Re: Really good stuff from WeMove Site!

February 22, 1999

Hi Gang,

Found the below good stuff at the WeMove -- terrific site!

WeMove: http://www.wemove.org/

They have a post list to keep you informed on the latest of happenings in

movement disorders also. My mother also has Parkinson's and I have found being

on the post list, free of charge, useful. Only send a post once a week.

Knowledge will hopefully set you free one day. The better informed you are,

the greater the hope of a good nights sleep; consistently!

Barbara

Restless Legs Syndrome (RLS) is a movement disorder characterized by unusual

sensations that occur typically deep within the legs, occasionally in the arms

and infrequently in other body parts. These sensations compel the sufferer to

move the affected extremity to achieve relief. Because RLS is worse during

the evening and at night, it can lead to severe insomnia and excessive daytime

sleepiness.

RLS can be idiopathic (without a known cause) or can be related to an

underlying condition such as iron deficiency, renal failure or peripheral

neuropathy. RLS may also occur during pregnancy, but the symptoms generally

resolve with delivery.

A related disorder, periodic limb movements in sleep (PLMS) or periodic limb

movement disorder (PLMD), is characterized by episodes of jerking of the limbs

during sleep and sometimes while awake.

FROM WE MOVE:

What is restless legs syndrome?

Restless legs syndrome (RLS) is a neurologic movement disorder characterized

by sensory and motor abnormalities that are distinctive but frequently

misdiagnosed. Some reports indicate that an accurate diagnosis takes a mean of

two years after patients initially seek medical advice regarding their

symptoms. RLS may affect up to 12 million people in the United States.

What are the symptoms of restless legs syndrome?

In 1995, the International Restless Legs Syndrome Study Group, comprising 28

investigators from seven countries, defined the four primary features of RLS.

1. The desire to move the legs in association with unusual or uncomfortable

sensations (paresthesias/dysesthesias) deep within the legs, usually in the

calves; in some cases, the arms may also be affected. These sensations are

described as creeping, burning, tingling, cramping, aching, itching, pulling,

crawling, or " water flowing " deep within the affected extremities. Patients

with mild or moderate RLS characterize these sensations as uncomfortable; for

the most part, they are not perceived as painful. In rare cases, unusual

sensations occur in the feet. In even rarer cases, these sensations may also

be present in the trunk or genital area. These feelings may move from one part

of the body to another or may affect only one side of the body (asymmetric).

For example, one leg may have unusual sensations whereas the other does not.

2. Motor restlessness in response to or in an effort to relieve unusual

sensations or discomfort. To the extent that a patient feels a compelling urge

to move, these movements may be termed involuntary; however, in so far as a

patient chooses which type of movement to perform, these movements are

voluntary. Such movements are often repetitive and may include pacing,

rocking, shaking, tossing and turning in bed, stretching, bending, marching in

place, or engaging in certain repetitive exercises, such as riding an exercise

bike or walking on a treadmill. Many individuals develop their own routine of

stereotypical movements and tend to repeat these same movements in response to

uncomfortable sensations.

3. Symptoms become obvious or worse while at rest (during periods of

inactivity or relaxation) and may be temporarily diminished by voluntary

movements of the affected limb(s). This restlessness is sometimes mistaken as

" fidgetiness " or " nervousness. " The unusual sensations and motor restlessness

associated with RLS may also be provoked by prolonged periods of inactivity

such as occurs during travel in a plane, train, or car.

4. Symptoms occur most frequently during the evening or the early part of the

night (e.g., between 6 p.m. and 4 a.m.). Individuals with even the most severe

RLS symptoms typically obtain some measure of relief during the early morning

hours. Worsening of symptoms while at rest and at nighttime may be a very

distinctive pattern that is unique to restless legs syndrome.

What Causes Restless Legs Syndrome?

The exact cause of restless legs syndrome is not known. The idiopathic (or

primary) form of the disease seems to occur sporadically for unknown reasons.

