Lifestyle changes with lipedema – do or don’t?

By Tatjana van der Krabben

Here at Lipese we speak of hope and leaving no stone unturned on the road to recovery. This upbeat message isn’t necessarily welcomed. We come across countless reasons to stay clear of lifestyle changes:

- It’s genetic
- It’s progressive
- It’s incurable
- If lifestyle works, my family will blame me all over again for being overweight
- My doctors says low carb and going wheat-free and sugar-free is not proven
- My doctor says birth control with hormones can’t affect my legs
- Exercise hurts

We get it. Of course we do! We, too, are in this boat. Frustrating isn’t it? Having lipedema, getting mixed signals, being told time and again that there’s no research to support claims. Conservative treatment is compression, manual lymphatic drainage and the piece of advice to ‘watch your weight’. Frankly, that’s not a whole lot to go on, especially combined with the ‘lipedema is progressive and incurable’ message. I got this speech as well from my dermatologist when I got diagnosed.

I always get an itch I can’t scratch when I hear the word ‘incurable’. Don’t you? Lots of conditions were incurable at some point. ‘Incurable’ is so negative. How are you supposed to derive any motivation from that? And how does that mean ‘nothing will help’? Many beg to differ.

Lipedema need not be progressive. You could possibly even reverse some of the symptoms. There. I said it. Do I hold the magic ingredients to a potion or something? No. Still, lifestyle changes have stopped the previously experienced progressive nature of lipedema in its tracks for a growing number of patients. It takes searching and tweaking and trying and effort. Lots of effort. But you DO have options.

With people sharing their experiences online through social media, you get an idea of what is driving people. There is no single diet that will work, unfortunately. Women report different triggers for sudden weight gain and/or sore legs, but also variations in the extend in which they cut out grains and carbs. I was asking around which doctors now recommend going wheat-free and sugar-free; giving up both tends to yield results for all involved. I abandoned that idea and this is why. Truthfully, you could still dismiss me for lack of scientific substantiating, for the absence of any and all medical trials, either pro or con for leaving out certain food items or incorporating certain exercise. You could argue that for the lipedema specialists that recommend leaving out certain foods, there are at least as many doctors, if not more, recommending something along the lines of the food pyramid, calorie counting or gastric surgery. It’s all out there and they are all considered to be lipedema specialists. True. But if you’ll indulge me one minute on the soapbox? Just one minute. I promise.

Sugar

Sugar is not really food. It’s a sweetener. You don’t actually need it. More so, it’s unhealthy. Regardless what a doctor specializes in, he or she will not frown upon you for leaving out sugar. There’s nothing wild and crazy about quitting sugar. It won’t lead to nutritional deficiencies. So, if there is a little fiber of hope left in you, after all the dietary disappointments you probably had, that something could work, think sugar. Here’s the actual challenge: don’t substitute the sugar for artificial sweeteners. Unfortunately more and more evidence suggests that’s at least as bad if not worse than sugar.

My minute is up. I’ll get off the soap box as promised. Should you give it a try for a couple of weeks, will you let us know how it went?