Lipedema Q&A

This is a long overdue post on how I manage my lipedema – I’ve been inundated via blog, email, facebook and instagram by women who need help and have questions, so it took some time to collect my thoughts. There will be follow-up posts.

Lipedema: this unknown (often referred to as “painful fat disorder”), misunderstood, autoimmune disease, rarely diagnosed. Much like having a “lazy pancreas” with my type 1 diabetes, my lymphatic system is also lazy. It’s pretty important – drains all of the fluid/toxins from my body, and when it’s lazy, it has a whole host of trickle down effects, especially complicating type 1 diabetes.

Much like the constant pressure and fear of potential future complications from living with type 1 diabetes, there is also an added pressure with lipedema to maintain weight and take great care with your legs/infections. Once a person with lipedema is diagnosed (there are stages from 1-5, 5 being most severe), it is extremely important to maintain weight (cue insecurity). If a person does gain weight, although it can be done it is so very difficult to lose because of the fat tissue structure. Have you ever tried to maintain your weight? Have you tried to maintain your weight supplementing insulin with type 1 diabetes? Have you tried maintaining your weight with T1D and lipedema? It’s a party!

Here is how Lipedema has/does affect me (it can vary):

  • Symmetrical water retention in legs, but ankles/feet not affected
  • Painful/tender tissue to the touch (especially if any sugar is consumed)
  • Very easily bruised
  • Puffiness
  • Broken blood vessels/vascular issues
  • Lymphatic fluid retention (in neck, behind knees)
  • Overall feeling of being “clogged” or congested

I am supposed to wear medical grade compression stockings from the ankle all the way to my waist daily, underneath my work clothes. After I was fitted for them and left the office with them on, I took them off and they haven’t moved from where they currently sit – that was two years ago. Not only did I find them extremely itchy, they didn’t breathe and I was hot. In addition, when you need special rubber gloves to get them off and on, it isn’t exactly ideal when trying to go to the restroom. I work up a sweat just trying to get them down. I was also supposed to attend lymphatic drainage massage by a certified lymphatic drainage massage therapist – which, I can appreciate, but 5-6 weeks, for 3-5 times/week. Sorry, couldn’t commit.

So I set out on my own.

Here is how I’ve been managing my lipedema (which can mostly be encompassed by lifestyle changes):

  • Real foods are all I eat. I consider myself Paleo (firmly believe in the foundation of it), but am probably 75% vegetable based (by choice!)
  • I don’t eat soy, (commercial) dairy, corn, legumes (beans and peanuts), grains, very little sugar (the real stuff I mean, as in, fruit), no artificial anything, no soda, no gluten…
  • I do eat lots of fat (ironic no? I have this fat tissue disorder, hmph) vegetables, coconut oil, avocados, smaller amounts of fruit, seafood, eggs, meats, nuts, oils, coconut, extra dark chocolate, some seeds
  • I exercise regularly, and have even increased over the last year. I’m not talking crazy intense cardio sessions as I don’t believe in putting your body under that chronic stress regularly. I do muscle work, pilates, yoga, stretching, and I walk. I walk, and walk, and walk. It is the one thing that I just cannot live without (mentally, too!!!). I also go for long bike rides, hike, and run occasionally. Overall, it’s mainly walking/toning.
  • When I exercise, I wear athletic compression on my calves, and even when I’m just home around the house
  • I place an emphasis on lots of quality sleep – not always easy or doable, but it does wonders  for body and weight
  • I take Epsom salt baths weekly, to draw toxins out
  • I put great lakes grassfed gelatin in my coffee each morning for tissue/joint support
  • I make and drink bone broth regularly (amazing for skin/tissue/gut health)
  • I drink a lot of water/hot tea
  • I skin brush – heard of it? I use a soft bristle brush, and start at the very bottom of my legs, and do 10-15 strokes straight up to the knee, then start on the knee, up to the hip, etc. all the way up to my arms/neck. It removes dead skin cells, but also “wakes up” your nerves and encourages your lymphatic system to start pumping
  • I get a massage almost weekly. It has been really beneficial for me. I get a 90 minute deep tissue, but only deep on arms/shoulders/neck/head, and much lighter pressure on legs. I’ve been working with my same massage therapist for over 2 years, and she knows my body well. She starts at my ankles and lightly pushes the fluid upward to help with drainage. There are times when I am far more tender than I normally am, so I communicate that, and she’ll adjust accordingly
  • I moisturize occasionally, not a big fan, but I try
  • I try not to cross my legs and put pressure on the already compromised vascular system
  • I read, and do a lot of research on the human body, interactions, correlations, food, nutrients, etc.

In a nutshell – that’s how I’m managing my [stage 1] lipedema. I cannot stress how important it has been for me to learn as much as I can. I thought for years I’d been at my ideal weight for my “body type” and that I’d always have “hips” because I was born into that. Not so. Small changes here or there and learning more and trying new things, I went from 145 to 120 (and now you can see my calf muscles/ankles!!!). I wasn’t even trying to lose weight.

So, for all of my lipedema friends without knowledgeable healthcare and feeling alone, I understand. I understand your frustration, concern, pressure and worry, and I am here to answer your questions and help you. I’m not a doctor, but I live it, and this is what has helped me.

Thursday Thoughts

Challenges are gifts that force us to search for a new center of gravity. Don’t fight them. Just find a different way to stand.

Oprah Winfrey, TV personality, producer, and founder of O Magazine