The biggest questions I now receive is “How do you maintain reduction? What are your Do’s and Don’ts?”
When you become a patient of a Certified Lymphedema Therapist (CLT), one of the first things they hand you, or should (EMPHASIS ON SHOULD) is a few handouts of the Do’s and Don’ts for lifelong Lymphedema Management. In my case, it was for the lower extremity.
For me, maintaining the reduction of Lymphedema swelling is comprised of adherence to these basic principles combined with a little common sense and listening to your own unique body. In other words, it’s a mixed approach and it’s very personal and individualized. I see you rolling your eyes. Just bear with me.
What works for one person may not work for another, due to innumerous factors. Anything from LE severity, stage, age, weight, or other general health conditions. What matters most is consistency and tenacity. It took me six whole months to fit into shoes. That’s roughly 180 days! Do you know how many times I wanted to quit? How many times I had a few choice words for my compression and MLD and the whole caboodle? Countless!
Take your routine very seriously and do what works for you based on your doctor’s advice. Never do anything without consulting your doctor. My endocrine doctor has been my doctor for almost 20 years. I have absolutely no idea what I am going to do if he ever decides to retire. I will probably freak out.
I’ll be completely candid. The leaflet packet I was handed was about 10 pages or more. I groaned when I heard, “Here’s your homework. Read it and commit it to memory.” As I briefly scanned the pages, all that was highlighted in my mind was “Don’t do this and don’t do that.”
Here is where I make a sing-song whiney voice like a 5 year-old. Don’t sit too long. Don’t stand too long. Don’t cross your legs. Don’t dangle your legs off a chair. Don’t sit in the sun. Don’t use saunas or hot tubs. Don’t ice or heat your legs. Don’t gain weight. Don’t get bit by bugs. Don’t go barefoot. Don’t get cut. Don’t eat sodium. Don’t, don’t, don’t…….
I drove home thinking, “Well, what can I do? I can barely drive with these huge bandages on my legs in these awkward post-op shoes. Just wrap me in bubble wrap now!”
Weeks later it came down to the inevitable. I was discharged from CDT, and on my own with Lymphedema. Yes, time to sink or swim. I knew that if I didn’t comply I was going to end up right back at square one. I wanted the score to be, Veronica 1 Lymphedema 0.
Finding the right Lymphedema Products
Two game changers happened for me right about the time I was discharged. I found compression that I liked and fit me correctly, and I found a nighttime compression garment which replaced having to wrap at night for bedtime. I cried on the floor when I heard I needed nighttime compression, which meant Compression 23/7. Don’t worry, I waited until I was home alone. I can’t stand socks! My therapist put me in touch with the right products that fit my needs and my budget.
Finding The Lymphedema Guru
I found the Lymphedema Guru by accident on social media, and quickly became a huge fan of Joachim E. Zuther’s work at http://www.lymphedemablog.com which lists the Do’s and Don’ts for Lymphedema of the Leg in a clear, concise manner. At least to me, it was finally something I could save on my phone and reference quickly when needed!
Finding the Connection between Inflammation and Weight Gain
Last year I worked with a registered dietitian to initially help me with meal planning. All I really wanted was some help getting started. Instead she gave me the biggest lesson of my life. After I told her all my health problems, she said all of your conditions have one thing in common: Inflammation. She recommended a food sensitivity test.
My test results were as follows: Bay Leaf, Pinto Bean, Cauliflower, Cocoa, Cinnamon, Egg White, Egg Yolk, Gluten, Grapefruit, Black Pepper, Safflower, Black Tea, Tomato, Turkey, Watermelon, Wheat, and Yeast, Bakers & Brewers. I don’t break out in hives, but I do feel remarkably better when I avoid these foods. Each person’s test results are unique to that individual. After the fact, I found out that this test is very controversial. All I know is it helped me! I have dropped 35 lbs to date. You can always do a food diary and record your swelling responses to food. This is an interesting article on the Weight Gain Inflammation Connection.
Stay Lymphie Strong Do’s
As humans we tend to fall into routines. Armed with my new products and my lists, I clapped my hands together and rubbed them together, ready to take on the new challenge.
- Mornings consist of removing the nighttime compression garment first thing. I still have trouble with walking. It feels like I am walking on shattered glass or pins and needles, so I take it slow. I stretch out my legs and quickly do the LE exercises. Toe stretches, ankle point and flex, ankles left to right, ankle rolls, and knees to chest – all 3 sets of 10.
- Olympic action into compression stockings is next. If you have ever had to put them on, you know what I’m talking about.
- Breakfast, lunch, and dinner normally consists of something not on my Foods to Avoid list. I pair a protein with a carbohydrate. No egg whites or egg yolks, and no wheat toast for breakfast. Usually a plant-based protein shake that is dairy and gluten-free is my breakfast or snack. Almond milk is my friend. Yes, I sound like a health food junkie or foodie snob. (And yes, I’d much rather have breakfast tacos or French toast!) So what. It’s my legs, not anybody else’s. I buy my food at the local supermarket, not any specialty grocery store. In the beginning I did, but decided it was a waste of money. I still go back for some specific things I like. This past August I added a greens protein smoothie from my gym café that has turmeric and bromelain in it. I love it! I usually meal prep on Sundays, which often includes making mason jar salads for myself to have them ready to go for the week.
- Water is very important. I’m always drinking water. Sometimes I make infused waters with different fruits just to change it up. One thing I’m finding tough to give up is coffee. Need my daily latte. Sigh. I’m working on it.
- Ginger and peppermint teas are stockpiled.
