Lipedema Awareness: You Are Not Alone

The Lipedema journey is a challenging one. 

Watching our bodies morph into something we don’t recognize can be scary, painful and extremely difficult to navigate.

The journey changes us emotionally, too. We can have deep depression associated with living with a chronic illness, and have to take many steps to heal (repeatedly), because it is an ongoing/progressive condition.

But there are amazing people we find on the journey with us, and that alone helps, to not feel so alone, but even more, they elevate us, they build us up, they give us new found strength, and slowly our view of our body, our condition changes, and we can find a deep live and appreciation of all our bodies do for us every single day!

I had to change my perspective because I was in that deep depression, feeling like nothing we can do (because that is what we were told, because currently no cure). 

But by starting training again I got back so much more than my mobility, I got back my soul, my essence of who I am, who I want to be, and appreciating all this life can show me. 

We get this one body, this one shot at life, and I’m not going to sit by and watch it be taken from@me, I’m going to fight like hell to do what brings me joy. It may look differently than it once did, I may have to modify how I see it, but try I will ♥️ this community gives me that strength to keep trying. 

This #lipedemafitness community lifts me up. I thank each and every one of you on the journey with lme.

7th Annual Lipedema Triathlon Local Finishers

7th Annual #lipedematriathlon took place today and I want to thank some people…

1. all my training mates (who also participated today- woo hoo!!!)

2. @juzocompression and @lympha_press for sponsoring our shirts and water bottles

3. The @srymca for hosting us locally every year 

4. Most importantly to my coach/hubby for getting me ready every year - I couldn’t even think of taking on this challenge without you 💜

So much gratitude in all who donated and cheered us on AND all those that signup to participate each year! You are all rock stars!

The swim was more challenging than ever, since it was the first time back in the pool since covid.

The shower after pool and then getting back into fresh dry compression and clothes for the bike was also more challenging than I remember, has been a while since I’ve swam/showered/biked at the gym. I just couldn’t get dry and compression over even slightly moist skin is 🤯😫😓

The bike was more challenging, too, since I’ve been using my bike the first was off and tweaked my knee at the start of my second ride, but thankfully it eases up and I could finish the ride. It was my 200th @onepeloton ride during the #lipedematriathlon !!! That is what I have been working towards and it felt awesome to complete it during this event!

The 5K unfortunately did not happen, between the mobility and knee tweak it was a no go. But I am beyond thrilled with my performance today, so honored and humbled that I can still do it seven years later!

Time to recover! Happy Saturday all! Stay tuned for a full review with all the virtual participants!

Living With Stage 3 Lipedema Live: Gil Hedley and Dr. Herbst

Very excited to announce our next Living with Stage 3 Lipedema Live will be on Sunday, July 3 at 2pm EDT on the Lipedema Fitness Instagram page.

With very special guests: Gil Hedley and Dr. Karen Herbst for a discussion of Lipedema and Fascia.

Since my Lipedema diagnosis in 2007, I have always been interested in the cause, more than the symptoms, of my condition. Don’t get me wrong, I spend a lot of time caring for my symptoms every day, but my curiosity keeps me digging for answers and understanding.

My curiosity into the cause had me looking into fascia… If Lipedema is a loose connective tissue disorder, why aren’t we focused more on things like fascia? 

I found Gil Hedley’s fascia fuzz video on YouTube, and have been watching and learning as much as possible from his integral anatomy video series ever since. (Warning the video link is graphic, Gil works on human cadavers, but does so in a considerate way that is less shocking than you think it might be).

For those that don’t know, Dr. Herbst is a Loose Connective Tisue Disease Specialist and the Lipedema guru in our community, she has been a champion in the field for decades and always looking for new ways to improve our experience with our diagnosis. You can click here for a copy of the Standard of Care for Lipedema in the United States that she and many of her colleagues worked on. 

And I thought wouldn’t it be great to get Gil and Dr. Herbst together. 

I cannot express how excited I am to be part of this discussion. Very appreciative of them both spending time with us.

Hope you can join Crystal from @cfitrevolution and myself, Pattie from @lipedemafitness) as we welcome them and begin the discussions. 

