdotes are fine too. I'll take anything; I'm just hoping that someone can help me figure out what's what here.
posted by revi to Health & Fitness (4 answers total) 9 users marked this as a favorite
What do you do when you work out? When I started jogging, my cellulite disappeared. DISAPPEARED. Like, I am 25 pounds heavier than I was in high school and when I was running regularly I had way less cellulite. (Now that I've stopped, due to snowpocalypse, it's back. Yay.)
posted by goodbyewaffles at 6:11 PM on February 10, 2014

Sister, I feel you. And IANAphysician. Yes, it's a thing, but it's a rare, progressive disease and it's not easily effectively treated. There's only about 80 English-language papers in Medline about the disorder. Unless your legs gradually keep getting bigger, and they bruise more easily than your upper body, it's probably just regular old, frustrating, gynoid fat deposition. (And it can be fought with diet and exercise, but only to a point. Genetics and metabolism will always win in the end.)

Here's abstracts from a couple recent reviews:
Lipedema is a chronic disease of lipid metabolism that results in the symmetrical impairment of fatty tissue distribution and storage combined with the hyperplasia of individual fat cells. Lipedema occurs almost exclusively in women and is usually associated with a family history and characteristic features. It can be diagnosed based on clinical history and physical examination. Lipedema is usually symmetrical, but spares the feet, is often painful to palpation, and is negative for Stemmer's sign. Additionally, lipedema patients can present with microangiopathies and lipomas. The well-known therapies for lipedema include complex decongestive therapy, pneumatic compression, and diet modifications. However, whether these treatments help reduce swelling is debatable. We encountered a case of lipedema that was initially misdiagnosed as lymphedema. The patient's clinical features and history were different from those typical of lymphedema, prompting a diagnosis of lipedema and she was treated with a complex decongestive therapy program.
Shin BW, Sim Y-J, Jeong HJ, Kim GC. 2011. Lipedema, a rare disease. Annals of rehabilitation medicine 35(6): 922-7
Lipoedema is a distinct clinical condition characterized by bilateral, symmetrical enlargement of the buttocks and lower limbs owing to excess deposition of subcutaneous fat. It is found almost exclusively in women. The common features associated with this condition are 'column- shaped' legs with sparing of the feet, bruising, sensitivity to pressure, and orthostatic oedema. The progression to lipo-lymphoedema or morbid obesity is possible. Conservative measures used in the management of lymphoedema can prevent progression/limit the orthostatic oedema. Surgical procedures may also play a part in the management of lipoedema.
Todd M. 2010. Lipoedema: presentation and management. British journal of community nursing 15(4):S10-6

This abstract from a paper in the Journal of the German Society of Dermatology points out some other possibilities and lays out the differential diagnosis:
Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease. It is characterized by disproportional obesity of the extremities, especially in the region of the hip and the legs, hematoma development after minimal trauma, and increased pressure-induced or spontaneous pain. Aids for making the correct diagnosis are (duplex) sonography, the waist-hip index or the waist-height index and lymphoscintigraphy. Important differential diagnoses are constitutional variability of the legs, lipohypertrophy in obesity, edema in immobility, edema in chronic venous insufficiency and rheumatic diseases. The symptom-based therapy of lipedema consists of conservative (compression, manual lymphatic drainage, exercise) and surgical treatments (liposuction). Until now there is no curative therapy. Obesity is an important risk factor for the severity and prognosis of lipedema. Further studies for a better understanding of the pathogenesis of lipedema and in the end possible curative treatments are urgently needed.
Reich-Schupke S, Altmeyer P, Stucker, M. 2013. Thick legs - not always lipedema.
Journal der Deutschen Dermatologischen Gesellschaft 11(3): 225-33 .

posted by gingerest at 6:11 PM on February 10, 2014 [3 favorites]

Talk about timing... I've spent the last 48 hours delving into this condition and attempting to find out more about it, for much the same reasons. And I too hit a lot of highly questionable 'woo' and conflicting information, and am still trying to sort it all out. But I urge you to look up the Lipoedema Ladies, based out of the UK. Their website features an excellent series of interviews with Dr. Karen Herbst, who is currently spear-heading research and treatment here in the States, where there is a marked dearth of knowledge about the condition (Germany and Holland are currently leading research and treatment). I think watching the interviews will answer a bunch of your questions, including addressing how 'rare' the condition is.

