June 2019

Lipedema Awareness & Treatment: A Collaborative Approach

Pattie Cornute & Dr. Melissa Gallagher

During Lipedema Awareness month, we hope to help raise awareness of the disease and ways to manage it. Who better to help in that effort than someone living with Lipedema and a Lymphatic Therapist? Pattie Cornute, blogger and Lipedema Fitness founder, along with Naturopathic Physician Dr. Melissa Gallagher share their input on the disease, as well as how to get the most out of the patient-therapist relationship.

What is your primary role as a Lymphatic Therapist?
Dr. Melissa: I coach Lipedema patients ways to minimize inflammation of their adipose tissue and motivate thee lymphatics that cause fluid excesses in their body. I discuss factors like lifestyle, exercise and diet as tools to manage pain and reduce inflammation and swelling, as much as is “DIY” possible. I also fit my patients for compression wraps and garments that help minimize the progression of lipo-lymphedema. I wear a lot of hats as a therapist. Sometimes I am a shoulder for them to cry out their frustrations and anger regarding their situation. Other times, I’m an encouraging voice, supporting and guiding them through the maze of uncertainty and misinformation that plagues the patient world of Lipedema.

What are some benefits of working with a therapist?
Pattie: For me, finding a therapist was life changing. They were the first to diagnose my condition of primary Lipedema. Since I was diagnosed so late into my condition, they also diagnosed me with secondary Lymphedema. In my experience, they have been the most knowledgeable and helpful resource in the medical field. I have yet to find a primary care doctor locally who knows about Lipedema.

Dr. Melissa: One of most powerful benefits of a patient-therapist relationship is that you have someone in your corner who totally gets you, your situation and has clinical expertise to recognize that this condition is progressive, understands its origins and is not going to judge you or make your feel less than. I cannot tell you how many patients come to me with horror stories of clueless and tactless medical providers who told them to just lose weight or referred them for bariatric surgery. These providers are not solutions-oriented and their approach is heartless. For patients to truly heal in any capacity, they need a safe environment that is free from judgment and ego. My patient relationships are centered in compassion and understanding. I love my patients and get to know them each on deep levels. That bond is so rewarding. I am encouraged by their success. If they have regressions (major life stressor, surgery, illness, cellulitis, etc.), I enjoy being a sound resource to help them get back to balance and on track.

What should a patient expect from their therapy sessions?
Pattie: Physical therapists are kind, supportive, understanding and most importantly, knowledgeable of how to help you feel better. That can come as a real shock after years of doctors not knowing what is going on with your body, and assuming you need to “just lose weight.”

Dr. Melissa: My appointments are a bit more unique than a typical lymphatic drainage treatment/compression wrapping session. First, we’ll have an in-depth discussion about health history, early signs of Lipedema, current lifestyle, daily diet review, exercise and medication intake. The next phase is a thorough body assessment of skin, tissue and areas of fluid retention. If the patient does not wear compression, I will take measurements and fit them for compression on day one. Together, we craft a workable daily DIY schedule for managing their Lipedema. I offer an assortment of resources and recommendations so my patients walk away with a plan of attack that they can easily and immediately implement according to their lifestyle, budget and commitment level. For some patients, we have to take small baby steps; others start at a running pace.

What is something you've learned from your therapist that you wish you'd know earlier?
Pattie: My therapist taught me what lipedema is and how to treat it. If I would have been properly diagnosed earlier, I could have taken steps to help my body from progressing into later stages, like I am now. I love Dr. Melissa’s natural approach; she is so knowledgeable and caring, with years of experience working with Lymphedema and Lipedema patients. I highly recommend her YouTube channel. It is a wealth of information. She has a great video about the best supplements for Lipedema and others on compression, wrapping and materials she uses to help patients treat their fibrotic tissue.

What suggestions for you have for patients trying to manage their Lipedema?
Pattie: Compression is the most helpful product in managing my condition, specifically, graduated compression. Staying active is key to keeping my mobility, and I cannot do what I do physically without wearing my compression. I also use a vibration machine every morning, which has really helped with the pain, and even purchased a second, more travel-friendly one, to bring on trips – what a difference that makes. Travel can be really hard on our limbs; being compressed, especially for air travel, is key.

Dr. Melissa: One of the most impactful things I can recommend to a Lipedema patient is to encourage a mindset shift. This is a PERMANENT diagnosis. It’s not going to change, go away or disappear. And as such, you cannot ignore it or run from it. It’s a daily requirement that you do certain things to keep the swelling at bay, lower pain levels and reduce the acceleration of adipose tissue development. I have three key tips for every Lipedema patient:

  1. Take Lymph Stim daily. This homeopathic lymphatic motivator and inflammation reducer is mission critical to help decongest and flush excess fluid within your lymphatics. Homeopathics are a great way for you to add in some umph to your daily lymphatic movement and Lymph Stim is a game changer. While Lipedema is primarily a fat tissue disorder, it involves the lymphatic system and a big part of what you are managing is lymph fluid accumulation. Learn more online (and get a 10% discount).
  2. Compression therapy is a MUST and a non-negotiable—think of it as your second skin. Quality matters in this category, as does the strength of compression. The compression you wear is a big variable for the success of compression therapy. Buying sub-par compression can have a reverse effect. I see this weekly—folks buy poorly fitting compression, and this can be detrimental to managing Lipedema. I fit a lot of my patients in Juzo and often recommend wraps and will incorporate Soft Compress pads and TheraPad for the pesky fibrotic areas that often occur around the ankle, flanks and outer thighs. You can get inventive and think outside the box with compression if you find you have fit challenges. I recommend SoftCompress and TheraPad underneath compression wraps and even for use at night under the body and areas that might not be compressed. The beauty of compression when sleeping is that you get an extra factor of compression, which is your own body weight.
  3. Dry skin brushing and rebounding daily go hand in hand. I recommend dry skin brushing then rebounding. Add this to your morning or evening routine (it’s only a 10-15 minute commitment). Rebounding is a great way to both open up and flush your lymphatics and get in some good cardio (10 minutes of rebounding is the equivalent of a 50-minute run). Who knew jumping on a mini trampoline and harnessing your inner child would be so amazingly beneficial?!? Watch my rebounding tutorials and download freebie my Dry Skin Brushing Guide.

