Will lipedema remain focused on treating symptoms?

By Tatjana van der Krabben

Lipedema is poorly understood. That much we know. We gain, we hurt, we swell and deal with inflammation. That we know, too. New research sometimes allows us to catch a glimpse of what is or could be behind the veil. Best examples I know of at this point is by Szél et al (2014) Pathophysiological dilemmas of lipedema (abstract) and by Bosman et al (pending) Prospective controlled study to determine the use of ultrasound in lipoedema patients compared to obesity, which reveals distinct characteristics in our connective tissue.*

But these glimpses are rare. Extremely rare. Most papers are still about liposuction or what lipedema looks like, including overviews of traditional treatment options. I know you can never get too sure about surgical intervention and within that area of expertise much is being learned still, about treating stage 3 lipedema, differences between types of cannulas and techniques etc. Most useful. Of course.

But still… With liposuction getting most attention and being presented in the media as a cure sometimes or the only effective treatment, a situation of supply and demand is being created, where patients place their money – literally – on liposuction. It’s becoming the thing to do and the thing to want. The next step, which is already becoming apparent, is that treatment becomes about liposuction.

I would like to see it as a tool in a toolbox that, like any toolbox, contains more useful tools with room for more and new tools. New tools, less invasive hopefully, and, dare I hope, even more effective, will not be found unless there’s a supply of data. But before there’s supply, there needs to be demand. We need to voice that demand. We need to be that demand. We need to strive for more insight into causes of lipedema.

There’s still much work to be done in raising awareness. Don’t give up on learning about the cause(s) in this lifetime. Perhaps, as one of the members of Lipese Challenge (Facebook group) suggested, it could be a plan to take matters in our own hands and get new research topics on the table. Why not? Doctors tend to see those in need of diagnosis and at that point barely informed. Once that hurdle is taken and some additional reading and thinking is done, the vital questions start to sink in. Questions we usually only express among ourselves.

I don’t mean to be gloomy, but we are currently at risk to see research regarding causes being skipped altogether in favor of treating symptoms. And nothing but symptoms.  A course of action that happens to so many conditions out there. Finding the needle in the haystack may not be particularly marketable at the short term, but I for one would love to see it found. Because, if you ask me, prevention for generations to come still trumps surgery for damage control.

 

*Feel free to chime in and point out recent groundbreaking research towards causes, which I may have missed. Make my day!

Lipedema and Low Impact Exercise

By Maggie McCarey

     Contrary to popular belief, exercising to lose weight and to stay healthy is not a new idea.  Folks have been promoting exercise since I was a kid six decades ago. President Eisenhower established the President's Council on Youth Fitness on July 16, 1956 with a committee recommendation that all Americans be state mandated to exercise.

      Most of us from 1956 on engaged and continue to engage in physical fitness endeavors. Go Baby Boomers! Unfortunately, America has been on a slow learning curve regarding how much and what kind of exercise is needed to maintain health.  More was always thought to be better. On this curve,   I depended on a ridiculous amount of exercise and starvation to maintain a semblance of normalcy for most of my adult life.  Many of my friends, who don’t have lipedema,  also used over-exercising, particularly running,  to maintain their vast calorie intake and at the same time to remain thin.  All of us, male and female, thin and fat, over the age of 50,  have reached the same conclusion. We have had to relearn, rethink, and rebuild our exercise plans to compensate for our bodies’ aging process.

       Doing lots of exercise is great until your first serious injury occurs or your worn-out knees finally refuse to be abused. Everyone who depends on over-exercising to maintain weight is one twisted ankle away from total collapse of  his/er way of life.  I know. I and most of my friends have been there.  My best skinny friend, ran 5 miles a day for years.  In her mid-50’s, her back wore out.  She had disc surgery and then rotor cuff surgery.  She then moved to low impact swimming and bicycling 20 miles a day in order to eat all of the sugary desserts, pastas, and rolls she wanted.  Her back went out again and her leg with it. Now she can no longer ride her bicycle and she is a Joan Osborn cliche: Just like us because she used exercise to maintain an unhealthy lifestyle until her body gave out. Food intake and exercise are not synonymous. The reason  compulsive exercise is not okay is because you don’t get to the finish line with it…ever…  and then you still have to learn to eat what your body needs.  

     The same day you learn that you have lipedema, you learn there are only two things that medical professionals agree on about lipedema. You learn that you cannot exercise or diet your lipedema fat away and you learn that you must continue to diet and exercise to maintain what health you have. You also learn on every site about lipedema that exercise MUST be low impact. This is logical since our knees are often damaged and worn away from puberty onward with hyper mobility and connective muscle tissue that does not properly protect our joints. 

     So what are low impact exercises?  Generally, they are walking, cycling, rowing, swimming, and elliptical training.  Running is not on the list.  Now to really blow our minds, some exercise gurus are beginning to agree that exercising is fun, if that’s what you like to do, but it doesn’t do much for weight loss beyond a given point. Two experts, British medical doctor Michael Mosley and Australian exercise physiologist and associate professor at University NSWS, Steve Boucher agree that limited, targeted exercise 3 times a week is best. Mosley recommends intensity exercise bursts of 20 second intervals for one minute, three times a week to increase aerobic fitness and ability to process glucose. Boutcher’s clinical trial concludes 20 minutes of intense pedaling on an exercise bike three times a week is the best exercise for good health.  He says:

"Diets do not work in the long term for the great majority of people; the stuff we want to lose is the stuff we can't feel - it's devilish," Boutcher says, “of the insidious visceral fat that surrounds our organs but doesn't always protrude externally as a worrisome girth."

He suggests that removing stress and sleeping better are just as important as exercise and diet in maintaining weight¹.

      Of course, every article I read while researching for this blog suggests that walking at a good clip is the best exercise for everyone. For me, even my walking days are over thanks to my compulsive, high impact exercising, but I still exercise, because when I stopped walking well, I was taught by a physical therapist to exercise every day before I get out of bed.  I target the areas I want to exercise, tighten my muscles for ten seconds in those areas and then release. Belly, thigh, knee, full body presses: tighten and release  You can do leg lifts, stretches, and side rolls.   You can sit at your computer, lean back slightly and exercise your butt and upper legs, ten count, release, and then take a deep slow breath in and out.  You can move any muscle in your body, including your heart to increase cardio-vascular strength via deep breathing and yoga techniques. You just tighten your target muscles the count of 5 and release, repeat 3 times and move on. It gives the same return as regular exercise because these intense bursts release glucose effectively and they aid NO (Nitric Oxide) production and flow, which is nectar for the muscles.

     You don’t need to push body weight down, around and over your muscles to properly exercise them, and now, apparently, this no/low impact exercise also helps you to lose weight. You can gain the same results on low impact and keep your body intact into old age, something I wish I had been told in time.

 

¹) http://www.dailylife.com.au/health-and-fitness/dl-fitness/how-much-exercise-do-you-really-need-20140207-325qw.html