What are the Restless Legs Syndrome (RLS) and PLMD (Periodic Limb Movement Disorder) ?

This is a chronic condition which occurs in 5-12% of the population.  RLS has probably a disease for thousands of years, but it was only first described in the English literature in 1672 by the physician, Sir Thomas Willis.  Oppenheim, in 1923, described the disease as a neurological disorder.  Dr. Ekbom, a Swedish neurologist, described the condition more fully in1944. The next year, in 1945, he named the disease, Restless Legs Syndrome. Dr. Symonds, in 1953, used the term, Nocturnal Myoclonus, to describe the leg jerks that occur at night. 

People with this problem complain of discomfort in their legs (sometimes even arms) that is difficult to describe (often described as "ants crawling up the insides of my legs") and control. The discomfort makes them want to move their legs ( to get up and walk or often even resorting to vigorous exercise) to gain relief. Their legs feel "restless" and this may be associated with other unpleasant sensations including "pins and needles", muscle twitching, or aching. These symptoms generally occur when the patient is sitting quietly or lying in bed. For a good description of what it is like to be a patient with RLS and a good discussion of the symptoms read the letter from an actual patient with RLS. It can be a significant cause of sleep disturbance (often causing severe insomnia) in most people afflicted with the disorder.

RLS occurs most commonly in middle age and gets worse as one gets older.  However, a large portion of patients (up to 43%) may have onset of the disease before age 20 (and often as a very young child). A family history is found in over 60% of RLS cases and new evidence point out possible linkage to chromosomes 2, 9, 12, 14, 19 and 20.

Eighty percent or more of these people may have an associated disorder called PLMD - Periodic Leg Movement Disorder (also known by the older name as Nocturnal Myoclonus). This condition causes leg jerks from uncontrolled contractions of the hip, thigh and calf muscles of one or both legs. During the leg jerks, the hip, knee and ankle move in flexion and the toes extend.  These leg jerks can be very small (barely perceptible twitches) to gross large kicks that may even propel the patient's spouse out of bed. The leg jerks may last 1/2 - 5 seconds and recur every 20-40 seconds.

This condition may also cause significant sleep disturbances including insomnia or excessive daytime sleepiness (by causing micro-arousals not noticed by the patient all night). However, some sleep specialists do not believe that PLMD really causes enough of a sleep disorder to result in daytime sleepiness or should be treated. There is little research on this topic which has resulted in this controversy about the importance of PLMD.

What causes RLS?  At this time, we do not know.  We are not even sure from where in the body that the RLS impulses are generated. One study (Annals of Neurology, May 1997, 41:5, pages 639-45) found that the cerebellum and thalamus were activated during RLS symptoms.  Other studies have found conflicting results. Clearly, more research is definitely needed to more fully understand this disorder

Treatment of RLS (for more detail, see RLS/PLMD Treatment Page)

Restless Legs Syndrome can be a very bothersome and persistent problem. It can be very frustrating, especially when not understood by friends, family and even the patient's own doctors (you can read an excellent essay, My LEG acy, written by Elizabeth Tunison, describing this frustration). Many different remedies exist, including drug therapy. Most people afflicted with this disorder can achieve improvement with treatment with the aid of an understanding and knowledgeable doctor. Please check with your physician or sleep disorders specialist if you feel that you may have this condition and you may be very surprised and gratified to see how much your RLS condition can be improved.

There are several classes of medication that may be helpful in RLS. Benzodiazepines, such as Klonopin, Xanax, Restoril, Halcion, Prosom, Doral, Valium, and even the non-Benzodiazepine sleeping pills, Ambien or   Sonata may help if taken at bedtime. Klonopin may cause daytime sleepiness, so ask your physician to try one of the other medications in this class if you are experiencing daytime problems with Klonopin (which is often the first choice of physicians to treat RLS).

Anti-Parkinson's disease medications such as Requip, Mirapex, Sinemet, Permax and Parlodel, may be very effective in controlling both nighttime and daytime RLS problems. Sinemet is often the first choice of the Parkinson's disease medication, but it should probably be reserved for mild RLS as problems with rebound and augmentation may occur. Mirapex and Requip are the best medications for daily RLS (and approved by the FDA), having few side effects and can control most RLS patients.

The next major class of medication is the narcotic (opioid) group which include Darvon, Codeine, Vicodin, Percodan, Methadone, Talwin, and even Morphine. There is always significant concern that this class of medication may result in addiction, but if taken just to relieve symptoms generally will not cause addiction, especially if regular drug holidays are taken (stay off the medication for a few days every few weeks). Ultram, a new non-narcotic pain reliever with less potential for addiction, may work well for RLS.

A fourth class which have recently been found to be effective are the anti-seizure medications such as Neurontin (very good results with this one!), Tegretol, Depakote, and Mysoline.

If you have tried all the above medications and not gotten relief there are three other classes of medications (which are not as consistently effective) to try. High blood pressure pills such as Catapress (Clonidine), Inderal, and Cardizem have been helpful in selected cases. Antidepressants such as Prozac, Zoloft, Tofranil, Desyrel, and Elavil have been reported to be helpful in selected cases, but be careful as this class of pills can make RLS worse! The last class is the Multiple Sclerosis medication Lioresal (Baclofen) which has helped some patients.

Many non-medication treatments have been described including moving the effected limbs, acupuncture, chiropractic therapy, biofeedback, stress/relaxation therapy, doing math/computer work, etc. Check out our RLS Patient Letters Pages to see other medication and non-medication treatments e-mailed to us by RLS patients worldwide.

Also check out our new section called the The RLS/PLMD Treatment Page - Comprehensive Review of Medications use for Treating RLS and PLMD. It goes over all the RLS and PLMD drugs one by one with more details about the individual drugs.

The RLS support groups have been very helpful in getting afflicted people together to discuss their problems and find out more about this condition and how to deal with with their persistent discomfort.