- Skin care is a daily routine. I check my skin for cuts or breaks all over, not just the legs. I even check my gums. Dental care is very important. An infection can come from anywhere. Used to be faithful to a lotion product recommended for LE for years. After doing research, I decided to switch to coconut oil as moisturizer for my skin. I also switched to aluminum free deodorant. All of this was cleared by my doctor first. It seems to be helping, because I had a swollen armpit and now that has even reduced.
- Speaking of dental care, I get antibiotics every time I get my teeth cleaned or have any dental work done. My Dad swears by this.
- Wear compression every day. Yes, I wear it faithfully, and so does my Dad. Even in 110 F Texas heat and especially while exercising. Again, no going back to square one.
- My weekly exercise routine is 30 min jog/walk followed by 30 minutes upper strength training 3x a week. I also do Hydro Training in the pool 2x a week with water weights and wearing water shoes. This is not water aerobics. It is more like aqua boot camp. I pee like crazy after water exercise. It really does detoxify your lymph system. I’m not a swimsuit model, but I don’t care! Virtually everyone in the class has some sort of issue, whether it’s a bad back, bad knees, or whatever. Hey, I have bad lymph vessels. Note: This routine was gradually built up over time. Listen to your body and take precautions.
- I use Lymphedema gadgets like a leg elevator pillow and a durable medical footrest. These things make LE life easier. Wish list – one of those divided electric beds that elevate your head or feet. Santa please! I’m green with envy.
- I’m very picky about where I sit. No legs dangling where the lymph node behind my knee will be crushed. Elevate, elevate, elevate. Yes, it’s rude to put your feet up on furniture, especially in public. I do it anyway. If it’s you or my legs, my legs will win. Sorry!
- Sleep is important to me. Sometimes it’s hard because I get a burning feeling in my legs that has been discussed in some LE forums. Not sure what to make of it, but I do get sleep. DO NOT DISTURB.
- I am striving towards my ideal weight.
- Last, but not least, I do Manual Lymphatic Drainage (MLD) every single day. No exceptions. Sometimes it’s the way I was taught by my therapist, sometimes dry brushing, sometimes You Tube videos. I do it differently to break up the monotony of having to do it.
Stay Lymphie Strong Don’ts
- I avoid mosquitoes like the plague, which means I don’t spend much time outside. I’m okay when the mosquitoes die, and we head into fall and winter seasons. I love temps in the 70’s. My family will say I’m antisocial until I show them the huge welts from the bites, even through compression garments. I’m scared of cellulitis. Nobody else will get bit but me. Lately coconut oil has been helping, but I don’t know if that’s purely a placebo effect. I know I’m not dousing myself with insect repellant as much as I used to.
- I avoid pets. My one and only case of cellulitis was from a cat scratch, and I was traumatized for life. I don’t want 104 fever and four days in the hospital again. Fur babies are lovely and wonderful. We have a dog, but my husband and son are responsible for her.
- I avoid heat in all forms. No hot showers, baths, saunas, hot tubs, or direct sunlight. Heat is very bad for Lymphedema. Sometimes I take an Epsom salt lavender bath after a workout. I pour it in and let it dissolve. When the water is already cooled down, I get in. At the beach, I wear an old pair of compression in the sand. If I get in the water, I take them off and put on quality water shoes to avoid cuts from seashells or potential glass. You never know.
- I avoid long road trips. If I have to take them, I stop to exercise my legs, or I exercise while seated by doing ankle rolls, etc. For air travel, I wear extra compression on the flight. I actually wear my nighttime compression garment. I don’t care about the stares, and I even request medical pre-boarding to boot!
- I try not to stress. Stress has been reduced in my life big time. If I get worked up over something, it will only cause swelling. Stress releases cortisol in your body which can cause inflammation. I make a point to read, pray, meditate, talk with a friend, pray with a friend, vent, watch a funny movie, or just walk away. It’s just not worth it.
- I don’t sit very long. I setup alarms on my phone to remind me to get up and walk around to avoid sitting too long. If I am attending a work conference, I get up to stand in the back. Most people assume it’s back problems. I don’t offer information. I use a headset for conference calls to walk around while I’m talking.
- I avoid alcohol and second-hand smoking environments. I don’t personally smoke cigarettes.
See before picture here. My legs were swollen up to both knees on both legs at that point. Now I can see my bones and even some shin muscles.
All this being said, that is my general LE routine. Yes, I do have the occasional beer or cocktail. I love Mexican food. Yes, I may say screw gluten-free pizza and give me a slice of the real stuff. I might go to a wedding, graduation, or birthday party and have cake and Texas BBQ and enjoy myself. These things are done very seldom. However, I know I will pay dearly the next day. While it may not be noticeable to others, I will feel the skin tightening and the paresthesia (tingling pins and needles feeling) up and down my legs. Sometimes it’s a shooting pain. I might feel completely drained. Then I’m stuck on the leg elevator pillow, which is time out for being bad.
In conclusion, it is my sincere hope that you have found at least some of this information useful. Remember, this is not medical advice. It is not a cure. I am not cured and manage every single day. The key to your individual maintenance success is up to you, the individual. Your body is yours, and only you can say with 100% certainty what works and what does not work for you personally in terms of Lymphedema management. Gather information and research from as many sources as possible and make your own decisions.
Before I close, I would like to thank my husband and my son for putting up with all of the LE Do’s and Don’ts that I have personally crafted for myself. It affects them too, and I’m sincerely appreciative for all of their love and support.
I will be touching base with my Dad in the next few weeks, and I am hoping to interview him via video. This way we can have a male perspective, and obviously he’s had LE twice as long as me. He may take me to school on a few things. Ha!
Stay tuned and Stay Lymphie Strong!