My lymphedema started out slowly, as it does for many others. In April-June 2009, my feet were swollen for 2 1/2 months for no apparent reason. My primary care physician (PCP) diagnosed venous insufficiency which she said was due to my sitting a lot, but nothing was done about the condition and the swelling subsided. Several years later, in May 2015, I noticed that my feet and legs were swollen. I attributed the swelling to taking Trazadone to help me sleep, since swelling is one of the side effects of the drug. I stopped taking Trazadone after a month and the swelling stopped. I never notified my physician about it, although I realize now I should have. There were several other times that my feet were swollen for a few hours or a day, and I just assumed it was because of old injuries.
Then in July 2016, after 3 straight weeks of swollen feet, I realized I needed to see the PCP. I was having trouble getting my shoes on and sometimes couldn’t fasten the Velcro tabs. She recommended diuretics, but fortunately I refused them because of an allergy to sulfa. (I found out later that diuretics are bad for lymphedema.) My PCP also referred me to a vein specialist, who saw that my feet AND legs were swollen up to my knees. The vein specialist diagnosed me with lymphedema (LE), which neither I nor anyone I know had ever heard of. She also referred me for a cardiology workup to rule out the possibility that my heart could be a cause of the swelling. The vein specialist measured me for support stockings and referred me to an excellent Certified Lymphedema Therapist (CLT).
The CLT gave me exercises to do every day to move the lymph fluid, as well as exercises for my balance problems, and had me fitted in compression garments. My PCP had said to limit salt, and for 2 months I faithfully recorded my salt intake. Because I rarely went over the recommended limits and, when I did, my salt intake didn’t appear to increase my swelling, I no longer record it
My LE is primary (cause unknown, but possibly genetic), Stage I. Fortunately, I don’t have to use a pump or perform manual lymph drainage (MLD)
I wear Velcro closure compression garments (20-30 mmHg) on both legs from the knees down. My CLT said I must wear them 23/7; luckily I don’t need to switch to nighttime garments at bedtime. After a couple months of wear, I found that the liners (often called undersleeves) that are worn with Velcro closure garments were rubbing my toes so much that the toes were very irritated and almost bleeding. So I switched to open-toe liners.
I have difficulty putting on compression garments. Even something as simple as pulling apart the Velcro closures is annoyingly difficult now and a constant frustration.
Living with lymphedema is difficult–one of my issues is motivation. For example, I know it’s important to maintain skin care but for the last 8 months I haven’t been as faithful about washing my legs daily, putting lotion on, and then replacing my compression. I’ve been doing it every couple of days instead. The CLT told me to use a lotion with the correct pH, such as Eucerin or Nivea. Fortunately, I’ve never had cellulitis.
To get the best care, I believe we need to educate ourselves about this disease and advocate for ourselves as well. I’ve tried to learn as much as I can about LE, and I’m a frequent poster on Inspire.com to help and encourage others.
Before retirement, I did technical writing, and in the last year I’ve used that training to research a lot about lymphedema. On Inspire I’ve seen that many don’t have all the information they need about LE, so I post lists of resources as well as other information. I’m grateful to Belinda for starting and continuing to manage the 10 Things LE project to educate physicians and others about this disease.
Albuquerque, New Mexico