So You Think You Have Lipedema - Now What?

I don't know what the percentage is, but I would imagine it is quite high, where those with Lipedema initially diagnose themselves, because most doctors still don't know what it is (even though it was first diagnosed in 1940 at the Mayo Clinic).

If you are like me, you took to the internet trying to find out why your legs look the way they do, feel the way the do, and why nothing you try seems to help, and you wound up here. So what can I tell you to help point you in the right direction, like I was when I found a wonderful blog back in 2007...

NOW WHAT?

1. Understand YOU ARE NOT ALONE! There are millions of us, and you can find the Lipedema Fitness Facebook support group right here. It is only for those with Lipedema, but there is also a public page for those who do not have Lipedema personally, but work with, or care about someone who does. Knowing you are not alone in all of this is a big deal, it can be a very lonely condition, so seek out support, even if it is not in our group, there are a lot of options on Facebook, find one that speaks to you!
2. Find a Doctor who knows what Lipedema is. Sadly that is easier said than done, I'm still looking, and I was diagnosed in 2007. So if you cannot find a Dr. to diagnose you, then...
3. Find a Trained Physical Therapist (PT). Therapist are one of our greatest resources. Check out this website from LE&RN (Lymphatic Education & Research Network) about finding a trained Lymphedema Therapist. Yep, I said Lymphadema, not Lipedema, because currently there are no training courses for Lipedema PTs. A trained Lymphedema PT can tell you if you have Lipedema (your stage and type), and they can setup a treatment plan.
4. What to Expect at the PT apt. They will take your medical history, and they will ask if it is alright for them to lay hands on you, this is because Lipedema can typically be felt just under the skin, one of the only ways currently to tell - the Lipedema tissue feels like rice, or beans. Don't worry, the PT's touch is super light, because a lot of times (not always) the Lipedema tissue is painful to the touch. The PT will also talk to you about treatment.
5. What are the Treatments? CDT (complete decongestive therapy), which includes MLD (manual lymphatic drainage) massage, wrapping with bandages or special garments, eventually being fitted for graduated compression, exercises that can help move your lymph (something that gets compromised in later stages), and how to care for your skin.
6. What about Self Treatment? Self care is critical, especially if you are not very mobile, we do a lot to try to keep our condition from advancing. Some of the things we can do is learn how to do self MLD (something a trained PT can show you, and you can also find videos on YouTube),  Keep your skin moisturized, dry brushing, and wear compression (this is one of the most important things I do every single day). I have worn Juzo Dynamic 30-40 grade knee highs since being diagnosed in 2007, and I am honored to be a Juzo Brand Ambassador. I had the absolute privilege to visit their headquarters last month, met their caring and talented employees, and I learned so much about what goes into their products (every stitch is important to them), and I could see just how much they care about those who wear their products. I highly recommend Juzo's website, they have great information about all their products there, and other resources like  where to find a trained compression fitter, and their Steps To Better Health blog, click the link below to read the collaborative approach blog that Dr. Gallagher and I worked on...

   

   Thank you Juzo!

7. What exercises are best? Aqua fitness is probably one of the best things you can do, aqua jogging or aqua aerobics are excellent options, the water acts like graduated compression, and it supports our bodies. Walking and biking are great, they both pump our lymph system, as does rebounding (bouncing on a mini trampoline). Yoga and Pilates are wonderful, and I also find body weight training is really good to get our core strong. I started training with my husband in CrossFit workouts six years ago, and it really saved my life. At the time I began training I could barely stand, let alone walk, almost completely immobile. CrossFit helped me regain all my mobility and strength, and I feel really slowed down my progression. Finding what you love is the best exercise, something you can do regularly, even kitchen dancing (one of my favorites).
8. What else can you do? Vibration machines are great for reducing pain, and helping to move your lymph system, and they come in all price ranges now. Even if you cannot stand on one, you can sit on a chair and put your feet on the vibration plate. Rebounding can also be done on a large yoga ball instead of a mini trampoline, sitting on a stabilized yoga ball and just bouncing  gently up and down really helps move the lymph system. Dr. Melissa Gallagher has a wonderful YouTube Channel, (Here is a great video of hers about Yoga ball rebounding) she is simply fantastic, and has tons of videos and information, I highly recommend following her. She is Atlanta's premier Lipedema and Lymphedema specialist. Eating styles can play a big role in how we feel, some like an Anti-inflammatory way of eating, others prefer KETO (ketogenic, or low carb high fat) way of eating, some are plant based, others stop gluten and sugar. I started with Zone (specific amounts of fats, proteins and carbs based on your body weight and activity level), then we transitioned into a lower carb level and most recently have begun fasting - I feel better this way, but it may not be right for you. The key is to find a way of eating you can stick to, as you cannot diet or exercise away Lipedema tissue, it doesn't respond the same as regular fat. WAL (or water assisted lymph sparing liposuction) is also an option; I have not personally gone that route, but there is a lot of information about it online, my only suggestion, do you research and make sure your surgeon is trained in Lipedema, or they could make your condition worse.
9. What about the pain? Pain is something we all seem to experience differently, you might not have any, or you might suffer a great deal of pain because of Lipedema. MLD can go a long way in helping with the pain, as does Vibration, Rebounding, and things like CBD and T-Relief gel, supplements, etc. These are all very personal, and things you can research with your PT. 
10. One last thing. Over the years we have learned that while we all might have Lipedema, we will all present differently, and respond differently to treatments. So we have to do lots of trial and error to see what works for us. My best advice is keep a journal, you will try lots of things, and you can track their progress in one location. Keep your measurements from the PT there, and any other items you want to track. Bring that book with you to doctor and PT appointments. 

