5 Myths about compression and treatment for lymphedema

5 Myths about compression and treatment for lymphedema

Let’s face it, wearing compression can be really hard.

Especially if you have a condition like lymphedema or lipedema that causes chronic swelling. But not wearing compression can be far worse! Avoiding or neglecting compression or treatment can put you further down the path of pain or debilitation. 

Pandere Shoes was launched out of my own personal search to find shoes to fit. 

When I was 16 I had cancer surgery and this started my odyssey with lymphedema. Like most lymphies, it was hard to face the reality that I would be dealing with swelling for the rest of my life. Frustration. Denial. Grief. And eventually acceptance.

Decades later, after the birth of my daughter, my leg swelling turned into an out of control mess. This was the turning point when I understood I had to take action. I finally realized that my denial was getting me nowhere. By this point, Complete Decongestive Therapy (CDT) was just becoming available. Treatment now included massage therapy (MLD) and improved compression garments. 

It took me another 15 years to actually feel good and find the right recipe of products and services to manage my swelling. 

[Yippee!]

In that time an absolute explosion of products and treatments became available that ultimately restored my mobility and saved my life. It was this major life change that inspired me to start a footwear company that specializes in comfortable and expandable:

Let’s dive into the common myths we often hear (and have said!) about compression or treatment. 

Myth #1 - It is too late to get started

Friend of Pandere, Dr. Alexandra Hill ( CLTA) reminds us:

“It is never too late to get started!” 

Some people grab the bull by the horns and the same day they learn they have a diagnosis (lymphedema, lipedema, CHF, diabetes...what else do we want to add here…?) they tackle it like an expedition up Mt. Everest! 

Lots of other people find themselves in a state of grief that can be a huge obstacle to getting treatment. The grief is a normal part of the process. Everyone deals with it, but when you can’t see any light at the end of the tunnel, it can be hard to begin the journey toward feeling better.

In between these two extremes is where most of us live. We move forward when we’re ready and hopefully we start at some point. The most important lesson here is - Just Start Somewhere!! 

Treating swelling is a big job and it can be overwhelming. You gotta take baby steps in the beginning and teach your brain and your body to do things differently. It is truly never too late to start trying to reduce at least some of the fluid in your feet/legs/arms or anywhere else in your body. Reducing fluid can increase your mobility and generally make you feel better all over. And many times, it’s a series of attempts that can get you on the right path. 

Many times, it's a series of attempts that can get you on the right path.

If you’re older, you might have lost some hand strength, or mobility, or dexterity that can be useful in treating swelling. There are lots of new products available to help including pumps, wraps, and even new techniques. At Pandere Shoes we work routinely with therapists and they will be the first ones to say that doing nothing will make you feel worse. Doing something, even if it’s small, will make you feel better. 

It’s never too late to start. 

We really like a company called Bright Life Direct. They’ve been around for 30 years. They have all kinds of medical supplies and they’ve got amazing customer service. 


Myth #2 - I’ve tried it and it didn’t work

The funny thing about swelling is that everyone’s lymphatic and vascular systems function uniquely. It can really be a lot of trial and error to find what works for you. This can be made worse for patients whose doctors don’t have a lot of expertise in treatment. 

“For years, doctors told me I just needed to lose weight,'' says lymphedema blogger and plus sized influencer Pale Ginger Pear (aka Cara Cruz).  

Cara’s statement highlights the fact that most physicians and providers in the US simply don’t have much training around the lymphatic system. We know this is changing thanks to the outstanding work of LE&RN along with award winning actress Kathy Bates. Their collaborative efforts with large medical institutions and out reach in the halls of Congress have shed important light on the needs and obstacles for people with chronic swelling!

You gotta know that there are some kickin folks working on your behalf to make many more options available for you! Here is a short list of our Favs. 

  • Lymphedema Advocacy Group who are tirelessly pushing forward the Lymphedema Treatment Act to get congress to approve reimbursement of compression garments for Medicare patients.
  • LE&RN - Lymphatic Education & Research Network have focused for decades on expanding research and funding for lymphatic treatment.
  • The Lymphie Life - Alexa Ercolano publishes this online magazine for people with lymphedema. It’s rich with information and resources.
  • Ninja’s Fighting Lymphedema Foundation providing a forum for lymphedema education and a growing resource library for patients and healthcare workers.

