Flattops: Articles: Lymphedema


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    Lymphedema is not highly talked about by the medical community, or even online. Or, anywhere! In fact, it's seen as a misspelled word if you type it in any type of spell check. So, you're not alone if you feel like you can't find any decent information on it. Two articles appear on this page by people who have been impacted by it. Lymphedema is not highly understood in the medical community, so please take these articles not as suggestions, but as information on what worked in the experience of those who wrote the articles.

    Lymphedema: What Has Worked for Me

    by Sheri

    After numerous surgeries last year, including a hysterectomy, bilateral mastectomy and bilateral sentinel node biopsy, I developed bilateral arm lymphedema, in addition to truncal swelling, as well as some swelling in my legs and feet. I was referred to a lymphedema therapist and was determined to do everything I could to overcome my lymphedema.

    I am writing this in the hope that reading what helped me might in turn aid others in developing their own plan to help themselves.

    I am not a medical professional. I don't know if the things that help me will help you, but I encourage you to try to understand what aggravates or helps your lymphedema and set your own course of action.

    Here is what helped me:

    1) Daily Manual Lymph Drainage.

    2) Daily arm lymphedema exercises.

    3) Daily walk (not in the heat--if it is hot I walk in an air conditioned mall or large store, about 1 mile).

    4) Lost weight--Even though I was not heavy (5 ft. 5 inches and weighed 125 pounds), I lost 13 pounds. Bringing my weight to 112 pounds helped my lymphedema.

    5) Diet--no salt, low sodium, high fiber, low fat, low calorie, no alcohol, no caffeine (which means no coffee or chocolate--ugh!), limited meat. Foods that help my lymphedema include Brazil nuts (one per day for the selenium), pineapple, red grapefruit, egg whites.

    My lymphedema therapist told me that, in addition to one's weight, what one eats (and doesn't eat) is quite important. I was told that one patient, who was not making progress in reducing her arm swelling despite treatment, was instructed to write down everything she eats each day. The list was then critiqued, using the guidelines I mentioned above (no salt, low fat, no alcohol, etc.). The patient changed her diet, and with no change in treatment, her arm swelling reduced.

    LE seems to be different for different people, but my swelling (and the discomfort LE can cause) is highly influenced by what and how much I eat. I seem to do better eating more frequent, smaller meals instead of large meals. I feel best mostly eating vegetables, fruits, low and non-fat dairy, and some whole grains, with a very limited amount of (relatively lean) meat.

    6) 8 glasses of water each day.

    7) Bellisse compression vest daily until my truncal swelling diminished. Now I rarely use the Bellisse (only when I notice the beginnings of truncal swelling again).

    8) Avoid or limit anything that is bad for my lymphedema. For example, repetitive arm movements, lifting heavy things.

    9) Avoid heat and hot things. No hot showers, just lukewarm or cool. Let my food cool a bit before I eat it. Wear layered cotton clothing, so as not to overheat. Eat frozen fruit to cool off in the summer (frozen grapes and pineapple are delicious).

    10) Due to the lymphedema, I was repeatedly getting infections on my fingertips, so I am very careful what I touch and try not to touch dirty things. For example, I buy already cleaned vegetables and fruit. I use disposable gloves more.

    11) I use Eucerin Daily Replenishing Lotion on my skin when it is dry, especially my fingertips.

    12) Rebounding was a huge help and particularly was great in stopping the pain. I had read that it is important to use a quality rebounder, so I did some research on the Internet and (after obtaining my doctor's approval) bought a half fold Cellerciser rebounder with balance bar. I was told to start off slowly --one minute a day doing the "health bounce" (feet don't leave the mat)--then slowly work up to more time. After about a month of rebounding, I went to about three minutes, five times per day.

    13) Dry myself with towels in the direction I want the lymph to flow.

    14) Pay attention to what helps or hurts my lymphedema and adapt my actions accordingly.

    15) Wore compression sleeves and gloves. Now I usually only need my right sleeve and glove when doing my arm exercises. My left sleeve and glove I need to wear a bit more than that, but am now free of compression garments most of the day.

    16) Five to ten deep "belly" breaths, several times throughout the day--taught to me by my lymphedema therapist.

    17) Low level laser treatments (LTU-904 cold therapeutic laser). Since beginning the laser treatments, I have significantly less discomfort from the lymphedema, and I virtually stopped getting infections in my finger tips (which had been a repeated problem), and a relatively hard part in my forearm is getting softer. The low level laser has definitely improved my quality of life.

    18) Tried to maintain an upbeat, positive attitude. My husband told me every day that I would get better, and that was quite encouraging. lymphedema After 10 months of fighting LE, almost all of my swelling is gone. The pain is gone, but I still have some discomfort. I want to fully recover and will keep up my efforts.

    I hope that you overcome your lymphedema, and wish you the best of luck!

    Lymphedema: What Worked for My Mom

    by Melissa

    My mother suffered from lymphedema in her left arm for about thirty years, before she eventually passed away from cancer. She told me many times that nothing bothered her as much about her cancer experience as the lymphedema. Not even the mastectomies.

    I don't say this to discourage, but just to hopefully let you know that it is something significant, if you have it. I'm sure you may feel alone, as well. It's a condition that isn't talked about much, even online . . . and that's saying something!

    She developed lymphedema as a result of having lymph nodes removed during a mastectomy. Not as many nodes may be removed, so it's hopefully not as common as back when she got it. It's also a very individual thing. Just because a node is removed does not mean a person will get lymphedema.

    She tried just about everything to help it, from a very loud and large pump machine (no longer recommended) used at night to therapeutic massage to wrapping. She did find some success in wrapping her arm, though any results were short-term.

    Here are three things that helped her:

    * She always wore a prescription compression sleeve, even at night. This helped keep the swelling under control. It was important for her to replace them, because they loosened over time, and once they loosened her arm would swell up more. Though her hand was also swollen, she was able to get by with wearing a hand compression glove only occasionally. She would often manually press the lymph fluid out of her hand while sitting.

    * Because her lymph system was compromised, she was highly susceptible to developing cellulitis. Cellulitis is a dangerous condition that can go septic, and she was once hospitalized for this. She regularly looked under the sleeve she wore to check for any red spots or "hot" feelings, which could indicate the beginnings of an infection. These infections are important to find right at the beginning.

    * She proactively always had an antibiotic on hand. Though this takes special permission and help from your doctor, since they can be hesitant to prescribe unneeded medications, she was able to do this and thus help keep it under control. She would even pack the prescription bottle with her for trips. She could just call in a new prescription when needed, and didn't have to regularly go to the hospital or doctor's office for diagnosis.

    One of the things I noticed the most with my mom was an embarrassment about her condition. So many times when she went out, people exclaimed, "Oh, my goodness! Did you break your arm?" I don't know how a thin, skintone compression sleeve looks like a cast, but people were never hesitant to bring attention to it. I saw her always wearing long sleeves--even in the extreme heat of summer--and wished she would have the freedom to just let that sleeve show. She was beautiful the way she was, lymphedema and all.

    This website is for personal support information only. Nothing should be construed as medical advice. Please speak to your medical professional for permission and instructions for how to treat lymphedema. Articles by Sheri, 2007; and Melissa, 2013.