As I go through the journey of trying to keep a normal and active life, I’ve learned there are a few things we should be doing to maintain our legs. My doctor says compression is key. Another thing we can be doing is ensuring the lymph in our systems is able to flow freely. Using a technique called Manual Lymphatic Drainage, therapists or we, ourselves, perform gentle massage which is intended to encourage the natural drainage of the lymph from the tissues space body.
So when I want to share my personal experience, which is a bit concerning. I personally received my first diagnosis of Lymphedema, I went to see a Certified Lymphedema Therapist. This was after several years of trying to figure out what the lumps were in my legs, having MRIs and Xrays (after begging my doctor repeatedly to test), and finally having a bout of tendonitis in my foot. Only after I went to a foot specialist, and then a brace company, did anyone recognize that I had lymphedema. I’d never heard the word. I took this information back to my doctor after researching online, myself, what could be done. She prescribed me to see a CLT. My CLT only treated one leg and only for lymphedema. So she did NOT notice or at least say anything about my having lipedema. So this is where self advocacy comes in. We as the patient, despite having certified therapists, have to know what we have to get the right treatment. I’m telling you this because we must actively tell our providers that we have lipedema. Be strong.
I’ve joined all kinds of social media groups to learn and am seeing the same questions come up, one of which is, “where can I find a therapist to perform MLD?” Here are a few resources.
- The American Lymphedema Framework Project (ALFP) provides a search directory to locate trained specialists in lymphedema management. These therapists are generally trained in lipedema as well and can be very helpful for both diagnosis and treatment.
- Curelipedema.org has a small registry that surely (hopefully) represents a very small subset of therapists who have shared their information on their MLD Directory.
- The Lipedema Project has a Provider Directory online, which shows all kinds of providers, but I see some CLTs (Certified Lymphedema Therapists) on their list.
I have now received MLD training from my therapist, and have had her perform it for me a few times. Additionally, I received a Flexi Touch pump which really can move the fluid. What I like about this is that now that I’ve been trained, I only need to see my therapist for measurements and to get additional exercises, like swimming exercises. I’ll do a post about my experience with the FlexiTouch and swimming exercises separately.
I am opting to have surgery for my Lipedema this year with Dr. Jaime Schwartz. We haven’t discussed it yet, but I believe that I should have MLD pre-surgery to optimize and soften the Lipedema for an easier surgery, and then continue MLD to keep the tissues soft post surgery. More to come on that as I learn what his instructions are for me.
Finally, my CLT taught me to do MLD in the shower, in about five minutes as part of a daily routine. I also personally do it in the bathtub, when I’m soaking in Epsom salts, and definitely when I’m on long flights (yes, I make a trip to the bathroom to really get it good, but I discretely do it in my seat too – it’s not perverse or anything!)
Hopefully, these resources will help you. And if you find any other directories of the therapists, please email me at LegsLikeMine@gmail.com. This whole journey is to help each other.
If you search YouTube for, “Manual Lymphatic Drainage,” there are several videos from a few resources. I am sharing a link to the copyrighted video from the Fat Disorders Research Society, where Molly Nettles discusses and demonstrates MLD, because I know they are 100% a trusted resource. Enjoy! https://www.youtube.com/watch?v=wzcpww0ECHo