Again, a family history of RLS is reported in many of these patients,

suggesting a genetic component to the disease. Documented cases of parent-to-

child transmission suggest that, in familial cases, RLS may be inherited as an

autosomal dominant trait.

Secondary (or symptomatic) RLS occurs as a result of an underlying medical

condition or in association with the use of certain drugs. For example, some

conditions that may cause secondary RLS include kidney failure, low levels of

iron, anemia, pregnancy, and peripheral neuropathy.

The symptoms of RLS may begin at any stage of life, including childhood,

adolescence, or adulthood; however, the disease is more common with increasing

age. Children with RLS are often misdiagnosed with " growing pains, " anxiety

disorders, or attention-deficit hyperactivity disorder (ADHD). Forty percent

of those diagnosed with RLS during adulthood report having experienced

symptoms before the age of 20 years. RLS affects both males and females;

however, females often seem to be more severely affected and thus may be more

likely to seek medical attention leading to a diagnosis of RLS. About 42% of

patients initially experience symptoms on one side of the body, and

approximately 25% report unusual sensations and motor restlessness in their

arms. A large majority (about 94%) experience associated sleep disturbance.

Is it possible that another medical problem may cause RLS?

Before recommending or prescribing any treatments, physicians assess patients

to exclude any underlying disorders, conditions, or other factors that may be

responsible for causing or aggravating their RLS. Secondary causes may be

suspected when RLS symptoms are brief or have recently become more severe.

Symptomatic restless legs syndrome may occur secondary to iron deficiency,

anemia, folate deficiency, uremia, thyroid problems, diabetes, or peripheral

neuropathy. In such cases, appropriate treatment of the underlying condition

may eliminate or alleviate RLS symptoms. Such treatments may include the use

of iron supplements for iron deficiency, medications that lower blood sugar

levels for underlying diabetes mellitus, etc. Appropriate supplementation with

B vitamins, vitamin C, vitamin E, folate, or magnesium may help ease symptoms

even if a specific deficiency has not been determined.

Are there medications that may cause secondary RLS?

The use of certain prescription or over-the-counter medications may cause or

aggravate restless legs syndrome. Therefore, before recommending or

prescribing any specific treatments, physicians may ask for detailed

information about the patient's current regimen of medications. If physicians

suspect that specific over-the-counter medications are contributing to the

occurrence of RLS, they may suggest the use of alternative medications. If

they suspect that certain necessary prescription medications are causing or

exacerbating RLS symptoms, physicians may work in coordination with a

patient's other physicians to ensure appropriate, comprehensive treatment of

any disorders or conditions that are present. The potentially offending

medication may be replaced with another drug

Medications that may cause or aggravate RLS symptoms include many antinausea

drugs, such as Compazine® or Reglan®; certain medications that are

administered to help prevent or control seizures, such as phenytoin;

droperidol; particular antipsychotic drugs that produce tranquilizing effects,

such as haloperidol and phenothiazine derivatives; and some cold and allergy

medications. In addition, some rare instances have been reported where

individuals who take certain drugs to treat depression (e.g., tricyclic

antidepressants, selective serotonin reuptake inhibitors [sSRIs]) may

experience some improvement in RLS symptoms; however, for the most part, such

medications typically aggravate the symptoms of RLS.

Is there a theory as to what is happening in the body to produce the symptoms

of RLS?

The results of functional magnetic resonance imaging (MRI) and

electrophysiologic studies suggest that RLS and associated PLMS may occur as

the result of a central nervous system (CNS) abnormality originating deep in

the brain (subcortical structures). There is also some evidence of

dopaminergic dysfunction. More specifically, it has been proposed that RLS may

be due to decreased dopaminergic activity in the central nervous system (CNS)

at the subcortical level or perhaps at the level of the spinal cord. Recent

research studies showed a disinhibition of the flexor reflex during sleep in

people with RLS. Additionally, the beneficial effects of treatment with

opioids suggest possible involvement of the endogenous opiate system, although

this may be an indirect effect of the opiate system on the dopaminergic

system.

How is Restless Legs Syndrome Diagnosed?