Here is my personal list of obstacles that I had to face.

  • The stockings I was given formed a tourniquet behind the knee making them official torture to me (this is common).
  • Compression garments are expensive and I often didn’t have the money. Over time, I learned that once I found the right garment, the right materials, the right compression level, the right fit, the right special features, there was nothing that could stop me from making sure I had those garments on hand 100% of the time. When you find the right recipe, the motivation is high because you FEEL better!
  • The heels of the stockings wear out so fast that this caused additional pain as the compression was no longer distributed correctly. **See my rant to compression garment manufacturers at the end of the article if you want to enjoy listening to me let loose!
  • The compression never seemed to be enough to hold the swelling down. They just seemed ineffective. I often would give up as opposed to pushing through for a solution.
  • My insurance company continues to deny my claims (to this day!) which requires a lot of extra legwork on my part to make them do what they should do from the outset.

I can assure you that every one of these issues was eventually dealt with. At the beginning I was wearing 20/30 mmHg. Now, 30 years later, I wear a custom Jobst Elvarex stocking that’s 49/70 mmHg. It has a soft insert behind the knee that fits exactly with my body and doesn’t rub or cut into the skin at all. My swelling is held down and at the end of the day, my leg may feel a little tight, but overall it looks relatively unswollen.

Myth #3 - I can’t find resources to help me

We understand that access to treatment is uneven across the country. Access to lymphedema therapy, manual lymph drainage MLD, or CDT Complete Decongestive Therapy can certainly be a challenge in rural areas of the US. You may have to work harder to find resources but they are there. And if you can’t find a therapist within a reasonable drive, we’d like to hear from you. 

Pandere is a member of LANA - Lymphology Association of America. On the LANA website, you can look up a lymphedema therapist in your area. We are keeping an eye out for rural areas that have no providers. Pandere Shoes is part of the “lymphesphere” which refers to all of the supportive services for people with chronic swelling. If there is someone who can’t find a therapist, let us know and we will try to help connect you to a therapist.  

In the meanwhile, there are lots of online resources to help you.

Numero Uno! Online Support to the rescue!

If you are depressed and feeling overwhelmed or unmotivated, it is absolutely critical that you join one of the zillion support groups that are available online.

Talk, Share, and Connect until you feel the first ping of motivation to work toward feeling better.

Sharing your story to others who are empathetic and can appreciate your story can trigger relief. You’ll cry some, and that is cathartic. You’ll learn some, and that is informative. Telling your story is essential to getting through enough of the grieving process to find some motivation to move forward.

Numero Duo! Online Resources!

Here is a short list of online resources that can really help you get connected. There are oodles of them on Facebook and instagram.

  • There are lots of tutorials on youtube, but we recommend you check out Kelly Reed, PT, DPT, CLT. Her videos are outstanding! 

Myth #4 - It’s not comfortable now and it never will be

In my experience almost everyone who tries to use compression or goes for treatment for swelling experiences discomfort as they experiment to find the things that work and make an impact. Just take blogger Alexa Ercolano of The Lymphie Life. In a recent interview with her, she said,

"I had a lot of resentment towards my leg. I did not want to wear my garments! However, I had a come to Jesus moment in my 20's. If I wanted to feel better, I just had to do it!"

If you’re doing decongestive therapy and you’re going to a therapist for manual lymph drainage and bandaging, this is a BIG job! Kudos on you! I don’t think anyone is going to say this is fun, but it is a means to an end. There are very few people (I don’t know of any) who did MLD treatment and had no fluid reduction at all. 

And MLD is not really a one and done kinda thing folks... 

Bandaging is usually part of a long term treatment plan. So maybe you did your initial treatment and now it’s 6 months to a year later and you need a “tune up” because your swelling is starting to return. This is pretty normal. But with each effort to reduce the swelling, you get smarter. You learn a new trick or two, or a new tactic. You keep pushing the envelope to make it work just a tiny bit better. And eventually you’ll be able to do these tune ups on your own from home. 