Lipedema Awareness: Pear Shaped

JUNE IS LIPEDEMA AWARENESS MONTH - one of the classic signs of Lipedema, is the Pear Shape (smaller on top, larger on the bottom).

After college I was a size 4 on top, and a 12 on bottom. It seemed like no matter what I did fitness-wise or diet-wise, my top half got smaller and my bottom half stayed the same, or got larger.

Not all pear shapes will have Lipedema, but it is an early indicator. Having an upper body that is multiple sizes smaller than your bottom half, is an indicator.

We want early diagnosis for all those with Lipedema. 

Being diagnosed late stage has been super challenging, it is a chronic and progressive disease, an uphill battle, for the rest of my life.

My wish is for better education for the medical field (currently they get about 15 minutes on the lymphatic system). With better education they can know what to look for, so we can get an earlier diagnosis for all those with Lipedema. 

Spreading awareness helps a lot! 

We shouldn’t have to become our own best resource on Lipedema, I shouldn’t know more than my doctors do. 

It’s been 15 years since a Certified Lymphedema Therapist (CLT) diagnosed me, and I still cannot find a doctor in my area that knows what it is. 

And the last time I visited a CLT in my area, I was told they know a piece of the Lipedema pie, but with all my researching and advocacy, I know the rest of the pie. 

So basically I’m doing everything possible to treat it on my own, and there is nothing they can do beyond what I’m already doing.

While that makes me proud to know I’m doing everything I can in their eyes, I’m still more curious on finding better treatments and answers. 

Stay curious! Ask questions, dig deeper, keep sharing, spread awareness!

Lipedema Awareness - Strength Training

JUNE IS LIPEDEMA AWARENESS MONTH - as someone with late stage Lipolymphedema, strength training has been really key for me. 

It obviously improves our physical strength, our muscles, balance, etc., but by taking action, it can improve our emotional strength, too.

Lipedema can be viscous, and try on the daily to strip away our mobility, so every minute we can invest into stopping that is so important. 

Having self care routines to help our skin, or movements to pump our lymphatics is huge also, but one of the biggest improvements to my quality of life has been strength training. 

It got my core strong, and it gave me back my mobility. It is what keeps me moving, even when menopause has brought on more mobility challenges recently.

And it doesn’t have to be all or nothing, even ten minutes is good, or five, or whatever you are capable of. #allorsomething - a little more today than yesterday.

Keep fighting for your strength, and mobility. Seek out whatever helps you get there. Share what you are doing, #wearestrongertogether 

Lipedema Awareness: Column-like Legs

JUNE IS LIPEDEMA AWARENESS MONTH - a common term used to describe Lipedema legs is “column-like”. Meaning less definition in the thigh, knee and calf areas so the leg looks like a column.

The shape change of my legs, after the C section of my daughter, was what sealed it for me, I knew that there was something different, something was going on with my body.

I always had larger legs growing up, but after the surgery my lower legs changed shape, became more column-like, and the ankle cuff more pronounced.

In researching this it sounds like it is due to loose connective tissue and inflammation. Lipedema is considered a loose connective tissue disorder.

Reading deeper I found out that connective tissue remodels after hormone changes like puberty, childbirth and menopause, etc. and there is a belief that estrogen plays a major role in that remodeling.

We know Lipedema is primarily a women’s based disorder, and they have said there is a link to estrogen. I think I need to dig deeper into these functions to try to understand what is going on, as my body has changed drastically once again after menopause - which is when there is a huge drop in estrogen production, which some believe also changes the way fat is stored in our bodies. So much to try to understand.

Note: Not every type of Lipedema has column shape legs, types 1 (buttock only), 2 (buttock, hips and thighs), and 4 (arms only), don’t involve the lower legs like types 3 (buttock, hips, thighs, and calves) and 5 (calves only).

Lipedema Awareness: Flying with Lipedema

JUNE IS LIPEDEMA AWARENESS MONTH - and flying with Lipedema can be incredibly challenging.

First - our Lipedema tissue can easily set off the TSA body scanners, which require an agent pats you down. A couple suggested reasons are scar tissue will set them off, so maybe all the fibrotic tissue is causing it. Hot spots or wet spots (sweating) can set them off, think about all that extra compression and anxiety about flying - a possible sweaty scenario for sure. Even loose fitting clothing - too much space between clothing and skin might set it off, too.

