Welcome to our RLS (Restless Legs Syndrome) Support Group

(Our new internet address: http://www.rlshelp.org)  

If you want to search our site for any information please type it in the box below then click the Start Search button.

TABLE OF CONTENTS

1. Description and facts about RLS.
2. Read an overview of the treatment of RLS
3. The RLS/PLMD Treatment Page - Comprehensive Review of drugs used to treat RLS and PLMD.  This page contains all the drugs and different therapies used to treat RLS and PLMD and goes over them in detail.
4. RLS news and events.  Requip approved as the first FDA approved drug for RLS!
5. Information on the last meeting of the Southern California RLS Support Group.
6. Information on the next Southern California RLS Support Group meeting.
7. Information on the RLS Foundation, Inc. and how to obtain brochures, and the American Sleep Disorders Association and where to find a sleep center..
8. Info on RLS books
9. Info on the Southern California RLS Support Group's own RLS Book and Video Tapes.
10. Description of our letters from RLS patients describing their symptoms and remedies or go directly to the RLS Patient Letters Page 1, Page 2, Page 3,  Page 4,  Page 5,  Page 6,  Page 7,   Page 8,  Page 9, Page 10 , Page 11,  Page 12,  Page 13,  Page 14, Page 15 , Page 16, Page 17, Page 18, Page 19, Page 20, Page 21 , Page 22, Page 23,  Page 24,  Page 25,  Page 26, Page 27, Page 28,  Page 29, Page 30,  Page 31, Page 32,  Page 33, Page 34, Page 35, Page 36, Page 37, Page 38, Page 39, Page 40, Page 41, Page 42, Page 43, Page 44, Page 45, Page 46, Page 47, Page 48,  Page 49, Page 50, Page 51,Page 52,Page 53,Page 54,Page 55,Page 56,Page 57, Page 58, Page 59, Page 60, Page 61, Page 62, Page 63, Page 64,Page 65,Page 66,Page 67,Page 68,Page 69,Page 70,Page 71,Page 72,Page 73,Page 74,Page 75,Page 76,Page 77,Page 78,Page 79,Page 80 or Page 81.  Starting with Page 2, medical answers to questions in these letters will be presented.
11. List of other names used by patients to describe RLS.
12. Look for other links to sleep disorders and RLS.
13. Check out our old meetings.
14. View pictures of our meetings on our Photo Page
15. Read the new Mayo Clinic Proceedings article on the most current management of RLS. You will need Adobe Reader (which can be downloaded for free) to read this article.
16. Information on how to arrange a consult with RLS Specialist, Dr. Mark Buchfuhrer, M.D. 
17. Download a free pintable copy of our new RLS Medical Alert Card (Updated on 8/17/05) or click here for more information about this card and how to order a hard copy of the card.
18. Coping with RLS Picture Page.  Includes picture of things RLS patients do to cope with their disease.  This section includes sleeping aides, stretches, exercises, and other tricks to keep RLS symptoms at bay.  Send your picture to be shared and included in this section.

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 5 and 10.

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

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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.

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MEDICAL CONSULTATIONS FOR RLS

With the new RLS medications available,  RLS symptoms should be completely controlled.  If your doctors (family doctor, neurologist, or sleep specialist) have not relieved all of your RLS symptoms then you should seek consultation with an RLS specialist.  If you do not know of a good RLS specialist in your area, then you should check the RLS Foundation's website for the list of support groups where you may get a referral to a local RLS specialist.

If you live near southern California, Dr. Mark Buchfuhrer, the medical director of the Southern California Support Group is available for  consultations for both child and adult RLS patients.  Dr. Buchfuhrer is a sleep and RLS specialist who is also on the Medical Advisory Board of the RLS Foundation.

If you wish to see him for a consultation in his office, contact his office at the address below:

Mark J. Buchfuhrer, M.D.
11480 Brookshire Avenue, Suite 108
Downey, CA 90241
Tel:  562-904-1101
Fax: 562-904-1105

News

  RLS Medical Alert Card available for free

You can download a copy of the RLS Medical Alert Card by clicking here.  This card has valuable information about drugs to be avoided for RLS patients and there is space to add your drugs and other medical problems. 