The diagnosis of RLS is based upon a thorough medical and neurologic

evaluation as well as a detailed patient history. Some physicians may use a

clinical assessment scale to aid in the diagnosis of RLS and help to determine

disease severity. Diagnostic indicators include the following:

•Desire to move the limbs usually in association with

paresthesias/dysesthesias. •Motor restlessness. •Symptoms are worse or

exclusively present at rest (i.e. lying, sitting) with at least partial and

temporary relief by activity. •Symptoms are worse in the evening/night.

Are there other factors that physicians consider when confirming a diagnosis

of RLS?

Additional features that may suggest RLS may include the following:

•Difficulty initiating and maintaining sleep. •Involuntary movements of the

legs (or arms) that occur during sleep or while at rest. •Absence of

associated neurologic findings as revealed during a complete neurologic

evaluation. Most cases of RLS are idiopathic and, upon examination, there are

typically no unusual neurologic findings. However, when RLS occurs in

association with other disorders, such as diabetes or peripheral neuropathy,

etc., it is possible that abnormal neurologic findings may be discovered

during the course of evaluation. These findings may include loss of tendon

reflexes, an abnormal electrical impulse conduction study (electromyography or

EMG), and an abnormal nerve conduction velocity test. •Family history of RLS.

•Disease onset at any age with a clinical course that is typically chronic and

progressive with an increase in severity with advancing age.

Are there any tests to confirm the diagnosis of RLS and assess its severity?

The diagnosis of RLS is based solely on a thorough medical assessment using

the criteria described above. Physicians should check blood levels of

ferritin, a measure of iron storage. An overnight sleep or an ambulatory

monitor of leg activity for several nights may be suggested to document the

potential occurrence and frequency of periodic limb movements during sleep

(PLMS). During a specialized test known as a polysomnogram episodes of PLMS

are documented (as shown). More than 80% of people with RLS also have PLMS.

Documentation of PLMS during a sleep study (i.e., a PLMS index of >5 episodes

per hour) is strongly suggestive of RLS since PLMS occurs only rarely outside

of restless legs syndrome. In addition, a higher PLMS index correlates with

more severe RLS symptoms. Complaints of sleep disturbances (i.e., difficulty

falling asleep and maintaining sleep throughout the night) may also be

documented during an overnight sleep study.

Lifestyle Changes and Activities

Can lifestyle changes relieve RLS symptoms?

Making simple lifestyle changes plays an important role in alleviating

symptoms associated with restless legs syndrome. Therefore, physicians may

advise patients to consider altering their lifestyles, when possible, by

avoiding certain activities that may aggravate symptoms and engaging in others

that may help relieve symptoms.

What activities should be avoided?

The use of tobacco products or the consumption of alcohol may increase the

intensity of RLS symptoms. Therefore, refraining from alcohol consumption and

tobacco use is usually recommended. In general, the consumption of anti-nausea

medications, neuroleptic, and antidepressants should be avoided.

What activities are helpful?

Following a regular sleep routine may alleviate RLS symptoms, whereas having

irregular sleep habits may contribute to fatigue and potential aggravation of

symptoms. Therefore, it may be beneficial for patients to retire at the same

time every evening; arise at a regular time every morning; and ensure that

their sleeping environment is comfortable, quiet, and at an appropriate

temperature. In addition, physicians may recommend that patients develop an

awareness of the number of hours of sleep they require to feel refreshed

(restorative sleep) and then adjust their sleep routine accordingly. There is

a known circadian rhythm to RLS (i.e., the typical nighttime worsening of

symptoms may follow an approximate 24-hour biological pattern). Accordingly,

sleep studies have shown that individuals with RLS may best achieve

restorative sleep later in the 24-hour cycle (such as from 2 a.m. to

approximately 10 a.m.).

Regular, moderate exercise may also alleviate RLS symptoms. In contrast,

excessive exercise typically intensifies symptoms and therefore should be

avoided if possible. It is often recommended that exercise be discontinued at

least six hours prior to bedtime. However, some find that briefly performing

certain routine, moderate exercises immediately before bedtime may be helpful

in promoting sleep. Taking a hot bath or receiving a massage before bedtime

may also help to promote restorative sleep.

