ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient
Cramps and Spasms
Remodel or Move?
Note: Although the information here is useful for anyone with swollen feet, it is intended for people with an ongoing problem with swelling of feet and legs due to being unable to walk. If this is not your situation, please consult your doctor to determine the cause and treatment of your swelling. If there is swelling or puffiness of your fingers or around your eyes, see your doctor promptly.
The Cause of the Swelling
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 another load of oxygen. Unfortunately, the pressure generated by the heartbeat has been lost by then and the blood relies on simple back pressure to move back up to the heart. This is aided by 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 much harder to get the blood back up from the legs. It pools in the veins and causes them to get distended. Water seeps from distended veins out into the surrounding tissue and your legs and feet swell (edema). With repeated episodes of swelling, the little veins become damaged and leaky so that water seeps into the tissues even more easily. At the same time, the valves are collapsing under the heavy weight of all that blood that is pooled on top of them. That damage to the valves is
. Without the valves, the blood pools in the feet even worse than before and remaining valves are under even more pressure and more likely to fail. The circulation to the skin will be affected in time. The skin of the ankles and lower legs will be discolored (bronzing) and the skin fragile. Open sores called stasis ulcers develop. Because the blood flow to skin is poor, these ulcers are very difficult to heal.
There is no pill, procedure, or surgery that can prevent leg swelling when walking is limited. It has to be treated by the three words we hate to hear; Life Style Changes. Minimizing swelling is a do it yourself project!
Doctors aren't very good about helping with swelling. They will offer prescriptions for TED hose (somewhat helpful) and diuretics ("water pills" which should be used as a last resort). And the first thing they will say is to put your legs up to minimize the swelling but they don't tell you how to do that effectively!
Don't be fooled by an adjustable bed or hospital bed. The gizmo that lifts your legs may only lift your knees. Your feet may be left hanging down on the far side of your knees. That is actually worse for circulation to them than lying flat. Put pillows under the foot of the mattress to get the feet back up to the level of your heart.
Look at is the chairs you sit in. A recliner may seem like the ideal way to keep your feet up and swelling down but it is
There are two big problems with most recliners. First, the foot rest section is made in such a way that all the weight of your legs rests on the calves. That is really bad for circulation. Second, putting your feet up -- even way, way up -- without "unfolding" at the hips is minimally helpful as that bend interferes with the already difficult job of moving blood upward to your heart. Lift chairs are wonderful and most of them are recliners, but if you spend most of your time in a recliner, I strongly recommend that you bring the foot rest up only when you lower the back rest. Rather than spending all your time sitting up with the foot rest up, you will probably have better results if you leave the footrest down but take several breaks during the day to recline as flat as possible with the footrests up as far as possible. This self-discipline is so easy to advise but such a nuisance to stick with!
What you need is a chair that can recline fully to what is called Trendelenberg position, feet slightly higher upper body. I found some at
, a website that specializes in equipment for wheelchair users, but has a large selection of recliners. This page has a comparison chart that shows which chairs have Trendelenberg. These chairs are all recliner/lift chairs and all the pictures show them in a lift position. None show the chair reclined so I can't tell if any have the type of footrest that supports the entire leg, not just propping up the calf. There is a reference to "full chase pad" on some models and that may differentiate the better type of leg rest. If I were buying, I would check that out first. I would also find out about returns if the chair doesn't fit you!
All too often I see PALS and other people in wheelchairs whose foot drop has been allowed to progress to the point where their feet cannot rest flat on the footrest. This guarantees that the feet and lower legs will swell badly and the valves will collapse like dominoes! Don't let this happen! As soon as foot drop droops its ugly head, start using a footrest or positioning boots in bed whenever you are on your back. A footrest can be as simple as a plywood or Plexiglas between the mattress and foot board and pillows in front of it to keep the ankles at a normal angle. While up during the day, wear your AFOs (Ankle Foot Orthotics. These below the knee braces the keep the foot at a right angle to the ankle to prevent tripping.).
Once you quit walking you don't need the AFOs but you do need to keep your feet flat on your footrests. People complain that the footrests are hard and cold. Slippers solve that but aren't as good as wearing shoes for correct positioning of your feet. All too often PALS quit wearing shoes because their toes curl under when they try to get them on. Unless your spasticity is bad, here is how to keep wearing shoes.
Buy lace up shoes a full size larger than your normal and extra wide (W) or WW wide.
Remove the lining of the shoes if it is spongy or soft. The inside has to allow your foot to slide in easily.
Find socks that are thin and smooth for easy sliding. Compression hose work very well. (Don't buy the kind with open toes. They are for hospital use to check for circulation after leg surgery or a cast is first put on.)
When putting the shoes on, pull the tongue forward to loosen the laces as wide as possible. The toes will still want to curl under but unless your spasticity is bad, they should relax after a minute and slide into place. Twisting the toe of the shoe side to side will help get the toes comfortably positioned.
