Living the Struggle with Lipedema

All of my life I’ve been a big girl. I come from a family of big girls - my mom and sister, my aunts and cousins, my granny and great-grandma were big girls. I just figured we were a big girl family.  As I’ve gotten older, parts of me have gotten bigger no matter how much I dieted and exercised. My arms and thighs are the worst, particularly my thighs, and more specifically after a recent surgery, my right thigh.  Even after losing 60 pounds last year, my thighs remained the same.

In December 2017 about two weeks before Christmas, I tore my right meniscus sitting in a chair. Seriously. I’ve got no good story to back it up. I was just sitting in my desk chair at work and made the ever so slightest turn and I was in pain and couldn’t walk.

After months of this and that and using crutches, I had surgery on my right knee to repair the meniscus and clean out some arthritis. While all this was going on, I tried to find braces or sleeves to wear for my knee to help with some of the pain. My thighs were so huge and my lower legs a somewhat regular size, I couldn’t find anything to fit.  I’ve always had huge thighs and smaller lower legs but didn’t think anything about it other than that’s how I was.

It wasn’t until during this time that I googled “thick thighs and regular legs” that I came across the term Lipedema. I was floored with what all I was reading. And it definitely explained a lot of stuff to me.

Every time I had labs drawn for doctor appointments they come back normal.  My doctor was always impressed. I remember when the nurses would go through lists of medicines that you would take, I never had any prescriptions for anything and always said “I’m healthy as can be except for being fat!”

So now the journey begins to try and find a doctor who is familiar enough with Lipedema to diagnose me so I can begin the more extensive treatment and use insurance benefits.  I started with my family doctor and all she wanted to do was send me to a bariatric center for a serious diet program. I told her I wasn’t interested because I wasn’t there because of my weight.  I was there to get a diagnosis that would explain these massive thighs that are overflowing my knees.  She was definitely no help at all. I left there completely deflated, aggravated, and now I’m going to be looking for a new family doctor too! 

Sure I’ve got lots of regular fat, but I know a lot of it is Lipedema fat which isn’t easy to lose at all.

In the meantime I’ve already started doing what I can with out of pocket costs. Water aerobics, dry brushing, weekly or semi-weekly messages focusing on my lymphatic system, legs up on the wall, changing the way I eat to cut out as much sugar and carbs as possible, and buying compression wear.

There is no cure for Lipedema but it’s definitely manageable.