Some people with RLS may experience symptoms while sedentary (e.g., during

prolonged periods of sitting during traveling). In such cases, concentrating

on tasks that engage the mind may temporarily help to relieve symptoms. For

example, reading a gripping novel or playing a video game while traveling may

be beneficial.

Consuming a healthful, balanced diet may also play a role in alleviating RLS

symptoms. Physicians may also recommend appropriate vitamin supplementation to

help ensure proper nutrition.

Are there any other activities that may alleviate symptoms?

In many cases, when individuals experience symptoms associated with RLS,

engaging in particular movements or performing certain self-directed

activities (i.e., offering " counter stimuli " ) may provide temporary relief.

Such activities may include walking, bending, rocking, pacing the floor, or

stretching, massaging, or " jiggling " the affected limb(s). Applying hot

compresses or cold packs to the affected limb(s) or practicing relaxation

techniques may also be beneficial.

Some RLS Facts

• Willis first described RLS in 1685.

•RLS is sometimes referred to as " Ekbom's syndrome " after the researcher K.A.

Ekbom, who coined the term " restless legs " in 1945.

•In a large survey of people with RLS (The " Night s Survey " ), more than

50% of the respondents reported one or more first-degree relatives affected by

the disease.

•More than 60% experience progressive symptoms.

•Less than 15% experience remission.

•Although symptoms may wax and wane, RLS is usually chronic.

•As the disease progresses, there is an increased likelihood that RLS may

involve the arms as well as other parts of the body.

•Most people with RLS have mild but very annoying symptoms, usually disturbing

their sleep.

Additional Findings Associated with Restless Legs Syndrome

Other features associated with restless legs syndrome may include periodic

limb movements in sleep (PLMS) characterized by repeated stereotypic movements

of the legs. These movements typically consist of upward extension of the

great toe and foot as well as flexion of the ankle, knee, or hip. They occur

every 15 to 40 seconds and last for one half of a second up to 6 seconds,

usually during periods of lighter sleep (non-REM or NREM sleep). Patients who

experience at least five periodic limb movements per hour are said to have

PLMS. The number of periodic limb movements seems to increase along with the

severity of RLS symptoms. Most people with RLS also have PLMS; however, a

specialized sleep study is usually required to confirm PLMS. Large movements

associated with PLMS contribute, in some measure, to repeated arousals and

awakenings.

Almost all patients with RLS also experience sleep disturbances including

difficulty falling asleep as well as problems remaining asleep. Difficulty

with sleep onset (sleep latency) may be due to the activation of symptoms upon

relaxation. PLMS may also be an important contributing factor to sleep

disturbances during the night (sleep maintenance). Fifty percent of patients

report that discomfort in the leg(s) prevents them from getting a good night's

sleep. Those with severe symptoms may sleep for only a few hours each night

and, as a result, experience excessive daytime sleepiness (EDS). Increasing

difficulty falling asleep and maintaining sleep is usually associated with a

worsening of RLS symptoms.

While awake and at rest, patients may also experience uncontrolled, sporadic

movements of the legs (and, in some cases, the arms). These movements, which

may occur during the day or night, may be very rapid (myoclonic) or quite slow

and prolonged (dystonic); they usually disappear upon voluntary action. Some

researchers think that these movements, which are known as dyskinesias while

awake (DWA), may represent a wakeful form of PLMS. About 50% of individuals

who seek medical attention for RLS experience DWA.

The symptoms of RLS progress with increasing age; however, medical attention

is usually not sought until middle age or later. In addition, a family history

of RLS is often noted by patients with primary or idiopathic RLS; about 50% to

60% (or higher in some studies) report close relatives with the disease.

•What is Happening to Produce RLS Symptoms? •How is Restless Legs Syndrome

Diagnosed? •Restless Legs Syndrome Treatments •Restless Legs Syndrome FAQ

February 22, 1999