Do I have restless legs syndrome?
What are the primary features of RLS?
How can I find a healthcare provider who treats RLS?
What are the treatment options for RLS?
What non-drug treatments are recommended for RLS?
Is it possible to have RLS in other parts of the body?
Can taking vitamin or mineral supplements help my RLS?
Are there any medications that can make RLS worse?
Are there any substances that should be avoided?
I suspect that my child may have RLS. Is this possible?
How do doctors diagnose RLS?
Is RLS hereditary?
Is there a known cause for RLS?
How common is RLS?
How do I receive additional information about RLS?
What is augmentation?
Are there exercises that can help with RLS?
What are the side effects of RLS medications?
Can you give me a list of support groups in my area?
How can I help?
How does dopamine play a role in RLS?
1. Do I have restless legs syndrome (RLS)?
Chances are, if you are reading this answer, it is because you are concerned that you
or someone you love may have restless legs syndrome (RLS). How many of the
questions below are true for you?
When you sit or lie down, do you have a strong desire to move your legs?
Does your desire to move your legs feel impossible to resist?
Have you ever used the words unpleasant, creepy crawly, creeping, itching, pulling, or
tugging to describe your symptoms to others?
Does your desire to move often occur when you are resting or sitting still?
Does moving your legs make you feel better?
Do you complain of these symptoms more at night?
Do you keep your bed partner awake with the jerking movements of your legs?
Do your ever have involuntary leg movements while you are awake?
Are you tired or unable to concentrate during the day?
Do any of your family members have similar complaints?
Does a trip to the doctor only reveal that nothing is wrong and there is no physical
cause for your discomfort?
If you answered "yes" to a majority of these questions, you may have RLS. If you do
have RLS, you are not alone! Up to 10% of the U.S. population may have RLS. Many
people have a mild form of the disorder, but RLS severely affects the lives of millions
of individuals.
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2. What are the primary features of RLS?
In order for you to be officially diagnosed with RLS, you must meet the criteria
described in the four bullets below:
You have a strong urge to move your legs which you may not be able to resist. The
need to move is often accompanied by uncomfortable sensations. Some words used
to describe these sensations include: creeping, itching, pulling, creepy-crawly,
tugging, or gnawing.
Your RLS symptoms start or become worse when you are resting. The longer you are
resting, the greater the chance the symptoms will occur and the more severe they are
likely to be.
Your RLS symptoms get better when you move your legs. The relief can be complete
or only partial but generally starts very soon after starting an activity. Relief persists as
long as the motor activity continues.
Your RLS symptoms are worse in the evening especially when you are lying down.
Activities that bother you at night do not bother you during the day.
RLS can also cause difficulty in falling or staying asleep which can be one of the chief
complaints of the syndrome. A substantial number of people who have RLS also have
periodic limb movements of sleep (PLMS). These are jerks that occur every 20 to 30
seconds on and off throughout the night. This can cause partial awakenings that
disrupt sleep. Sleep deprivation can seriously impact your work, relationships, and
health.
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3. How can I find a healthcare provider who treats RLS?
Several options are available to you when attempting to find a healthcare provider to
treat your RLS.
First, you may use the Healthcare Provider Directory provided by the RLS Foundation.
This directory includes a listing of providers who have expressed interest in treating
patients with RLS. However, it should be noted that the Foundation does not endorse
these providers.
Second, support group leaders are often familiar with the names and addresses of
healthcare providers in their area who treat RLS. For a support group in your area,
please visit our Support Group Directory to find the one closest to you.
Third, you can contact your local medical society or ask your own healthcare provider
to give you a referral to someone who specializes in treating RLS. Though primary
care physicians are capable of diagnosing and treating RLS, some patients may need
to consult with a sleep specialist or neurologist.
If none of these options works for you, you could also contact the American Medical
Association or utilize their Online Doctor Finder. You can search this database by your
location or the physician's specialty.
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4. What are the treatment options for RLS?
On May 5, 2005, the FDA approved the first drug for treatment of restless legs
syndrome: ropinirole (Requip). In 2006, the FDA also approved pramipexole (Mirapex).
However, several drugs approved for other conditions have undergone clinical
studies in RLS and have been found to be helpful. These medications fall into four
major classes: dopaminergic agents, sleeping aids, anticonvulsants, and pain
relievers. You should never adjust your medications without speaking to your doctor
first. In addition to medications, there are other things you and your doctor can
consider when trying to help you deal with RLS.
