Swollen feet and ankles
by Diane Huberty, R.N., IN,U.S.A.

Swollen feet and legs are a common problem for people who have neuromuscular disorders. I have ALS and my legs and feet look fine when I am lying down, but the minute I sit up they turn shades of red, purple and grey. Some days they really swell and look like sausages by bedtime.

My nursing background taught me the physiology behind all this so I'll share what I learned.

The heart pumps blood through the arteries under high pressure. As the arteries branch out into smaller arteries and then into tiny capillaries, pressure decreases. Oxygen is removed from the blood in the capillaries and then the "used" blood flows into veins for the trip back to the lungs for re-oxygenation. Unfortunately, the pressure generated by the heartbeat has been lost by then and the blood relies on simple back pressure to move up to the heart. Muscle activity, ordinary muscle movement, "squeezes" the veins and pushes the blood along. The veins have little one-way valves all along the way that keep blood from draining backward as it is pushed upwards.

When muscle movement is lost, it becomes harder to get the blood back up from the legs. It pools in the veins causing them to get distended. Water seeps from distended veins out into the tissue and your legs and feet swell...this is called edema.

With repeated episodes of swelling, the little veins become damaged - leaky - and water seeps into the tissues even more easily. At the same time, the valves are collapsing under the heavy weight of all the blood that is pooled on top of them. That damage to the valves is permanent. Without the valves, blood pools in the feet worse than before and remaining valves are under even more pressure.

A little scarier is that the poor circulation allows the blood to pool and, when not in motion, blood tends to start to clot. A blood clot (thrombus) can form and not only further impede circulation but break loose and travel to the brain or lungs. Luckily, that doesn't seem to happen to us as often as it seems like it should, but we need to let our doctor know immediately if one leg suddenly seems much more swollen or if the swelling doesn't go down overnight, as it usually does, and especially if it is painful.
Long term, poor circulation begins to affect the skin of the legs and feet. It becomes fragile and heals very slowly when injured. Even without injury "stasis ulcers" can appear - open wounds that just won't heal because the blood flow to the skin is so poor.

Treatments for swollen legs cannot "cure" them, they can only minimize and slow the damage down.

Hospitals often use devices to improve blood flow to the feet of patients who are going to be stuck in bed for a while in order to reduce the risk of blood clots.

TED (elastic or compression) stockings are by far the most common. By simply squeezing the legs and feet a little, they help keep the veins from getting distended.
Hospitals also use types of "boots" that inflate and deflate to help pump the blood along. One study apparently showed that simple alternating pressure on the soles of the feet greatly improves flow, so some brands of boots simply apply waves of pressure to the soles.

One essential part of treatment is to lie down and elevate your legs above the level of your heart at intervals during the day. It doesn't have to be for long, 15 minutes or even five, but it does have to be in a reclining position. Putting your feet up on a footstool - even way, way up - without "unfolding" at the hips is very minimally helpful as that bend squeezes off blood flow too. And, yes, I know only too well how hard that simple bit of preventive medicine can be to carry out. Even with a push-button recliner, I cannot elevate my feet that high without assistance which is not available most of the day. Lying as far back as possible and elevating your feet as high as possible is better than nothing.

Another thing to look at is your wheelchair, if you use one. Is your wheelchair properly fitted to you or one "off the rack"? You need to make sure that your leg to footrest distance is short enough that there is minimal pressure at the back of the lower thigh and knee. Having your legs "dangle" (on any chair) can surely cause circulation problems. Try raising your footrests an inch or so. If you have added a wheelchair cushion since the footrest height was set, you need to adjust it to make up for the height of the cushion.

I have found that my recliner made things worse instead of better. All the weight of my legs was resting on the calves and that really cut off circulation. I have added a strip of foam pillow across the footrest right under my ankles to take some of the weight off my calves.

Another thing that helps is muscle activity. Granny's old rocking chair served a real purpose beside putting babies to sleep! I find that on days when I am most active the swelling is minimized. I guess I have some muscle left in my legs, even though I sure can't feel 'em!

Limiting salt intake used to be high on the list of things to do to minimize swelling, but the need for that is questioned these days. No one should overindulge on salty foods.
If you complain about swollen ankles and feet to your doctor, he will likely put you on diuretics. I have real reservations about this simply because I am very much aware that many of us are borderline dehydrated half the time anyway. It gets hard to reach a drink, or hard to swallow, or it is simply too hard to get to the bathroom, so we don't drink as much as we should. Diuretics cause your kidneys to remove more water from your blood stream. The "thicker" blood is then able to "sponge up" more water on its travels through the body so it does reduce the edema. It does nothing about the real problem of poor blood flow. Using diuretics for swollen legs is akin to taking a diuretic to lose weight- it works, but doesn't solve the problem.

I certainly won't say diuretics should never be used ... if nothing else works well enough to keep the swelling under control, they need to be used because the swelling further damages the veins and valves and the situation just gets worse. But the other things described above should be implemented first and diuretics last.

Dr. Greg Carter, one of our CMT advisors, adds the following:
People with CMT have swelling in their feet and ankles because they don't have the normal muscle strength and activity in the legs that helps pump out the venous blood and lymphatic fluids back towards the heart. This is common in many neuromuscular disorders.

Breathing and/or heart problems can definitely cause swelling of the feet and ankles, and can be an early sign of heart failure.

People with CMT have to be particulary careful because swollen feet and legs can lead to skin breakdown and ulcers. These ulcers may get infected and sometimes lead to loss of the foot or leg (ie, if they get gangrene). CMT people are already prone to neuropathic ulcers so they are at very high risk. CMT folks should treat their feet just like diabetics do: daily inspection; gentle soak and cleansing; emollient creams to keep the skin supple; proper foot- wear and correctly fitted braces/orthotics (CMT people should always use custom-fitted braces/orthotics, not off-the-shelf models).
TED hose are OK as long as they are taken off for part of the day and the skin thoroughly inspected.

Further, CMT people should not smoke because this can lead to peripheral vascular disease (hardening/clogging of the arteries) which worsens the situation.