Cardstock copies of this card are also be available from our group if you do not want to use the free download and print one up yourself.

To have one mailed, please send a self-addressed, stamped envelope (SASE) to: 

Janis Lopes
125 East Mayfair Avenue
Orange, CA 92867

Please add additional postage for each request over 9 cards.
 

RLS Foundation
1610 14th St NW Suite 300
Rochester, MN 55901
 

American Academy of Sleep Medicine
One Westbrook Corporate Center, Ste. 920,
Westchester, IL 60154
Telephone (708) 492-0930 Fax: (708) 492-0943 

RESTLESS LEGS SYNDROME: COPING WITH YOUR SLEEPLESS NIGHTS

This new book has the most comprehensive coverage of all aspects of this disorder. Written by three well known expert doctors in the RLS field, Dr. Mark J. Buchfuhrer, M.D., Dr. Wayne A. Hening, M.D. and Dr. Clete A. Kushida, M.D..  Discussion includes the basic science of RLS, causes, diagnosis and management (including non-drug and drug therapy, lifestyle changes, how to avoid triggers, coping with relationships and work), how to apply for disability and much more (including RLS in children and in other medical conditions).

This book should answer almost all of your RLS questions. It contains additional RLS resources and guides guides the reader on how to research RLS. This book will help RLS sufferers understand this condition so that they can take control of their lives and make informed decisions. It also will be a useful resource for families, caregivers, and health care providers.

You can purchase this book from Demos Medical Publishing.

This new book is written by Dr. Wayne Hening, Dr. Mark Buchfuhrer and Dr. Hochang Lee for primary care doctors. It covers the full range of topics on RLS including a chapter written by Dr. Lee, a psychiatrist on the psychiatric aspects of RLS. The book may be very useful for your PCP to better understand RLS and guide your treatment of the disorder. It is also quite useful for those suffering from the disorder although it is written in more medical level language than the other books in this section.

You can purchase this book from PCI publications.

First book on RLS - SLEEP THIEF, restless legs syndrome

Virginia N. Wilson (who had RLS herself) wrote this book on RLS edited by Arthur Walters, M.D. This is the first book published on RLS and has a wealth of information helpful for both doctors treating RLS and patients with the disorder. Get more information and order the book directly from Galaxy Books.

 

 

 

                                        

                                  Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic

This book is written by Robert H. Yoakum, who is an RLS sufferer, past member of the RLS Foundation's Board of Directors and a newspaper columnist.  He spent years researching information from all available sources on RLS in order to make this one of the most reliable and comprehensive books on the topic.  This book should be an extremely helpful guide for RLS patients, their family and friends.

 

 

 

 

 

 

Restless Legs Syndrome: The RLS Rebel's Survival Guide

Jill Gunzel, aka the the RLS Rebel, wrote this book. It can be purchased from her website or from other book retailers.  This book is recommended reading for all RLS sufferers.

 

 

 

 

 

 

 

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LETTERS FROM PATIENT'S DESCRIBING RLS SYMPTOMS AND REMEDIES

 

NOW INCLUDING MEDICAL ANSWERS TO YOUR QUESTIONS (starting on page 2)