Our patient publication, Restless Legs Syndrome: Causes, Diagnosis and Treatment,
is a great starting point for more information. If you would like to receive a copy of the
brochure, call our toll-free number at 1-877-463-6757.
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5. What non-drug treatments are recommended for RLS?
In addition to medications, there are other things you and your doctor can consider
when trying to help you deal with RLS. These options may include:
Checking to see if there is an underlying iron or vitamin deficiency and then possibly
supplementing your diet with iron, vitamin B12 or folate.
Looking at medications you may be taking which make RLS worse. These may include
drugs used to treat high blood pressure, heart conditions, nausea, colds, allergies and
depression.
Looking at any herbal and over-the-counter medicines you may be taking to see if they
could be worsening your RLS.
Identifying habits and activities that worsen RLS symptoms.
Looking at your diet to assure it is healthy and balanced.
Discussing whether or not antihistamines could be contributing to your RLS.
Eliminating your alcohol intake.
Looking at various activities that may help you personally deal with RLS. These could
include walking, stretching, taking a hot or cold bath, massaging, acupressure, or
relaxation techniques.
Attempting to keep your mind engaged with activities like discussions, needlework or
video games when you have to stay seated.
Implementing a program of good sleep habits.
Possibly eliminating caffeine from your diet to aid in general sleep hygiene.
By arming yourself with information, you have taken the first step toward defeating
RLS. However, your optimum plan requires that you work together with your
healthcare provider. Some things that you can do to help eliminate or reduce the need
for drugs include:
Living a healthy lifestyle.
Eliminating symptom-producing substances.
Taking vitamin and mineral supplements as necessary.
Engaging in activities which help take your mind off of RLS.
Avoiding or eliminating foods or medicines that aggravate your symptoms.
If you do need medication, careful trials may be necessary to find the medication and
dosage that works best for you, and sometimes a medication that worked well in the
past may become ineffective. Because no single treatment for RLS is entirely effective
for everyone, continued research is of vital importance. Until we find the cause of RLS
and a cure for it, your best approach is to work closely with your healthcare provider,
join a local RLS support group, and explore both non-drug and drug treatments.
These strategies offer the most reliable approach to living a happy and productive life
in spite of having RLS.
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6. Is it possible to have RLS in other areas of the body?
Yes, RLS can affect the arms or even the trunk.
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7. Can taking vitamin or mineral supplements help my RLS?
If an underlying iron or vitamin deficiency is found to be the cause of your restless
legs, supplementing with iron, vitamin B or folate (as indicated) may reduce or even
alleviate your symptoms. Because the use of even moderate amounts of some
minerals (such as iron, magnesium, potassium, and calcium) can impair your body's
ability to use other minerals or can cause toxicity, you should use mineral
supplements only on the advice of your healthcare provider.
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8. Are there any medications that can make RLS worse?
Yes. These include:
Antihistamines (like Benadryl) found in many cold, allergy and over the counter
sleeping pills.
Anti-dizzy, anti-nausea medications like meclizine, Compazine, Phenergan and Reglan.
Antidepressants such as Elavil, Prozac, Lexapro, Effexor.
Psychiatric medications that treat bipolar disorders, schizophrenia and other serious
disorders such as haloperidol and phenothiazines.
Always be sure that your healthcare provider is aware of all the medicines you are
taking, including herbal and over-the-counter medications.
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9. Are there any substances that should be avoided?
The use of caffeine often intensifies RLS symptoms. Caffeine-containing products,
including chocolate and caffeinated beverages such as coffee, tea, and soft drinks
should be avoided. The consumption of alcohol also increases the span or intensity of
symptoms for most individuals.
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10. I suspect that my child may have RLS. Is this possible?
While RLS is most often diagnosed in middle-aged individuals, RLS affects people of
all ages. however, people can usually trace their symptoms back to their childhood.
They often remember hearing things like, "Those are growing pains" or "Quit wiggling
so much."
We now know that RLS affects people of all ages. Evidence connecting RLS and
attention-deficit hyperactivity disorder (ADHD) is growing. Our newest publication:
Children & RLS is a great place to start looking for more information.
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11. How do doctors diagnose RLS?
Your doctor should:
Listen to a description of your symptoms.