Second - swelling can be an issue, so wearing graduated compression is even more important when flying, because the cabin pressure decreases as we rise, so our blood and lymph circulation slows down. Add to that sitting for hours on end, with limited room to move, means even those without Lipedema experience swelling.

Third - our Lipedema hips can make fitting in the seats painful, especially as the size of airplane seats continues to get smaller and smaller. 

As you might have noticed, I used a @southwestair plane in my graphic, I did so as a thank you to them for their COS (customer of size) policy, with it you can purchase a second seat and fit more easily, and they will refund your second seat after the flight. 

You don’t need to purchase a second seat, but one will only be available if the plane does not get sold out. On the last trip we took, three of the four legs were sold out and I would not have gotten an extra seat in that scenario. 

With the COS policy, you can also board first and bring someone else traveling with you for assistance, that went a long way in getting situated and not feeling like you were holding up other passengers. My daughter and I boarded after anyone needing assistance and easily found three seats together.

I wrote a 2 part blog post about flying with Lipedema in 2019, if you want to check those out for more info. Part I, and Part II. I find researching to help get prepared went a long way with making me feel comfortable flying.

Lipedema Awareness: Aqua Fitness

JUNE IS LIPEDEMA AWARENESS MONTH - I have found one of the best things I can do is to be as active as possible, and one of the best ways for me to be active is AQUA FITNESS!

We know aqua fitness provides low impact, resistance-type training, it also improves mobility, range of motion, balance, and agility, and it helps pump our lymphatics!!! 

The water acts like graduated compression (which many of us with Lipedema and Lymphedema must wear) and being in the water (and the natural graduated compression it provides) helps improve our lymphatic and Venus functions (aka it reduces swelling), and personally it is amazing for my mental health, too!

It is my happy place! AND My favorite part of the Lipedema Triathlon!

I was always curious about how the water compression compared to the graduated compression garments I wear, and when I couldn’t find answers anywhere, I turned to science and broke it down. 

A couple years ago I wrote a blog post about it. Did you know walking in only 3 feet of water is equal to about 67 mmHg (as an example, I wear 30-40 mmHg grade compression).

The pool is the only place I can be without compression, and get a great workout!

The only downside is that gravity wake-up call when you climb out of the pool, which makes already heavy legs feel even heavier. And don’t forget to take extra good care of your skin after.

Lipedema Awareness: Self Management

Lipedema is considered a self management condition. Meaning it is up to the patient to manage their Lipedema/health. 

Managing a chronic and progressive condition is challenging; the upside is you become the expert on your body (your own best resource). 

The downside is you feel like a Guinea pig.

Self management is meant to have the patient manage their symptoms and treatments, checking in with a medical professional as needed (typically annually) to ensure things run smoothly.

But with Lipedema most medical professionals don’t know what Lipedema is, or worse, don’t believe us.

Over the years we have discovered we can all present with different symptoms and we can all respond differently to treatments tried. What works for one Lipedema patient may not work for another. Which amps up the challenge of living with a chronic/progressive illness.

My best advice is to start a journal (better yet a binder) for tracking your self management “experiments”. 

Not only will it help you keep track of what your symptoms are, what treatments you have tried, and how your body responded, but also becomes something you take to your Dr. appointments. 

For we also learn how to become our own best advocate. Standing up for ourselves and weeding out those who do not serve us well on our health journey.

JUNE IS LIPEDEMA AWARENESS MONTH - Spreading awareness is not only about reaching those who have the condition and may not know, but it is also for educating medical professionals and hopefully guiding research, and more.

Lipedema is best served when medical professionals and patients can come together and share experiences/knowledge to move the treatments forward and hopefully one day find a cure.

Knowledgeable medical professionals and researchers give us hope, and that is a huge help when living with a chronic condition.

Lipedema Awareness: Fibrotic Nodules

Lipedema tissue is unlike regular adipose tissue, it has hard fibrotic nodules that can range in size, and continue to grow larger as the condition progresses.

The nodules feel like peas, rice, beans, etc. depending on their size, and you can feel them just under the skin. 

You can feel it by gently touching and palpating the area, which is one of the techniques used by trained medical professionals to diagnose the condition.

