Now that lipedema, or lipoedema as it’s called in Europe, is on your radar…how do you know if you have lipedema?
Signs and symptoms of lipedema…
One really good sign that you have lipedema is that you’ve tried to lose weight and just can’t. Now, when I say ‘try’, I’m not talking about ‘trying’ for 2 weeks and deciding it’s too hard, or that diet isn’t for you. I’m talking MONTHS of diligent dieting.
- Eating at a big caloric deficit
- Literally weighing and tracking EVERY GRAM before you put it in your mouth
- Exercising daily to create an even bigger caloric deficit
And none of the above working. Or, you lose a whole bunch of fat in your face, neck, back, chest and maybe stomach but your lower body (save for your feet) and your upper arms don’t budge an inch. If that describes you, you might have lipedema.
Some other signs are:
- Giant or ‘tree trunk’ like legs (they just kind of go up and down in one straight line)
- Upper body is much smaller than the lower body
- Weird fat deposits in your thighs or hips
- Weird bruising on your legs, even though you’re not anemic
- Can’t stand sitting in chairs that have arms that squeeze against your size
- Legs feel super heavy
- Legs swell like they have edema, but your feet don’t
- You’re deficient in Vitamin D
Looking back at the signs and symptoms of my own lipedema…
I can remember being 7 or 8 years old when my mother took me to the children’s hospital in Seattle for being a bigger child than normal. Now, from everything I’ve read and from talking to my dermatologist and the lipedema specialist I’m seeing, it starts presenting itself at puberty. But, I wonder if it started presenting itself even before puberty because at 7 or 8 years, I shouldn’t have been overweight since my mother didn’t over feed me and I wasn’t getting food yet from outside sources.
At around 12 years old I got a horse and was very much into horse showing. I started riding english and had english riding boots, the kind that went up to the knees. When they were ordered, I had to order them at the biggest calf measurement they had for my size and even then, they were a really tight fit. I think it was when I was 14 or 15 years that I had to take my boots to a shoe shop to have the back cut open and expanded because my calves had become much, much bigger. However, there wasn’t a lot of alarm bells going off yet.
At the age of 17 I had my gall bladder taken out (I don’t know why I was having problems at that age, I was slightly overweight but very active) and then I decided to go vegetarian. I gained some weight that looking back, wasn’t lipedema related since it was all over. I lost that weight, but then from age 26 or so my legs started getting bigger. At age 28 I moved from Florida and an intense outdoor job to the Netherlands and a desk job. Between age 28 and 34 I went from about 260lbs to 295 and my legs, upper arms, hips, butt and lower stomach were HUGE.
I looked into weight loss surgery thinking it was how I was eating (I’d been doing weight watchers for years and would always lose a little, maintain then it would creep back up even though I didn’t increase my calories or decrease my exercise) but decided to get a personal trainer instead and count calories. At 295lbs, working out and burning 600-800 calories a day and only eating 1800 calories you’d have thought the weight would have melted off. Well, it did in my face, neck, shoulders and upper back. It didn’t budge anywhere else. I lost about 11kg of regular fat and not a gram more.
I maintained the 270 something pounds for about 2 years when the weight started creeping up again. I started doing keto (very low carb with under 50g of carbs a day) and maintained my weight at 283 until around the end of 2013 when something happened. I suddenly went up to 295lbs (my highest weight ever) and gained an upper belly. I was doing some hard core WTFing about this because I rarely ate over 1800 calories and still went to the gym 3x a week, cycled, and went out on long walks geocaching.
But besides my upper belly blowing up, something else had been happening since around 2010 that I had been dealing with, thinking it was because of my jogging…the tendons on the outer side of my left ankle were chronically inflamed. I had stopped jogging, stopped wearing sneakers, only wore hiking boots and it wasn’t fixing the problem. I went from being able to do 20km walks to today, where I can barely walk 500 meter without complete agony. This whole time the inside of my thighs have been growing with fat deposits, making me walk on the outside of my feet which have been causing all sorts of issues from foot level up to my hips.
So come 2014 could walk a few kilometer before having to stop, I had massively fat inner thighs and an upper stomach. I decided to buckle down and figure out what was going on. I strictly ate 1800 calories, made sure to burn at least 500 calories a day. No weight lost…though I could see my overall shape changing because of the intense lifting that was going on. About the same time that I got the massive upper belly, I lost all strength (pretty distressing when I was doing a 55kg bench press), hair stopped growing, and other issues that pointed to testosterone deficiency.
Ahha! THAT is my problem! I went in, saw specialists, got every blood test under the sun that had to do with my hormones and fat production, went off birth control…by the end of 2014 all my strength was back, my hair was growing, and every single issue I’d been having resolved itself. Except for the weight.
It turned out my birth control was binding my testosterone so utterly completely that I was in testosterone deficiency. But, the weight mystery still wasn’t solved. I can tell you after having every test under the sun done (something like 14 vials of blood taken in 1 sitting), I’m healthy. Very healthy. More healthy than I have any right to be at 295lbs.
So at the beginning of 2015 I did something radical. I went down to about 1200 calories from my normal 1800, exercised to burn at least 600 calories daily (which I did NOT eat back) all while eating a very strict low carb diet of less than 20g of carbs daily. The result? Grams worth of weight loss, though my face lost a little more fat as did my shoulders and back.
Deflated, I went back up to my normal 1800 calories and went on with life until I saw a news article about a woman whom the NHS over in the UK wanted to give a gastric bypass to in order to help her shed about 300 pounds (she was close to 500) and get back into the work force. This woman didn’t want the surgery because she had something called lipoedema and it wouldn’t work for her. Curious, as I’ve never heard of this condition I looked it up. What I saw shocked me.
The first thing I saw on Google Images was the picture from a blog post called Living with Lipedema. The middle picture could have been my legs. Tree trunk, the fat cuff around the ankle, fat deposits starting to hang over my knee. That was me.
This was around April when I discovered this and it wasn’t until I had researched the condition more (and ticked nearly every box there was to tick for stage 2 lipedema) and in July I got the courage to show my husband. I showed him the same picture and he looked at me and said that someone could have taken a picture of my legs and put them on that blog page. That was me, he confirmed.
We went to my huisart (family doctor or GP in the Netherlands) with print outs about lipedema and pictures. My huisart took one look at the picture and then my legs and immediately wrote me a referral to the dermatologist at our city’s hospital.
My dermatologist took one look at my legs and said I was the poster child for lipedema.
Case closed, I was finally diagnoses with lipedema and it was confirmed I could have dieted and exercised until the cows came home. Nothing would change. However, I learned one very valuable thing…….diet and exercise are so, so important and I probably slowed the progression down big time with my persistence all these years. But more about that later in the site.