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Excerpts From Stopping Restless Legs Syndrome
by Chet Cunningham

What is Restless Legs Syndrome?

Restless Legs Syndrome (RLS) is a serious physical problem that has for many years been ignored by some physicians, laughed at by others and generally relegated to insignificant status. However, it is not a condition that is "all in your mind," or a result of some active imagination. RLS is a definite neurological disorder that is finally being taken more seriously by the medical profession. Generally RLS patients will fit these guidelines:

• Most sufferers will be women.
• Usually they will be fifty years of age or older.
• Almost always there will be bothersome-but not painful-sensations in the legs that result in an immediate need to move the limbs or to walk.
• These sensations in the legs - and sometimes the arms - almost always happen when the patient is sitting or lying down.
• The problem is worse in the evenings, when the patient may be sitting for long periods or lying down.
• Sometimes there will be involuntary movement of the toes, feet or legs. This usually happens when the patient is in bed or after sitting for a long period of time.
• Most RLS victims also have PLMS, or Periodic Limb Movement during Sleep. This limb movement is usually of the legs and can happen as often as every 25 seconds. Most people with PLMS are not aware of it, but it can cause a disturbed sleep that leaves the patient groggy and sleep deprived in the morning.

RLS is hard to describe since most patients use different words and have various feelings. Some say it's a gentle pain, others an ache, some say it's a creepy-crawly feeling, itching or even like pin pricks.

When a person with RLS has the creepy-crawly feeling in the legs, moving - such as walking or other exercises - will usually make the sensation lessen or even go away.

Patients sometimes report that they feel a minor annoyance like a feather brushing their legs. This might be for only a few seconds, or increase in intensity and length until the person desperately needs to get up and walk about or dance or do some leg exercises.

People with serious RLS say that the rapid onset of the feeling is scary. They say that the speed of the need to stamp their feet or get up and dance about or even run can at times become uncontrollable. One good thing here is that just as the sensations can come on quickly, the can also vanish rapidly.

If the patient isn't aware of the RLS problems, they often blame the symptoms on other things such as eating the wrong food, using shoes that don't fit, working too hard, or even not getting enough sleep.

No accurate count has been taken, but medical experts have estimated that some twelve million Americans suffer from RLS, and many of them don't even know what the letters mean, let alone what the affliction is that they have. They also don't know that there are medical and lifestyle ways to treat RLS and usually reduce the incidence-and sometimes even put it in remission.

RLS can strike at any time. Some get it when they sit at a desk at work; this can be disruptive to say the least. Others find it hits them when they sit down to watch a favorite TV show. Some women refuse to go to the movies because they can't sit through a ninety-minute show. The solution here is to rent a movie and use your video player at home.

Travel by car, plane or train also carries long periods of sitting down. We'll cover this later in the report.

The biggest problem with RLS right now is when physicians who should know better examine a patient and ridicule her and tell her that there is really nothing wrong. Some doctors tell the patient that he or she is a hypochondriac, or the problem is caused by stress, leg cramps, allergies, manic depression, muscle tautness, even "imaginary ills made up to get attention."

Doctors who do not understand RLS should get schooled in it immediately. If they don't, increasingly informed and vocal patients are going to give them in-office training that they may not like, but certainly need.

What is PLMS?

PLMS was briefly mentioned earlier. It is the Periodic Limb Movements in Sleep. It is often confused with RLS, but at the same time is closely associated with it. Some 80% of RLS patients also have PLMS. However, many patients who have PLMS do not have RLS.

With PLMS the jerking legs may happen every twenty seconds or so during sleep. This might awaken the victim, and it might not. Often PLMS patients sleep through the movements and don't even know they have them. A bed partner who is constantly awakened by the movements, however, is acutely aware of the problem. In extreme cases this can lead to sleep deprivation for the spouse, and at the same time the affected person will be sleeping, but so groggy and un-rested in the morning that she wasn't sure how much sleep she had.

Many doctors think that PLMS may be a factor in up to 15% of those patients who complain of insomnia. The inability to get or stay asleep may be the PLMS of a partner and they are not aware of it.

Daytime sleepiness in the PLMS patient or the spouse can often be tracked back to the PLMS. The sleep - even when continual - can be "disturbed" so that a deep sleep is not possible and the restorative powers of the body through deep sleep don't work. The victim will be sleepy during the day and this can impair his or her driving or work performance.

In some cases the PLMS movements - in the legs or arms - can happen when the person is awake. When awake, the individual can walk or some other activity to reduce or stop the PLMS movements.

Sleep experts say that there may be many people out there who have PLMS, but to a gentle degree so that he or she is not even aware of it. This would be especially true of a person sleeping alone where there's no one to learn of the leg kicking.

Is there any relation, genetically or otherwise between RLS and PLMS? The researchers are not sure. However, the same medications can help to a certain degree in both situations.