My tune up process is:

  • Spend a day or two (up to a week) doing a modified bandaging every day. 
  • I put on my beloved night garment (Jobst Relax) and wrap a layer of short stretch bandages on top of that garment all the way up to my thigh. 
  • I wear big pants for a few days while the bandages do their magic.
  • By the end, I have less fluid in my leg and have the increased mobility that I’m usually after. And I always feel better. This is something most people can do on their own.

Expense of supplies is also not comfortable! Bandages and supplies are expensive and not covered for anyone on Medicare. [hrumph!]

Look For Sales!

Check in with online compression garment retailers, and ask for info on their next sale. Bright Life Direct is an online retailer that Pandere Shoes recommends and supports. Their mission is to help people get compression, and also have sales throughout the year!

Trouble With Insurers?

If you're having trouble with your insurance company paying for supplies, what I can tell you is that it is mostly a matter of persistence. To get a claim paid, you must have "medical necessity" and your provider (MD, PA, NP, DO, ND etc) needs to state it EXACTLY the way the insurance company wants it to be stated. Catch 22 - they usually won't tell you the types of words they're looking for. (Welcome to American health care.) I have a Blue Cross Blue Shield plan and I am currently engaging in yet another battle with them on "medical necessity". I have been doing this for years.

Let's Fix This Problem Permanently!

There is a legislative fix for this in the works. If YOU are on Medicare and you have not written your Congressional Representatives then you need to get on this asap. The Lymphedema Treatment Act is the solution for this problem and we just MUST get this passed.

 

Last on the money subject. I know the money part of this can be overwhelming, but you really are worth it. 

MYTH #5 - I’VE TRIED EVERYTHING

Have you?

Because the lymphesphere is growing every single month! Between the advocacy groups and the explosion of biomedical products that have hit the market, even the most savvy consumer is unlikely to have tried everything.

Here is our Pandere list of things you should try if you  haven’t already.

  • Start following Kelly Reed’s program. You’ll feel better! It’s FREE!
  • Ask about custom garments: If your stockings aren’t working, take a real hard look at custom stockings. I was told for years that custom garments are only for people who have unusually shaped limbs or needs. This is 100% false. I switched to custom garments in 2015 and will never go back. 
  • Join a Support Group online. If you’re stuck, this is the best place to start. Share why you’re stuck and let’s see where this can go!

If you need an ear to bend, we're there for you 7 days a week. Chat with us online. We have often found  that shoes can be the beginning of getting your life back. We're here for you. 

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Postscript: Laura’s Rant on reinforcing the heels of compression garments. Hey, maybe someone will read this someday and they'll reach out to me!

Dear compression garment manufacturers.

Yeah, you know who you are! (Juzo, Jobst, Medi, and all the others...)

First off let me shout from the roof tops on how far you’ve come. Those of us that had compression garments back in the late 70s (for real!) know that we are in a glorious renaissance of compression supplies and the last thing I want is for you to feel unappreciated for your amazing and miraculous work. Bravo(a) to all that are working in this field and please for the love of GOD don’t stop! We need you and we love you!

Now, having said that, I’d love to know, for realizies, why you can’t reinforce the heels of your garments. I have asked on many occasions for this custom feature, only to be met with “We’re sorry, we can’t reinforce the heels.”

And this is when I gotta call out the ol’ BS truck. Yeah, you can reinforce the heels. If you can add a special soft insert behind the knee and on the top of the knee, then y’all can add in something to keep the heel from wearing out after 1-2 months of daily wear.  This is where I get confused. Do you not want to because people will buy less garments? hmmm...

And if this is true, then I would just delight in challenging one of you (Jobst, Sigvaris, Medi, Juzo…) to develop and invest in this one single small feature - reinforced heel. Cause if you do, you will be on the leading edge of an unstoppable trend. 

If I didn’t love you so much, I wouldn’t try to be improving our relationship right now. 🧡🧡🧡🧡 Thank you again for all your wonderful products.


Laura Oden

Customer for life!

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