Lipedema,  Siouxie's Journey

My Lipedema Diagnosis

My body hasn’t been right for years. But it took a deep nose dive in the summer of 2012 when I could no longer walk easily without assistance, my memory was presenting a significant problem, and the pain throughout my body was almost overwhelming. 

I remember walking to my front door with my husband supporting me, a look of concern etched deep across his face. I looked into his eyes and saw fear there–something I’ve rarely seen in the decades we’ve been together. My protective nurturing instincts kicked in and I locked eyes with him and said, “It’s okay. Whatever is going on with me is not serious.” Normally that would have been reassurance enough. But without hesitating, he said, “You don’t know that. Neither of us knows that.” And he pulled me a little closer and helped me into the house. 

None of it made sense because I’d lost 40 pounds by focusing on clean-eating and regular light exercise. I’d been eating a whole-food plant-based diet with no processed foods of any kind and plenty of green drinks for two years straight–all with the focus of getting healthy and “feeling normal”. 

Yet there I was, feeling a sort of constant vertigo, with legs that were weak and heavy and an inability to recall the names of people I’d known for most of my life. It was terrifying.

But we had hope.

Just two more days and I’d be on a flight to Northern California to see a doctor who’d been practicing for over 40 years and felt sure he could help me. 

The Misdiagnosis and Treatment

The travel was grueling and the pain and weakness in my lower body were significant enough that I required wheelchair assistance at the airports and I was traveling solo. Armed with my extensive blood test results, I was determined to get answers and help.

Once I arrived, I was seen by Dr. Michael Klaper. He’s a plant-based MD who focuses on diet and medical care to heal. His examination was thorough. My bloodwork was actually excellent despite the fact that I was still technically obese. He was intrigued as he palpated my arms and legs feeling the irregular nodules and lipomas, asking if they hurt. The answer was “Yes. Always. Everything hurt, but especially my upper arms and my legs.” 

“You have a rare medical condition called Dercum’s Disease named after the guy who discovered it, also known as Adiposis Delarosa-which means painful fat.” 

This made so much sense to me considering how I felt ALL. THE. TIME. 

He explained that modern medicine’s approach to my condition is to concentrate on pain management with Lidocaine IV’s that flood the body with pain-killer so that living is possible. 

Ummm, no. I mean, I get the desire to NOT be in constant pain, but how is that a solution? What about finding the root cause? What about removing the painful fat? 

None of these were successfully being done, so it was reduced to this. BUT, Dr. Klaper had an idea, and he was super excited about it. 

He’d never had a patient with a fat-specific disease before and this was a really big deal if it could work.

Wait for it….

A medically supervised water-only fast. 

Wait, what??

Yeah. So, when you water-only fast properly, your body goes into a fat-burning ketogenic state after 3 days. The body never starves. It uses fat for fuel and the down-time for healing. First, it burns up the abnormal fat, then the visceral fat (which is the dangerous fat around the belly that leads to heart disease, etc.) and last, any excess body fat is consumed. Done correctly, it can heal a body from the inside out. And, as it turns out, it is one of the oldest forms of therapy on Earth and has been done successfully by some of the greatest spiritual leaders in the world. 

I mean, a modality that eats fat? And I have a fat-specific disease? Interesting…

So, I agreed, and started the prep, and then proceeded to go through a medically supervised extended water-only fast for a total of 40 days.

The 40 Day Water-Only Fast

The whole process took two months because of diet prepping and specific methods of safely breaking an extended fast that took weeks. 

Lots of fat melted away. I experienced days where I was in so much pain that I cried, but scars disappeared, my thinking and memory became sharp, and vertigo completely resolved.

But even after I was done, and after the re-feeding, I still hurt.

I went back to my life in less pain and less brain fog, but still weak and tired. I rode my bike every day and ate what I believed was healthy, but the pain and heaviness persisted. 

Dr. Klaper had no answers for the persistence of my pain, and I kept searching for answers on-line. The problem is that Dercum’s Disease was even rarer back then and there was very little information.

However, my research did lead me to the leading authority on this disease, an Endocrinologist named Dr. Karen Herbst

For those of you who are new to this, her name may not mean anything to you yet, but she is a legend in the world of Lipedema and arguably the leading authority and advocate for these conditions. 

The Diagnosis I’d Been Waiting For

I was lucky enough to get an appointment with Dr. Herbst personally. I explained that I had Dercum’s Disease and what had been happening and what I was doing to address it. She was awesome and patient, and after looking me over, she said, “You don’t have Dercum’s Disease. But you do have lipedema.”

I was gobsmacked. What’s that?

She explained that women who have Lipedema are sometimes misdiagnosed with Dercum’s Disease and though some women have both, and they may be related, that lipedema is a specific condition in itself. 

As she detailed the symptoms and character of lipedema, questions I’ve had my WHOLE LIFE fell into place. AMAZING!

She went over the conservative methods of treatment with me, including diet and supplements that could help immediately. She cautioned that these may or may not help with the lipedema pain, but explained that this is not uncommon. She also explained that there were more aggressive treatments such as surgery, but there were not enough lipedema patients in the US who had done it to tell the long-term results. 

The thing that Dr. Herbst impressed upon me the most, is that there is support and that I was not alone. 

I can’t tell you how much this meant to me. 

Even now, all these years later, my eyes well up as I type these words. I went through my whole life with questions and feeling like I was some kind of weirdo with these funny, misshapen legs and that my pain was a unique anomaly. Yet here was this woman telling me that I’m not alone and that what I’m going through is normal for women like me–and by God, there are a LOT of women like me. 

Total game changer. 

She sent me a list of resources including a Facebook Group where I could meet others and see for myself that I am part of a much bigger whole.

That afternoon, I was researching lipedema on the Internet while I was waiting to get approved in the Facebook group. My husband walked past me and stopped short. Looking over my shoulder, he asked, “Why are there pictures of your legs on the Internet?” 

“Those aren’t my legs. That’s lipedema.” Tears rolled down my cheeks as I looked at this woman’s body that looked like mine. After all these years, I was not alone.

Neither are you. 

Join the various Lipedema Facebook Groups. Connect with other women just like you. There are THOUSANDS of us on-line now and the awareness is only just beginning. It is estimated that one in eleven women have lipedema. That’s a LOT of women. And most of them don’t know that they have it. 

Conservative treatment in the early stages has been proven to slow or even reverse the progression of lipedema. If I’d known 20 years ago, I might have been able to prevent its increase. 

Still, I can’t tell you how much it means to me to know that I’m not alone. After all, you’re here. 🙂

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