My journey begins…

On December 29, 2014 I went to see (as a patient, not for work) Dr. Karen Herbst at the University of Arizona in Tucson – she’s an endocrinologist that has made her life’s work adipose tissue disorders. On top of being a great doctor, she’s a great human being.

She officially diagnosed me with a fat disorder called Lipedema. You’ve probably never heard of it as it’s a highly underdiagnosed condition in the U.S. (despite it’s discovery in the 40’s at Mayo…) It explains my body shape (small on top and large on the bottom) and why I carry fat in my legs, hips, and butt. It has spread now into my arms and abdomen. Lipedema fat is different than regular fat – it feels different to the touch (think tiny pebbles under the skin) and it cannot be lost by diet and exercise.

My story, like so many others, is getting discouraged about not losing weight despite caloric restriction and exercise. Women with lipedema often gain weight even while dieting and exercising. We generally have lots of inflammation so what we eat is critically important, rather than the calories themselves… There are cases of anorexic women with lipedema, too.

Lipedema’s etiology remains unknown and it remains underdiagnosed. What is known is that our lymphatic system is “shot”. Patients with Lipedema have lymphatic dysfunction that makes fluid sit in the tissue with all its nutrients and protein and fat grows. In addition, there is widespread pain – for me, it’s mostly to the touch. Touching certain parts of my body cause extreme pain, even with a light touch. I ache frequently and have suffered for years with fatigue (but have kept that to myself mostly.)

Liposuction is the only known cure. It has to be either the WAL (Water Assisted Liposuction) or tumescent methods, no general anesthesia and performed by a doctor who understands lipedema and therefore understands how to preserve/spare the lymphs. Women with lipedema who have had “regular” liposuction most often develop lymphedema (think breast cancer patients) and their legs get bigger. I’ve seen a few photos. Terrifying.

I’ll now start researching my options for surgery. This type of surgery has been pioneered by the Germans. The few surgeons (and I mean there literally are 5 surgeons) in the U.S. mostly were trained by one German surgeon in particular – and this occurred back in August. Being a guinea pig as the U.S. surgeons perfect their technique isn’t quite as appealing to me. I’m seriously considering going to Germany.

What I can do before I have surgery:

• Continue with Manual Lymphatic Drainage (MLD) – I go to a therapist for this to get this done to get the lymphs moving. I can feel the fluid moving through my body. It feels like someone opened up a valve. It makes me pee afterward.
• Get a lymph pump – the doctor thought this would be good for me since I travel and can’t get the MLD routinely.
• Take Butcher’s broom supplement (improves lymphatic pumping) and Vasculara (prescription medical food) to help with the edema (maybe Selenium as well to decrease edema)
• Wear a low compression garment (Oh, boy, I can’t wait)
• If I had a room in my apartment, I would get a whole body vibration machine (the doctor suggested I find someone who has one and pay per use, she thinks this is very effective at improving lymph flow.)
• CVAC – it’s a high performance altitude simulator for improving blood flow and oxygenation in tissues. Very effective at reducing pain.
• Continue with a Paleo diet – she recommends a RAD (an anti-inflammatory diet) but was pleased I found Paleo and supports it. She was also very happy I gave up Diet Coke (I admit, I have an occasional one…) The Paleo diet has been great for me for reducing pain. I can feel it. Feel it when I stray (which has been the past 2 weeks, especially…)

Mobility (and pain) is a huge concern with lipedema and a major reason (other than cosmetic) that I want/need the surgery. I have chondromalcia in my knee (that’s why I struggle with stairs and any weight bearing on a bent knee (no lunges, squats, etc.) I did ask the German surgeon (Dr. Stutz) at the conference I attended in September if surgery would correct the chondromalcia and he said absolutely. In his photos you can see a huge change in the gait of his post-operative patients.

I also have a hypermobility syndrome known as Ehlers danlos hypermobile type. She called my knees “wobbly.” Interestingly, during the history, I was inquired about sprained ankles (I’ve sprained them at least 4 times).

Ready to start these new supplements and see what effect they have. I will never be thin or have nice legs and I’m OK with that. I can stop this from getting worse and keep my mobility and put my pain at bay. Although I wish I would have been diagnosed at Stage 1, I’m only a Stage 2. Advanced stages struggle significantly with mobility.

I want to share my story so that others can get the help they need, too. I’m fortunate that I know now what it is and have a plan.

3 thoughts on “My journey begins…

  1. Hi Chyenne,
    Its Omeiza an old coworker,this is very interesting to read and I commend you for taking these steps. I wish you the best and I’ll continue to follow you during this just journey.

    Like

  2. hi Cheyenne, thank u for the Facebook invite. How exciting for you to have a diagnosis for your accumulated health problems. You have answers! Praise God! Now onto more excitement evolving into being a pain free better you. I will add you in my prayers and remain interested in your brave journey. You are and always have always been such a beauty. Thanks for posting, we got your back!

    Like

  3. Hi! I too suffer Lipedema and literally diagnosed my self as in this rural community no one could give me answers. Diagnosed in 2010 I have the leg pump, and go to a massage therapist once a week, and so far have been able to keep it at bay….not any bigger in last 5 yrs. I take selenium and do get very tired by evening. I do not do stairs unless I have to….very difficult. I surf the internet often to look for new ideas. I have seen doctors in Kansas City and Joplin, MO who confirmed my diagnosis. I want to be able to enjoy my grand children so I may think about surgery. Still hope that insurance companies would help.
    Carol Davis
    Fort Scott, Kansas

    Like

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