What are some ways you're helping to raise awareness of Lipedema?
Pattie: In 2013, I wrote a Letter to the Editor for my local paper about Lipedema, trying to spread awareness. I didn’t want one person to go through what I went through. I wanted to shout it from the rooftops! But they did not respond to my letter, or publish anything about Lipedema. Instead of feeling defeated, I took to the Internet and started a blog. That Letter to the Editor became my first blog post and the beginning of Lipedema Fitness. Now I have a website, public and support group Facebook pages, an Instagram account a YouTube channel, and I’m working on Twitter and LinkedIn accounts, too—all to raise awareness. And, this year I finally got my local Lipedema article! Healthy Saratoga published an article about my journey (page 83) and the upcoming Annual Lipedema Triathlon, which is one of the things I’m more proud of creating. Our fourth annual tri is June 29. The virtual side has really taken off; we have people signed up from NH, MO, NC, and even Australia and the Isle of Man! How cool is that?! I’ll keep looking for new ways to get the word out, and hope others do, too.

Dr. Melissa: I am super impassioned about Lipedema education. This condition impacts more than 11 percent of our population, and I see people daily who are walking around clueless that they have Lipedema. They think they just have thicker than normal legs, painful limbs are just a part of aging and that they should just try harder to lose weight. There is such a void for patient and clinical education and this is one of my core areas of focus: outreach and education. Through my work on my social channels, educational webinars and speaking engagements, I am hoping to make a dent in the world of Lipedema awareness Partnering with awesome, inspiring and socially influential patients like Pattie and companies like Juzo are a priority on my list of outreach.

Cori commented on Jul 14, 2019

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Has CBD oil been tried or used and found to be beneficial?

Gainor Hillegass commented on Jun 27, 2019

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I forgot to tell you that O used Juzo post surgical and compression stockings and they are great. Stockings are too painful now, so relying on the new leg garments when they come and my own tights/spandex leggings/compression machine, diuretics, diet changes/nutritional supplements. I read that Serrapeptase is beneficial in breaking up the thickened proteins, so will be trying that.

Gainor Hillegass commented on Jun 27, 2019

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Thank you Melissa and Pattie for sharing this information. I am 74 and have am in treatment for the second time in 3 years for lymphedema, now also lipidema. In the intervening time, I had 2 greater saphenous veins closed, and replacement of left hip and both knees. I was doing much better, then awoke 12/31/18 with a sudden event which swelled my body, made me feel very ill, and added 25 pounds rapidly. I felt poisoned! Both ears were even full of fluid. I saw all my specialists, had many tests and a trip to ER in the past 6 months. All said I was healthy! I am hypo thyroid/adrenal insufficient, and take replacement hormones daily. I take prednisone, so I think I crashed while weaning down from holiday dosing. In my return to therapy, I learned I am beyond compression stockings now and require garments for the legs. I use my compression machine, watch my diet better, but cannot exercise much due to arm/leg neuropathy, back problems. I use 2 canes and a rollator walker to get around. I lost and regained weight daily, until I used combinations of things simultaneously. Now steady at 13 pounds gone of the 25 pounds I put on by wearing leggings with mild compression day and night. I take Lasix with potassium for the excess water, compression machine boots up to hips once/day. I avoid extra salt and sugar. It took 6 months of my own research to get a handle on this. My daughter sent me this link and others of yours, Melissa. I learned a LOT from watching your videos. Keep up the good work and Pattie, keep raising awareness. We need it badly. I hope to get natural with keeping fluids down, breaking up thickened proteins and fat in the tissues. As for fluid in abdominal tissues, I found sport spandex shirts on Eastbay.com that surround the trunk with mild compression, along with the spandex leggings. I am awating my leg graduated compression garments. I do lymphatic clearance with the brush while on compression machine and Lasix to maximize moving the fluid along. I am going to start pool walking and swimming soon. I will keep learning more as I go along. My therapist has been a fountain of knowledge, and I look forward to working with her. I restarted last week. this is permanent, but can be managed. I am finally hopeful after months of desperation. I have a good talk therapist who has helped me negotiate the mindset of living in disability. I am grateful for my faith and spirituality to get me through the dead ends that force me to surrender and work with what I have.

Pattie replied to Gainor Hillegass on Jul 02, 2019

Thank you for your comment, I am so happy to hear you are working with your therapist and they are "a fountain of knowledge", sounds like you have a wonderful one, and that is such a huge help as we navigate living with Lipedema and Lymphedema. I bet you like the pool work once you start, it is a great way to be gentle on your body and still be active (and the compression of the water is a win win!). I will keep fighting for my mobility and spreading awareness for exactly people like you my dear. Thank you for taking the time to share your story, and I have learned a lot by what you are trying!