Also: in response to goodbyewaffles' comment about running: despite being in the middle-to-low end of my healthy BMI range, a downright bony size 2-4 on top and a perfectly healthy size 6-8 on the bottom, and despite a longtime habit of regularly running, cycling and weightlifting, I still have thick, rather doughy-looking, and often visibly swollen legs. With cellulite up the backs of my thighs and on my ass. Absolutely nothing has ever really changed this, not when I was a size zero, and not when I worked out intensively 6 days/week for almost 2/hrs per day and trained myself into freakishly good fitness. I nevertheless had quite thick, swollen-looking legs, which were always disproportionately bigger than my often emaciated-looking top half. And I'm relatively certain that it's not some weird body dysmorphia on my part: I've been relentlessly and humiliatingly teased about having thick legs and cankles from back when I was a kid right up until present day, with everyone from strangers on the street to boyfriends and bosses, ultrasound techs, sports therapists, podiatrists and my GP commenting on it. So I keep them covered. And I had long since resigned myself to this just being my shape, and embracing it and learning how to dress to flatter my bod (and frankly, that might still be all there is to it: no disease, just a perfectly normal, kinda pear-shaped woman with a bony chest, thick legs that are always swollen, and nice sturdy cankles! In short: every girl's dream bod! But oh well.)

Unfortunately, now my legs have started to physically hurt quite a bit. So I started trying to find out what I could be doing to address the pain and swelling, and what might be causing it, and I ran across lipedema, and this diagnostic questionnaire, and I started to wonder. Because it really seems to fit*. And that's a little frightening. But if you think you might have it, it's certainly in your best interest to do some serious research and take it to your doc to explore, because it's a chronic condition, and you certainly don't want it turning into the latter stages of the disease. I would also recommend reading some of the personal stories of these women so you're semi-braced to deal with the medical dismissal and/or ignorance that you may or may not receive from various doctors and are ready to fight for yourself if you think it's truly warranted.

*but oh, beware letting Dr. Google diagnose you!
posted by involution at 10:13 PM on February 10, 2014 [3 favorites]

Definitely a thing, but the clinical disease entity lipidema appears to be the result of a normal process-- the deposition of fat in the hips thighs and butt under the influence of "female sex hormones"-- which has escaped the negative feedback which would ordinarily limit it and keep it under control, and has run wild.

According to the link [NSFW] in the comment revi alludes to
The cause is unknown, although most people with lipedema have a significant hormonal imbalance.[1] In addition, the times of onset or exacerbation coincide with times of hormonal disturbance, puberty, pregnancy and peri-menopause, so seemingly is hormonal in nature.
And I think that hormonal cause could well be a need for the hormones the lipedemic fat itself produces
It is now widely accepted that white adipose tissue (WAT) secretes a number of peptide hormones, including leptin, several cytokines, adipsin and acylation-stimulating protein (ASP), angiotensinogen, plasminogen activator inhibitor-1 (PAI-1), adiponectin, resistin etc., and also produces steroids hormones. This newly discovered secretory function has shifted our view of WAT, which is no longer considered only an energy storage tissue but a major endocrine organ, at the heart of a complex network influencing energy homeostasis, glucose and lipid metabolism, vascular homeostasis, immune response and even reproduction.
In other words, in order to augment and/or stabilize your hormones, your body can lay down hormone-producing fat on your hips, legs and butt.

And that could be the key to the difficulty (if not impossibility) of eliminating this fat through diet and exercise: it's not there primarily as a store of energy, and therefore cannot be gotten rid of through energy expenditure alone.

If you can't find a doctor you like who deals with lipedema directly, maybe an endocrinologist to look at your hormones could be useful.
posted by jamjam at 2:12 PM on February 12, 2014

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