Many RLS patients have written in and discussed their condition and written helpful hints about what helps them cope with RLS. There are so many letters that we have had to expand the section to several pages in order to accommodate them all. We invite all of you out there on the WEB with RLS to e-mail us with a description of your RLS symptoms and a brief account of what special treatments (activities, prescription or non-prescription medication, etc.) help your problem. Please leave your name (or at least your initials), gender, age, city and state; you can leave an e-mail address if you wish. We will print your responses, which should be very helpful for other people suffering from RLS, in our RLS Complaints and Remedies Page 1, Page 2, Page 3,  Page 4,  Page 5,  Page 6,  Page 7,   Page 8,  Page 9, Page 10 , Page 11,  Page 12,  Page 13,  Page 14, Page 15, Page 16, Page 17, Page 18, Page 19, Page 19, Page 20, Page 21 , Page 22, Page 23, Page 24,  Page 25,  Page 26, Page 27,  Page 28,  Page 29, Page 30,  Page 31, Page 32,  Page 33, Page 34, Page 35, Page 36, Page 37, Page 39, Page 40, Page 41, Page 42, Page 43, Page 44, Page 45, Page 46, Page 47,  Page 48,  Page 49, Page 50, Page 51,Page 52,Page 53, Page 54, Page 55.Page 56, Page 57, Page 58, Page 59, Page 60, Page 61, Page 62, Page 63, Page 64, Page 65, Page 66, Page 67, Page 68, Page 70, Page 71, Page 72,Page 73,Page 74,Page 75,Page 76,Page 77,Page 78,Page 79,Page 80 or Page 81.  We will also try to give medical answers to any appropriate questions in your letters about RLS.

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You Name It - Other names people use for RLS

 
If you have RLS but have never liked the official name or if you just have another pet name for this problem, e-mail us with your name for this disorder. Below is a small list of names that other people have used. We will add your entries to this page.

 

	Fidgety Legs
	Jumpies
	The Gotta Moves
	Wiggles
	Wheeby Geebees
	Tortured Limbs
	The Jitters
	The Jerks
	Night Thrashers
	Heebee-Jeebees
	Mom's Leg Thing
	The Fidgits
	The Creepy Crawlies Legs
	Jumpy Legs
	Jumpy Knees
	Tickle Legs
	Tickle Foot
	The Crawlies
	Edgy Legs
	Bugs in the bones
	Having butterflies in my legs
	Jimmy legs
	Wiggle worm
	Night crawls
	Day crawls
	Bugs crawling in my legs at night
	Anxious legs
	Anxious feet
	The twitches
	The screeches
	Eeeky
	Tingle Leg
	The Crinkles
	Stretchy legs
	Dead legs
	Hot legs
	Worm legs
	Magic legs
	That Icky Twitchy Leg Thing
	Jumpy Life
	Dancing Legs
	Weak-knee-itis
	Crazy legs
	Crawly legs
	Wretched limb syndrome
	The Scritchees
	Lead legs
	The leggy thing
	Legs want to break dance
	Twidgets
	My hands and feet are nervous
	Racing legs
	The kicks
	Crazy leg thing
	The crawls
	The Jiggies
	Achy Legs
	Achy Knees
	The shpilkes
	The stomps
	Night Time Jitterbug
	Happy feet
	Happy legs
	Symphony Feet
	Ant Legs
	Jello Legs
	The Creepers
	The Willy Wumples
	Legitis
	Great RLS Boogie
	The Ickies
	The Worms
	The Misery
	The Knee Jerk
	Bone itch
	Busy legs
	The Nadgers
	Spongy Leg Disease
	That Knee Thing
	Kickies
	The Tingles
	Alien legs
	Leg Thrashies
	Itchy Blood
	Funny Legs
	Nervous leg syndrome
	Racer legs
	Grasshopper legs
	Aerobic sleeping
	Spider legs
	Jiggles in my legs
	Feet cramps
	Muzzy legs
	Last Nerve Disease
	Twittery legs
	The Itchies
	Itchy chin-bone
	Antsy Legs
	Floggin legs
	Woolie-Bullies
	Leaping Legs
	Hopping Legs
	Kicky  Legs
	Funny Bone Legs
	Jiggy Legs
	The Grunions
	Legs are mad
	Walking Legs
	Flapping Legs
	Shaky Leg Syndrome
	Butterfly twitches
	Leg oochies
	Angry Legs
	F.L.I.M.S. - Flailing Limbs In My Sleep Syndrome
	Sewing machine legs

 

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If you have questions about your RLS problems or to leave us a message you can send us an .

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DISCLAIMER

The information and advice on RLS given on this web site is for educational purposes only.  None of the advice, information or medical treatments should be followed without the supervision of your medical provider.  The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor.  Do not undertake RLS medication treatment on your own!  Please seek qualified professional medical care to help treat your RLS symptoms.

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