But be careful if you are touching someone with Lipedema, as it can be excruciating for them to be touched. 

They believe the fibrotic nodules are created because Lipedema is loose connective tissue that allows more fluid to collect than a body with healthy connective tissue. The extra fluid limits oxygen getting to the area which creates a viscous cycle of inflammation and fibrosis, so the nodules continue to grow.

You can read more in the Standard of Care for Lipedema in the USA.

JUNE IS LIPEDEMA AWARENESS MONTH please help us spread awareness so others can be diagnosed sooner. Thank you!

Lipedema Awareness: Blood Vessel Fragility (aka Bruises Easily)

Everyone knows how easily bananas can bruise, and that is also something people with Lipedema share in common, we bruise easily - which is most likely caused by an increased fragility of our blood vessels.

Blood Vessel Fragility diseases share something in common, too… defective collagen.

Defective collagen weakens the vessels and makes them more susceptible to bleeding from minor trauma.

You would think that just means we should take in more collagen, but I’ve tried this and personally it causes pain in my feet, but others find it does help their Lipedema symptoms.

One of the biggest lessons learned when living with Lipedema, is that we all are different in how we present with our symptoms, and in how treatments, movement, ways of eating, supplements, surgery, etc. works for each of us.

Sharing in support groups is so helpful; seeing what others try & how it works for them is helpful. Not just for ideas, but to help us to not feel alone (or to blame ourselves) if something works for others, but not for us. We are not to blame.

JUNE IS LIPEDEMA AWARENESS MONTH - please spread awareness, so we can get others diagnosed sooner, when treatments will work better.

Lipedema Awareness: Small Fiber Neuropathy?

You may have experienced Paresthesia (aka. pins and needles) - it is a common experience when you lay funny or cross your legs too long etc., it happens because of pressure on a nerve, it feels tingly and numb and when the pressure on the pinched nerve is released it goes away.

With Lipedema you can also experience random sharp pains (different sensation to pins and needles); it feels like a bee sting, or someone taking a pin or needle and sticking you with it in various places on your body (mine is mostly in my legs).

I believe this is also nerve related, and recently came across “small fiber neuropathy” as a potential cause. More research to do.

This pain happened a lot when my symptoms were at their worse, but since we started training in 2013 and moved to a clean eating style that frequency has dissipated, it still happens but much less. 

At my worst I also would have numbness in the outer edges of my feet, and the pins and needles on top of the (Electric-shock level pain randomly throughout the day) is what WebMD describes the pain as (listed as one of the symptoms on their page about small fiber neuropathy).

The WebMD list also included other symptoms we share about in our group… like cramping, sweating, gastrointestinal issues, etc.

One of the questions I’d like to address with our Lipedema medical community at the next Lipedema Patient Roundtable (hosted by Lympha Press) on June 15, 2022 at 8pm EDT. Click here to register.

JUNE IS LIPEDEMA AWARENESS MONTH, please spread awareness, so those with the condition can get diagnosed before they are late stage 3 #lipolymphedema like me. Thank you.

Lipedema Awareness: Lipedema Translates to Fluid in the Fat

The visual heaviness of this image, is exactly what it feels like when I walk, as someone with Stage 3 #lipolymphedema 

Do you remember playing with water balloons as a Kid? Trying to see how much water you could fill up the balloon with, without it bursting? Remember the way it pulled and moved as you moved your hand?

Lipedema feels like you are wearing a heavy, water-filled suit, that moves independently with every step you take. It is heavy and tiring to carry around, and to some it feels like it sloshes as you move, to others it feels like cement.

At a recent trip to the ocean, my body became one with the ocean, I was so buoyant I was being tossed all over, even Coach could not hold me still sitting in the edge of the beach. I got sea sick within minutes, and that was heartbreaking as the ocean is my happy place.

JUNE IS LIPEDEMA AWARENESS MONTH, please spread awareness, so those with the condition can get diagnosed before they are late stage 3 like me. I have Primary Lipedema, and because it took so long to get diagnosed, I was late stage and had lymphedema on top of it. Early diagnosis would have gone a long way in saving my mobility, and slowing progression. I spread awareness to help others get diagnoses sooner than I was.