OTHER EXCELLENT RESOURCES:

• FDRS (Fat Disorders Resource Society) - Dr. Karen Herbst has been one of the most important figures in the advancement of Lipedema, I highly recommend attending one of their annual conferences, the next one will be April 17-19, 2020 in Cleveland. 2024 Update, April 19-21, 2024 is the next conference (in St. Louis, USA).
• Lipedema Foundation - The Lipedema Foundation supports collaborative research that addresses the basic biology, genetics, and epidemiology of Lipedema. They have a brochure for patients and one for clinicians - great resources to give to your medical team or upload to your patient portal.
• 2022 Update: The Standard of Care for Lipedema USA recently was published. Great info for you as a patient, and great to print and bring with you on dr. Apt. Or upload to your patient portal! 

Can an Orbital Buffer Really Help My Lipedema?

Did you know athletes have been using car buffers (like this Black and Decker WP900) as a massage tool for years?

I didn’t until a few days ago - when I thankfully learned about it from the Living with Lipedema: Stages 3 & 4 Facebook support group I belong to. 

Another example of how important support groups are, and how important those that share what they are trying are, even something as "crazy" as this idea can be helpful to many. Keep sharing!!!

Athletes are using these buffers to help recover after a hard workout, it feels really good to ease a tired muscle, but massaging muscles post workout can also decrease inflammation caused by the workout, and thus your muscles recover faster.

Another reason they use these massagers is because they help to break up fibrosis.

Fibrosis is a big concern with Lipedema, too, and anti-fibrotic treatments, such as a handheld massager like this, can be used to break up that fibrotic tissue.

As Lipedema progresses, we develop Lymphedema, and chronic inflammation causes fibrosis.

Anti-fibrotic treatments include deep tissue massage. Which can be done by a trained Physical Therapist, or at home with tools like a foam roller, rolling pin, tiger tail, or even a hard lacrosse ball, that you can roll between you and a wall/floor to really target a specific area - or even, it seems, an orbital buffer). 

With all things, you have to seek out what is best for you. Do your research and see what others have tried, and what is available in your area.

The best place to start is with a trained Physical Therapist, someone who knows about Lipedema and can assist you with various treatments. But as you might have learned it is not always easy to find someone knowledgeable in your area, or able to afford continual treatments, especially if our insurance doesn't cover them, so like with everything else, we usually have to find self care options we can do at home, and this is one I'll be trying.

Check out this article for a wealth of information on "Understanding Fibrosis in Lipedema" by Karen Ashforth.

Saturday WOD in the Park - SLEDGE HAMMER TIME

Regular warmup

(3 rounds of 10 each):

Sit-ups

Push-ups

Pull-ups

Squats

Good Mornings 

Samson Stretch

Followed by flipping and dragging a 300lb. tractor tire up and down the park, and swinging sledge hammers into said tires. 

Coach taught us a new swing - a sideways version (like swinging a baseball bat at a ball, but instead we swung it at the side of the tire, where the tread is). 

We also did overhead swings (where we bring the hammer down from above on to the part of the tire facing up as it lays on the ground), and we practiced technique. Trust me, you don't want to have the hammer bounce off the tire and hit your foot - ouch!

I love strength training workouts like this; They make me feel like a warrior, like I'm fighting back, and they make me feel so strong!

That action, that fighting back, it helps emotionally, too. Working out is us fighting back against Lipedema, trying to stay as active as possible, for as long as possible. That action is so healing emotionally, letting us know we are NOT victims of our condition!

You know what else I love?     Looking at this photo of myself!

That might sound weird, my inner voice is singing "You're so vain, you probably think this post is about you", but it shows all of me, my lipedema legs and arms, and it shows me that I am strong.

When we first started training in the park, I would seek out big trees to workout (hide) in front of, then after we had done so many workouts there I forgot to seek out "shelter", and eventually I didn't just forget about it because I was so into the workout, I wanted my community to see me doing the workouts

That is real change, and I am so thankful to all the body positive folks that have shared their lives with us online and in our own communities.

Together we change the world!