Swollen Feet

One of the less than thrilling side effects of losing the ability to walk is edema. Edema, or more simply, swelling, occurs in my feet and lower legs. It happens fairly consistently each day, starting shortly after I get out of bed and lasting all day. It's worse when I don't wear socks.

In ALS patients the swelling is a result of the lack of muscle action in the legs. The upper leg muscles can be thought of as the "heart" of the lower body. There is no "up elevator" for the blood that flows from the heart into the lower body. Blood returning from the feet to the heart has to be pushed and squeezed upwards, kind of like forcing ketchup out of one of those little packets. Walking is the most common way the body accomplishes this task; the muscle contractions compress the veins and force blood uphill, against gravity, back to the heart. A series of one-way valves in the legs helps keep the blood from draining back down.

The loss of muscle movement makes it much harder for the blood to get back up my legs. So it pools in the veins. Then water seeps from these swollen veins into the tissues of my feet and legs. Eventually this swelling will damage the tissue permanently. On top of the tissue damage, the extra pressure in my legs will cause the one-way valves to fail, creating even more pressure and eventually leading to clotting. A pulmonary embolism is just another way to die; it's not likely in any case, pneumonia is far more likely to be the culprit.

In other words, besides being itchy, nasty looking, colourful in more shades of red and purple than you can imagine, more prone to surface damage and cuts, this whole process is downright dangerous. My skin feels like it is burning at times. My legs and feet are more sensitive to temperature changes or just plain hot and cold. Eventually even the skin on my legs and feet will become fragile, with a higher tendency to injury and ultimately ulceration. If it gets this bad, these open wounds won't heal because the blood flow to the skin is so poor.

Needless to say, I am not thrilled about this. It is just another complication of this nasty disease. I can help slow this side effect by keeping my legs as active as possible, by wearing socks that promote upward circulation and by elevating my feet appropriately. Of course, as with everything with this damned disease, it is not as simple as elevating them. For example a recliner with a raised foot won't do as the blood still doesn't get past my waist. The best thing for me to do is lie down with my feet slightly elevated, but not higher than my head. Feet and ankle massages help too but so far I have had no takers on that one.

It's all very complicated but then again so is almost everything about this disease.