Diagnosing RLS

Older patients today who have RLS can tell you horror stories about how they were misdiagnosed for many years. Until only a few years ago, there was little known or understood about RLS. Doctors had never heard of it.

Time after time, doctors would tell patients they had nothing wrong with them. All tests came back negative. They were making up the pains and problems, they were hypochondriacs, and they were playing games with the doctor's valuable time.

Until about ten years ago, few medical schools taught any courses about RLS, what it was or how to treat it. Even today older doctors have little understanding of the problem, unless they have been alert or had a patient with RLS and bothered to research it.

Today diagnosing RLS is still not much easier. There is no laboratory test to do the job. No hard and fast method that can pronounce a yes or no diagnosis.

Diagnosis is done strictly by symptoms that the patient tells the doctor. Also by a search of the patient's hereditary background to find any other family members who might have had RLS, and a check of the patient's physical condition to see if there are any underlying problems that might be contributing to the RLS.

The Restless Legs Syndrome Foundation has prepared a list for a person to go through to decide if he or she should contact a healthcare specialist to determine if there is RLS.

1) Before I fall asleep, I develop an unpleasant or creepy, crawly sensation in my legs. Sometimes, I get this same feeling in other parts of my body.

2) In order to relieve this sensation, I get up and walk, do deep knee bends, take a hot or cold bath, massage my legs, or perform some other activity.

3) I develop this unpleasant or creepy, crawly sensation when I sit for a period of time such as when watching television or a movie, riding in the car, attending the theater or my place of worship, or participating in a meeting.

4) The sensations bother me most in the evening or at night.

5) No medical test has revealed a cause for my sensations.

6) I have family members who experience these same sensations.

7) My bed partner tells me that I jerk my legs or my arms when I am asleep; sometimes I have involuntary leg jerks when I am awake.

8) I often have trouble falling asleep or staying asleep.

9) I frequently feel tired and fatigued during the day.

Join an RLS Support Group

There is nothing more comforting to an individual in pain than to talk to someone who is "wearing her shoes" - who knows the battle and has been through the fire of the situation.

That's why if you now have RLS and do not belong to a support group, you should find one. If there is not one in your area, start one.

Support groups are sprouting up all over the map. The first ones most of us remember were Alcoholics Anonymous. Since then there have been support groups for drugs and smoking and gambling and for almost every disease known to mankind. There may be one in your area for RLS.

What happens at a support group? It's a meeting in someone's home or in a hospital or public meeting room where people get together, weekly or every two weeks, and talk about their pains and their victories in the fight against RLS. Usually there is no "director," no professional - it's a one-on-one, I'll tell you my story if you tell me yours. Groups operate in all sorts of ways. Some allow an hour for testimonials and individual's stories about what is happening to them and how they are trying to stop the pain and sleeplessness.

Some then have speakers. This might be a physician who specializes in RLS. It might be a nurse or some specialists in coping with RLS who can give the group some good advice and some encouragement - and most of all fire up in them the will to keep on battling.

Some RLS groups have refreshments; some have only decaf coffee or tea and ice water or soft drinks. Sometimes they last for only an hour. Sometimes there are breaks every fifteen minutes for everyone to get up and move around to get rid of the "jitters" and the "creepy-crawly" feelings. Look at fifty RLS support groups and you'll find fifty different routines, rituals, methods and times and places of meeting.

The time, place and operation aren't important - it's the interchange, the networking, the sharing of experiences and knowing that you are not alone out there at 3 am when you need to call somebody to talk it through. Just that contact often is enough to make the support group worthwhile.

One of the big benefits of belonging to a support group is to find out that others with the same problem are getting help. If they can, you can too. It gives you a lift and a new way to look at things.

Medications come in for a lot of talk at these meetings. What works for one won't work for someone else. But if it does work for that person, it might be worth a try for you. You make a note of the name and call your doctor the next morning.

On the most basic level, attending a support group for RLS gives you the wonderful knowledge that there are others out there who suffer the same way you do, who have the aches and the night walks and the small & large panics that affect you. Just knowing that you aren't alone is one of the marvelous experiences of going to your first RLS meeting.

Doctors will be a major topic of conversation. Some might say there are only a handful of doctors in this area who have even heard of RLS. Others might simply say don't go to doctor so and so, because he gave me Advil and told me to go home and do something about my wild imagination. Others will tout their own doctors, saying that they couldn't be nicer and more sympathetic and that they really know what RLS is and have treated dozens of patients.

Often there are printed handouts for all who attend. These might come from a national organization called the Restless Legs Syndrome Foundation. You can use their handouts to read up on RLS and, when you fully understand the material, you can pass it on to your doctor who may not be as up-to-date on RLS as you are.

Nationwide Support Groups

If you're really serious about joining a support group, there is an easy way to see if there is already one in your area. The RLS Foundation has a web site, which lists most of the RLS support groups in the United States and abroad. For the very latest information you can go to the RLS website at www.rls.org and scroll down and click on "support groups" for the latest names and phone numbers and e-mail addresses.