Complete a diagnostic interview checking for symptoms highlighted on the previous
page.
Review your medical history.
Complete a thorough physical exam.
Rule out conditions that may be confused with RLS.
Your doctor might:
Check your iron (ferritin) levels.
Ask you to stay overnight in a sleep study lab to determine other causes of your sleep
disturbance.
Your doctor cannot:
Use lab tests to confirm or deny the presence of RLS (no tests are available).
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12. Is RLS hereditary?
RLS often runs in families. In July of 2007, researchers discovered a gene variant for
RLS.
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13. Is there a known cause for RLS?
Extensive research into the cause of RLS is occurring worldwide. A single unifying
cause has not been identified, but we are getting closer. Here is what we do know:
RLS often runs in families. This is called primary or familial RLS. Researchers are
currently looking for the gene or genes that cause RLS.
RLS sometimes appears to be a result of another condition, which, when present,
worsens the underlying RLS. This is called secondary RLS.
Up to 25% of women develop RLS during pregnancy but symptoms often disappear
after giving birth.
Anemia and low iron levels frequently contribute to a worsening of RLS.
RLS is very common in patients requiring dialysis for end-stage renal disease.
Damage to the nerves of the hands or feet (i.e., peripheral neuropathy) from any
number of causes including diabetes contributes to RLS.
Attention Deficit Disorder (ADD) is common in children and adults with RLS.
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14. How common is RLS?
Rigorous epidemiologic studies into the true prevalence of RLS are underway.
However, several studies have been conducted that look at the rate of response to
questions such as "Do you have a creepy, crawly sensation in your legs at night when
you attempt to sleep?" Positive rates have ranged from 3% to 15%.
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15. How do I receive additional information about RLS?
Our most popular patient publication, Restless Legs Syndrome: Causes, Diagnosis
and Treatment, is our gift to you! If you would like to receive a copy of the brochure,
call our toll-free number 1-877-463-6757.
To receive the most up-to-date and comprehensive information, you can become a
member of the Restless Legs Syndrome Foundation. As a member, you will receive
our quarterly newsletter NightWalkers featuring the latest information on treatment and
research while also allowing readers to ask questions and get answers from top RLS
specialists.
We also have many other publications that you can share with your personal
physician. For a complete listing of RLS Foundation publications, click here.
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16. What is augmentation?
If augmentation occurs, your usual dose of a dopaminergic agent will relieve your
symptoms so that you are able to sleep at night, but eventually, the unpleasant
sensations will develop earlier in the day. Augmentation of RLS symptoms may occur
after an initial period of relief with dopaminergic agents, and unfortunately, increasing
your dosage will probably worsen your symptoms. If augmentation occurs, you and
your doctor can work together to find a new drug regimen that will work for you.
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17. Are there exercises that can help with RLS?
In 2006, a small study found that a combination of moderate aerobic exercise and
lower-body resistance training three days a week reduced symptom severity by about
50%. The study found that it took six weeks to see maximum benefit from the exercise
program. Generally, people with RLS have reported that moderate exercise seems
helpful and that strenuous exercise may worsen their RLS.
We have many members who share their own personal success stories with us. We
then share these in "Bedtime Stories", a section of our quarterly newsletter
NightWalkers. To have NightWalkers delivered to your own mailbox by joining the RLS
Foundation, click here. To view past issues of NightWalkers, click here.
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18. What are the side effects of RLS medications?
Each medication you use carries risk of side effects. For details on specific side
effects, it is best to discuss your prescription with your physician. Helpful online
resources include:
RLS Foundation Medical Bulletin
Mayo Clinic.com (or another reliable medical website)
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19. Can you give me a list of support groups in my area?
Of course! Click here for a list of a support group near you. No group in your area?
Consider finding support online on our Discussion Board or consider starting a group
yourself.
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20. How can I help?
The RLS Foundation depends on people like you to continue our mission. Here are
just a few of the ways you can make a difference in our organization:
Donate to the RLS Foundation
Join the RLS Foundation
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21. How does dopamine play a role in RLS?
As most RLS patients know, the use of dopamine medications often provides good
treatment for RLS. It is generally felt and recent PET (position emission tomographic)
scans have tended to confirm, that RLS involves abnormal dopamine activity in the
brain. It is our basic hypothesis that the low brain iron causes the dopamine problems
in the brain, which in turn cause RLS.
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