As a former nurse, Diane Huberty knows the dangers of leg swelling. Left untreated, it can become a vicious cycle of swelling, leading to vein and valve damage, leading to more swelling.
But as a person who’s lived with ALS for almost 20 years, Huberty also had to learn about leg swelling the hard way.
"My legs are ghastly," writes Huberty of Fort Wayne, Ind., in an article about leg swelling on her Web site, Nursing Tips for Living with ALS.
"They look fine when I am lying down, but the minute I sit up they turn hideous shades of red and purple and blue and gray," she writes. "If I am not careful to prevent as much swelling as I can, they are swollen like sausages by noon and miserably uncomfortable, and absolutely painful by evening."
Leg swelling, a possible side effect of ALS inactivity, can range from minor discomfort to outright pain and, as Huberty describes, it can get worse if you don’t deal with it.
What causes leg swelling?
Unfortunately, there’s no "up elevator" in the circulatory system. Blood returning from the feet to the heart has to be pushed and squeezed along like a packet of catsup.
Walking helps this process because muscle contractions compress the veins and force blood up against gravity. A series of one-way valves along the way keeps blood from draining back down.
When walking ceases, it’s harder to get blood back up from the feet. Constant sitting also constricts blood flow by putting pressure on the veins.
As blood pools, the veins expand and water seeps out into the surrounding tissues, causing swelling, or edema. When this happens repeatedly, veins become leaky and water seeps out more easily, causing faster swelling. Meanwhile, the valves bearing the weight of the pooled blood can fail, allowing blood to drain back down. Such valve damage is permanent, leading to more circulatory problems.
Besides the unsightly swelling, edema can cause a painful burning sensation. Feet and legs can become sensitive to hot and cold temperatures, and as circulation gets worse, the skin of the legs and feet can become fragile and damaged.
But the most dangerous side effect of leg swelling is the increased risk of developing a deep venous thrombosis or blood clot that can travel to the lungs (pulmonary embolism). (See "Warning Signs" below.)
"Prevention and treatment are the same," says Kathy Peters, MDA’s ALS Health Care Services Coordinator in Shawnee Mission, Kan. "Elevate, elevate, elevate."
Raising your feet so they’re on the same level as or higher than your heart lets gravity do the work of moving blood. A tilt-in-space wheelchair and hospital bed "are probably the most comfortable and efficient for this," Peters says.
Many people with ALS use an ordinary reclining armchair to put up their feet. Huberty warns that this can actually lead to more swelling. The recliner’s footrest section is designed so that most of your leg weight rests on your calves, which can constrict the very veins you’re trying to help.
Second, putting up your feet without "unfolding" at the hips can further impede circulation. "If you spend most of your time in a recliner, I strongly recommend that you bring the footrest up only when you lower the backrest," she advises.
A diuretic, commonly prescribed to reduce swelling due to fluid retention, is "absolutely not indicated" for people with ALS, says Joan Wilson Appel, physician assistant and clinical research coordinator at the Ronny and Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston.
The problem isn’t one that diuretics will solve, and ALS patients already have trouble keeping well hydrated, she says.
Similarly, a low-salt diet won’t help swelling that’s due to inactivity, although it’s beneficial for people with hypertension or congestive heart failure.
Movement helps prevent swelling — even passive range-of-motion and stretching exercises performed by a caregiver several times a day.
"Make it part of each and every day, just like hygiene," Appel suggests. Similarly, a gentle foot massage improves circulation and reduces swelling, Peters says.
Frequent repositioning in a wheelchair or recliner is important to keeping blood in the veins flowing freely and helps prevent blood clots as well. When sitting upright, make sure your legs don’t dangle, Huberty adds. Rest your feet on a low box or footstool to take pressure off the backs of your thighs.
Compression stockings that bind the calves and feet tightly, and medical devices that inflate/deflate to squeeze legs and feet, are other ways to keep blood moving along.
Huberty has found that spending a longer stretch of time in bed helped her leg swelling immensely. When her husband’s schedule changed so that she could spend 10 unbroken hours in bed at night — as opposed to seven hours in bed and three hours in a recliner later in the day — her swelling began later in the day and was less intense.
"Now I don’t have to lie down in the afternoon in order to be comfortable in the evening," she says.