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Lympha-what? What is lymphedema?

Understand the basics

Most people haven’t heard of lymphedema unless they’ve had breast cancer or some other type of cancer, had lymph nodes removed and ended up with swelling in their arms.

Unfortunately, the lymphatic system, an important ghostlike network of protein-rich fluid that helps remove toxins in the body. Like toilet plumbing, the lymphatic system helps flush everything out of your body through a clean-up crew of lymph vessels and lymph nodes.

When the lymphatic system doesn’t work right, it backs up like a clogged toilet and body parts can swell like a balloon with fluid that is filled with bacteria, viruses and other fun stuff. If that lymphic fluid isn’t released from the body, it can be hardened and deposit as pockets of fat.

Unfortunately, the lymphatic system is vastly understudied.

Many joke in the medical community joke only 15 minutes is spent on the lymphatic system during med school. (It is a subsystem of the circulatory system, that is essential to one’s immune system. )

Secondary vs Primary Lymphedema

People can get lymphedema in a variety of ways. There’s the secondary kind of lymphedema that can come secondarily after having lymph nodes or vessels damaged during surgery (mostly cancer), from trauma (like being a war veteran), after a severe injury or car accident, and even from an insect bite. A vast majority of people get lymphedema secondarily.

But some people, more rarely, are born with lymphedema. It's more prevalent in females than males. This typically happens during three significant hormonal shifts: being born (congenital lymphedema), during puberty (lymphedema praecox) or after age 35 (lymphedema tarda).

A lot of times if someone has lymphedema in their leg, their right leg will be significantly larger than their left based on “water sheds” and where lymphatic fluid drains in the body.

Get diagnosed

Getting diagnosed with lymphedema can be a long and frustrating process. Some people suffer for years and have no idea why their body parts are swelling.

Some doctors discount patient concerns (like the doctor who initially saw me) and will tell people to eat less and exercise more. Or they will prescribe diuretics which can be worse for protein-rich lymphatic fluid and increase swelling.

Getting diagnosed typically happens by the process of elimination…but ruling out other potential diseases first, like blog clots.

When a doctor suspects someone has lymphedema they will typically send the person to an outpatient occupational therapist, hopefully, a certified lymphedema therapist, who is also skilled in Manual Lymphatic Drainage.

Be proactive. Seek treatment.

Like so many other things, the quicker you can receive medical treatment the better. The key is draining, removing as much lymphatic fluid as possible before it hardens in the body and has to be “chipped” away with foam. This can happen rather quickly, sometimes within a few months, but definitely within a year.

Manual Lymphatic Drainage (MLD) is a massage-like technique to move the lymph fluid to the lymph nodes and vessels that are still working properly. (There are a lot in your groin, stomach, arm pits and neck). The idea is to stretch the skin to move the stagnant fluid out of you.

If someone has severely untreated lymphedema their skin will actually leak and drip with fluid.

This can take weeks or months to do at a hospital or outpatient healthcare facility. The fluid is heavy and can be painful, like carrying an unborn baby in your body.

Once the fluid is removed, it will quickly return if someone doesn’t wear compression garments. Lymphedema therapists will use layers of gauze and medical bandages (or velcro wraps) to bind the swollen body parts to try and significantly reduce their size.

There are “off-the-shelf” medical-grade compression garments and custom garments that are sized to your body. Unfortunately, they are expensive and need to be replaced every six months. There are different levels of compression.

It feels like you are walking around in a scuba suit or you wearing a bodysuit made of Spanx.

It’s not fun, but once you’ve felt the pulsating migraine of lymphatic fluid swelling your body, it’s a whole lot better.

Ideally, you’re wearing compression garments in the daytime aka “day garments,” sleeping in night garments aka “oven mitts” as I like to call the puffy black garments that are usually wrapped around my body. And you’re using a medical-grade pump (I use the Flexitouch) where you velcro your body like the Michelin Man, turn it on for an hour and it helps move the fluid out of your body like a therapist practicing MLD.

It’s not the same, but since insurance companies don’t pay for ongoing maintenance treatments with a therapist, so once you’re released you’re expected to manage on your own.