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...
- 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!
- 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...
- 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.
- 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.
- 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.
- 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!
- 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).
- 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.
- 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.
- 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. 2022 Update, April 22-24, 2022 is the next conference (in Cleveland OH again, and I’m honored to be one of the presenters this year).
- Lipedema Foundation - is funding basic and translation research at top institutions to define, diagnose and develop treatments for Lipedema.
- 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.