Whether you sit in a regular chair, recliner, or a wheel chair, it must be properly fitted to you. You need to make sure that your leg to floor/foot rest distance is short enough that there is minimal pressure at the back of the lower thigh and knee. Having your feet "dangle" is a sure-fire way to cause swelling! Put a box/platform under your feet (an old hard side suitcase worked great for me -- lightweight and had a handle) or raise your wheelchair foot rest an inch or so. The objective is to make certain there is minimal pressure on the back of your knees/thighs. If you add a ROHO or other cushion you need to adjust your platform/foot rest upward to make up for the height of the cushion. A note of caution: If your feet are too high, your weight will be shifted back on your tail bone and cause a pressure problem there. It is a balancing act to find the happy medium for footrest height!
Standard power wheelchair leg lifts are fine for adjusting your legs while sitting up, but when you lie back in your chair and raise the footrests, the footrests are suddenly too short! Your knees have to bend or you need a big pillow to get your heels above the footrests. Very inconvenient and hard to get comfortable! The solution is to order "articulating" leg rests. These lengthen as they lift so that your legs aren't scrunched even with the legs all the way up. Comfortable for elevating your feet to reduce swelling or just catching a nap!
The best treatment for leg swelling that I have found is something that I discovered entirely by accident:
More time in bed.
When my husband was working, I spent about seven hours in bed at night and then would lie back in my recliner for another two or three hours in the afternoon. Even with that, my legs were swollen by noon, miserably uncomfortable by evening and absolutely painful by bedtime. When my husband retired, I was able to go to bed at the usual time, listen to books on tape for an hour or two, and then sleep late in the morning. Instead of spending 10 hours lying with my feet up in two separate sessions, I began spending 10 hours or more in bed all at one stretch. Within a matter of days after starting this routine, I noticed that the swelling was minimal. Now I don't even have to lie down in the afternoon in order to be comfortable in the evening! I don't know if this is due to spending more time lying down at one stretch, spending all my lying down time in a bed rather than a recliner, getting more sleep, or some combination of the three. All I know is that in this has made an incredible difference for me. Not only has it made my problems with swelling minimal, I feel better in general.
Another thing that helps is
. Granny's old rocking chair served a real purpose beside putting babies to sleep! I find that the swelling is minimized on days when I am most active. (Interpret that as days when I am frequently hauled in and out of my chair and forced to stagger a few steps, whining all the way!) I guess I have some muscles left in my legs, even though I sure can't feel 'em! Even passive range of motion exercises help.
Keep cool. A few minutes of being too warm, toasting my feet by the fire, or just sitting in the summer sun is all it takes to turn my feet into balloons. (Blood vessels dilate when we are warm.) Simply keeping my legs in the shade makes a difference, but I have also been known to pour cold water over my feet on hot days when I need to be outside. Wet socks and tennis shoes are still more comfortable than that miserable burning sensation of swollen feet!
Sometimes I also have problems with a burning sensation in my feet in bed at night. It doesn't start until my feet began to warm up. It can get really bad in the middle of the night if I have the electric blanket on and my feet get really warm. That is a real nuisance because the rest of my body gets really chilled and I can't move at all if I pile on extra blankets. So, in cold weather I end up sleeping with the electric blanket on, but my feet sticking out!
For some people, this burning pain becomes severe and doesn't seem to be relieved by getting the swelling down. This might be the end result of long term or severe swelling. Some people find that aspirin (not Tylenol) helps. Do not take aspirin if you are on anticoagulants (medications to thin the blood). If burning pain is felt when swelling has not been a problem, discuss it with your neurologist.
Limiting salt intake
used to be high on the list of things to do to minimize swelling, and your doctor may suggest it, but the need for that is questioned these days. I guess it is enough to say don't over-indulge with salty foods.
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. You can ask your doctor for a prescription for these stockings, but unless you have strong hands and arms, you will need help putting them on.
Hospitals also use Sequential Compression Devices that inflate and deflate to help pump the blood along. Originally used for hospitalized people at risk of blood clots, they are now available for home use to improve blood flow. This is very effective in reducing swelling as well as the risk of blood clots in people who are not able to walk. They have some type of leg sleeves or boots or wraps that are connected to a pump that causes compression in a sequential upward direction to improve blood flow. With help from your doctor you may be able to get your insurance to cover the cost of this equipment. It is not complicated to use, but you must be very careful to make sure that it is not rubbing anywhere and causing breakdown of the skin. SCDs can be used while up in a chair which makes using them convenient.
Another option is a leg massage device. They are not medical devices and are probably less effective for swelling than compression devices but may be very helpful. They don't squeeze the blood upward, just massage the feet and legs. One big advantage is that they don't require any type of boot or wrap, just placing your legs in the massager which is easier. Massagers are generally used while up in a chair.
If you complain about swollen ankles and feet to your doctor, odds are he will whip out the old prescription pad and put you on
. I have real reservations about this because many of us are borderline dehydrated half the time anyway. (Another contributing factor for the development of blood clots.) 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 cause of the edema, poor blood flow, however. Using diuretics for swollen legs is kind of like taking a diuretic to lose weight -- sure it "works", but it doesn't really 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, diuretics need to be used because the swelling further damages the veins and valves and the situation just gets worse. But all the things described above should be implemented first before diuretics are considered.
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