Learning About Lymphedema
Lymphedema, have you heard of this condition? I hadn’t until my best buddy told me that she is having issues with this disease. Writing this article is a challenge for me. I’m struggling because I want to write it out of a place of love and not anger. I’m angry that the medical team in the city that she is living in hasn’t had the best mindset for wellness or healing. When I lived there, I struggled to find what I needed for my healthcare, I felt like the doctors who saw me didn’t want me to get better, I felt like they just wanted their patients to get worse. Years later I am still accepting that many doctors don’t always know what to do to help chronically ill people. I want my friend to be the best version of herself and I hope that when she reads this article she will understand that is in my heart. For those of you who are struggling, I hope this article helps you to keep on going even when it feels like the therapy is not working.
I chose Lymphedema as my next research project because of my friend. I wanted to know how I could support her. Support when you are facing obstacles and challenges in illness is a valuable gift. I have been blessed with some great support mechanisms. Support is what has gotten me through the toughest of days and I wanted to be that for my friend. In order to understand that meant that I had to dig deep and face the monster that is Lymphedema. That is exactly what I did. Here is what I have learned. At the end I will list some great resource sites that I found on my quest and even some suggestions and even some fun music to help you get up and dance even if you have to dance while sitting.
Lymphedema is a collection of high-protein fluid beneath the skin, usually in the arms or legs and sometimes both and even sometimes in the private areas of the body. Lymphatic fluid in the body is usually transported out of the body by an extensive network of lymph vessels. For some reason, they do not work, it could be cancer or that has had their lymph nodes removed or it could just be the way they were born. No one knows why it starts, it just does.
The fact is, this fluid builds up and causes a lot of pain and other issues including mood disorders. It’s not comfortable, it’s ugly, and it causes a lot of angst for those suffering. It also causes a great deal of shame, because you gain a lot of weight, no matter what you do. It just doesn’t want to leave your body. How frustrating is that? Because you feel like you are rocking it one day and then the next you are swollen, hurting, and feel fatigued and not making any progress. You are eating well, you are moving your body, and you are not getting anywhere. It would make the strongest of us want to say forget this. I’m done. If you have lymphedema or just wanting to learn more, I hope you don’t, because even if you don’t see the evidence of what you are doing, you are still doing something and it is making a vast improvement on your body.
The treatment, once you get a doctor to notice and take you seriously is simple and time consuming. And at first, I bet it will drain you of a lot of energy. These include, physical therapy that includes safe exercises and Lymphatic drainage massage to drain the fluid by wearing of 40 MN HG compression garments or getting a pneumatic pump. The massage from its description seems painful, but in order to get the fluid out, you have to push hard to get it moving. It is important to have a physical therapist who knows how to do this type of massage and even show you how to do it properly. Knowledge is power in this case.
It’s important to acknowledge that exercise does not cure it or stop it from occurring. Exercise does need to be a part of a complete decongestive therapy program. Because there are precautions to exercise, first there is to not be any excessive stress exercise like running, aerobics, or anything that can tax and stress out your body. That means doing a lot of strength training, interval training, yoga and no-stress exercise needs to be the goal and not doing any long extended marathons that leave you feeling even more fatigue needs to be out the door. I want to stress this, especially if you are having this issue. Please rest for 20 to 30 minutes between the manual lymph drainage and exercising. Because that will cause symptoms to get worse and not better. And the goal is to get rid of the fluid, not have it come back.
Something that I have read on a blog of a woman who has this issue is that deep abdominal breathing needs to be included in any exercise program you decide to do both before and after exercise. I love this tid-bit because breathing is vital and without it you can’t do anything. Also, to elevate your legs a lot. I know, I know we are work alcoholics, we don’t like to rest or be still or even to sit on our buts with our feet up, watching a great movie, drinking tea or coffee, snuggling with our fur babies, or even to read a great book. Seriously, this is a doctor’s order put your feet up, enjoy a novel, or time with Jesus, or your loved one in snuggle time. If you need it said with more blunt authority. I will. Put your foot up ladies and gentlemen. Allow that lymphatic fluid to disperse throughout your body.
I am not going to pretend to know the emotional impact of facing a never ending battle, but I do have some suggestions from my own battle with Tracheal Stenosis. Here are my 5 tips.
- Have a routine for therapy, such as wearing compression garments and doing the lymphatic drainage massage is important to include. Maybe when you first get up in the morning or wear the garments while sleeping. It’s just important to do the therapy routine that you, your doctor, and physical therapy have come up to help you. If you don’t have a physical therapist, please get one. Have them show you how to do the drainage massage, that from what I am reading is the key component and the compression garments.
- Rest, remember to rest between each movement that you are doing. Since, resting will be mandatory in your everyday life. It is time to realize what your priorities are and remember it is okay to say no, or not today to those who love you. It is also okay to say this is my rest day and it was doctor ordered especially to those who have a hard time getting it.
- Communicate, let those that are not in your everyday life know that you are in physical therapy and it is taking a good portion of your time and energy. This simple answer and explanation is all that is needed. If they cannot accept this, then don’t let it wear you down. Those who love you and support you will understand and let you be still and rest.
- Pick some movements that you enjoy doing, dancing is non-stress, yoga, stretch like your cat or dog does. Just move your body. Probably be best if you start out with 5 or 10 minutes and work up. And don’t forget to rest between drainage massage and moving for 20 to 30 minutes. Please do rest, I know I’m saying this a lot, but it is a big deal. Maybe if I say it enough it will reach the brain. I love you, my dear reader and I want you to take wellness seriously. My last time saying rest. I promise.
- Finally, pick out some favorite, encouraging music to make you want to boogie to the sound of your own drum in your head. Here are some of my favorites, found on YouTube:
- Alive by Sia
- Fix My Eyes by For King & Country
- Eye On It by Toby Mac
- Dance With Me by Kelly Clarkson
- I’m Coming Out by Diana Ross
- Saved by Third Day
- Bust a Move by Young MC
- Groove Is In The Heart by Deee Lite
- Freedom by Nicole C Mullen
- I’m Still Standing by Elton John
Here are the links for where I got the information for my article.
- Lymphatic Drainage Massage @ Step Up-Speak Out
- Lymphedema Treatment & Management @ E-Medicine Medscape
- Signs and Symptoms: National Lymphedema Network
- 3 Leg Exercises for Lymphedema on YouTube
- Lymph Notes
- Lymphedema Exercises @ National Lymphedema Network
- Men & Lymphedema @ Vein Magazine
- Lymphedema @ Medicine.net
- The 3 Most Important Actions You Need To Take Daily To Drain Your Lymph Fluids @ Healthy, Wild & Free
- St George’s University: Lipoedema
Jamie Holloway lives in the Portland, Oregon area. Since October 2011 she has been sharing her Journey Toward Health and Wellness with Vasculitis through her blog at JamieChasesButterflies.com. As most of her articles will be about Men’s Health, Jamie intends to write her articles as though she was sharing important information with her brother, nephews and friends. This article was originally written for Wellness Works NW. We hope you are as inspired as we are with the raw candor Jamie uses in her writing.
For more information Contact Jamie.