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.

11 thoughts on “Lipedema Q&A

  1. Thank you so much for sharing! I’d really like to know how you were diagnosed with lipedema. I’m a type 1 diabetic, and I feel like my body is trying to tell me something (sleep issues, unexplained weight gain, abdominal pain). I’ve tried discussing the problems with my Endo, but they only want to focus on my diabetes and thyroid. I think something bigger may be wrong, but I can’t get my various specialists to look at the bigger picture. How were you diagnosed? I’ve considered trying paleo to see if it helps with my symptoms, but I would like to know what is wrong with me first 🙂

    Thanks!

  2. Pingback: Lipedema management – by Linds! | Lipedema Simplified BLOG

  3. Thanks Linds, I shared on my BLOG – I have found many of the same things work for me, though I am much older and late stage 2, with lipo-lymphedema. So enheartening to have more available for women on the internet.

  4. Hey! Thanks for posting these blogs, I have lipoedema myself and it’s really inspiring and comforting to know that there are others with it who can happily and healthily get on with their lives. I just have a question though, as I thought lipoedema had no cure, so how is it that your legs are more toned and less big than before? They look great by the way, I wouldn’t even be able to guess you had lipoedema

    • Hi Sarah! Ask away, I’m an open book 🙂 I want to preface this by telling you I am not a doctor by any means, these are my experiences with what has worked. To my knowledge there isn’t a “medical cure” today…I have made drastic lifestyle changes, and I didn’t see much of a change until I hit the 2 year mark…and then it finally continued to just change appearance/tone, etc. I was diagnosed as stage 1, although I’ve know after talking with Dr. Herbst that I’ve had it roughly since I was 9. It makes sense now, after having learned so much about the disorder. Some have questioned that I have possibly put it into remission…possibly? I don’t know if that’s even an option, but maybe? Haven’t seen a doctor for it since Dr. Herbst moved to AZ. I should email her about it, ha! Thank you for your kind words. Hugs to you!

  5. Hey Linds!
    A big shout out to you!
    I felt hopeless until I chanced upon your blog. Your story gives me hope and I feel better. Thanks for sharing!
    Here are some questions, perhaps you could help me:
    1. Before you made drastic changes to your lifestyle, were your thighs wobbly, could you see dimpled textures on pressing your thighs.
    2. How often you do yoga/pilates and how much time you spend per session?
    3. What kind of muscle work do you do, could you elaborate a bit?
    4. Do you walk everyday?
    I am trying to figure if all these have to be done everyday or 2-3 times per week suffices.
    5. I am a vegetarian, is there any good source of proteins which could substitute meats, eggs, etc.

    Sorry if there are too many questions or even silly questions. I just needed to ask them to someone who could help. Your answers will be of great help to me.

    Thanks a lot,
    R

    • Hi R! Thanks for all of your questions and reaching out! Sorry to hear that you were feeling hopeless, I can relate, hugs! Here are my answers: 1) Maybe a little bit by pressing on them? I honestly don’t remember, I just remember they had a different text, like more cellulite/dimply, which I can still get now if I push in certain areas but have become a lot more lean so maybe that’s why I don’t notice it as much now. Not sure what you mean by wobbly? 2) I don’t do yoga very often, rarely actually, and haven’t done a dedicated pilates workout per say for some time, however I do regular muscle work that often incorporates what pilates does! I do that about 3 times per week dedicated, and then if I need a break from my desk, I’ll get up and do some core/muscle exercise for 10-15 minutes. What people don’t realize is that it doesn’t take hours long workouts and regular cardio to strengthen, tone and lean! For me that added stress to my body just wasn’t good. For the muscle work, I do planks, leg exercises (squats/lunges/kicks/lifts), arms (using wrist weights/tricep wall pushups), ab work. 4) Just about! It helps keep my mind at ease when I walk. In San Diego it was a lot easier to make that happen almost every day, Minnesota has been a little bit more challenging, but still, I get out regularly! It isn’t so much of a chore to make happen but more of a habit and I need it for my mental health! Plus the added benefit helps me manage my diabetes. 5) Hmmm, I’m about as opposite of vegetarian as you can get…but vegetables have protein! Especially the leafy greens. If you eat Beans/Legumes, they have protein? If you eat soy/tofu, that has protein? Do you consume seafood at all? Cheese, although that can be inflammatory for some.

      Let me know if you have additional questions, happy to help! You can always email me too at livinglikelinds@gmail.com.
      Linds

  6. How did the Dr. determine you had Stage 1. Was it a certain blood test? Thank you for your help. Dr.’s think I am crazy when I try to tell them my symptoms and tell me it’s the aging process.

    • Hi mm. She’s a lymphatic and fat disorder researcher/specialist, endo by trade, she knew after examining me I had stage 1. Some of it is the look of my legs, and then other exam tests she did. No blood test.

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