Restless Legs Syndrome Foundation Blog

JULY 12, 2018

Ode to RLS/PLMD

A Poem by Isabella Horsky

Isabella has been an RLS Foundation member since 1998.
I'm sitting in the concert hall, the show will soon begin.
The orchestra is tuning up - the horns and first violin.
They finish the first movement of a Haydn symphony,
When I start feeling tickles, and I know the augury:
Before the measure ends, my leg involuntarily
Jerks upward in a spasm that the person next to me
Can't help but notice. And when twenty seconds pass and then,
In spite of my best efforts, that leg levitates again,
He looks at me as if he thinks that I might be contagious.
To cope with my embarrassment I find it's advantageous
To get a seat right by the aisle. And that is just in case
My PLMD gets so bad, I have to leave the place.
Now Haydn is concluded and they're playing Bach or Lizst,
And I'm outside, lamenting all the music that I've missed.

It's not much different on a plane. Soon after we depart
I feel the same sensations in one leg. It soon will start
To jump and jerk for several seconds, twenty then of respite
Before the next. Whate'er I try, I never can arrest it.
But now I can't get up and stretch. I have to stay and sit,
Because my legs don't understand the seat belt sign is lit.
My neighbor notices my twitch. With look of trepidation
She wonders if, when she gets home, she'll need inoculation.
She looks away, uncomfortable, and then she starts to doze.
I wish my legs would follow suit and grant me some repose,
I eat a snack, recline my seat and try hard to relax.
To no avail. Just then a leg maliciously attacks,
Providing for my body even greater turbulence
Than pilots flying through a wind storm might experience.

So now let's say I stay at home. I have some time that's free.
I'd like to knit, do puzzles or compose some poetry.
But if I want to just be still, to read a book or pray,
My legs soon start to twitch as if they want to run away.
And if, by chance, I think I'd like to take a little nap -
You guessed it: Pretty soon a leg begins to tense, then flap
And jerk. It acts as if it were an independent thinker.
And if I had some booze, I might become a heavy drinker.
I shuffle pillows, toss and turn, then lie this way and that.
The dog jumps off my bed and slinks forlornly to his mat.

Then after supper in the evening is the time I dread
Because I know the old routine when I must go to bed.
I read a gentle novel or I listen to some Bach.
I make a point of never looking over at my clock
To see how many minutes of that twitching might have passed.
I wonder if each spasm will turn out to be the last.

So now of sleep I've been deprived for over 40 years.
The thought could very soon engender bitterness or tears
Of helplessness, frustration. Truth to tell, I can't conceive
Of life without PLMD, but somehow I believe
There is a loving God who will continue to provide
The energy that comes from rest, of which I've been denied.
If daily He did not help me to grow in this conviction,
I'd find it quite impossible to deal with my affliction.
Besides which, spending every day in scowling, grumpy mood
Will use up far more energy than simple gratitude.

Restless Legs Syndrome Blues

A Song by Bjorn Fredrickson

I've been making music with computer software for a long time. I became interested in the blues a couple of years ago, especially the traditional twelve bar blues style. Since I don't have the typical problems described in most blues songs (my baby done left me, ain't got no money and the rent is due, etc.) I went for my main issue, restless legs syndrome, which really does qualify as something to be blue about. So, I wrote this song. And I sang it, even though I'm not much of a singer. All the instruments are sampled instruments which I "played" within the software.

The name of this song sounds like a joke. It's not. I have RLS and the lyrics pretty much describe my life before I finally was put on a medication to control the symptoms.

Click here to listen to Bjorn's original song about his experience with restless legs syndrome.

Can't sleep
Got the creeps
In my legs in my arms
Can't sleep

Can't sleep
Got the creeps
In my legs in my arms
Can't sleep

Starts about a quarter to nine
Lets me be at a quarter to three
Can't sleep
Just can't sleep

Out of bed
And I head
Down the stairs
Walk around all night

Living room
Dining room
I just walk through the house
All night

Gotta keep moving
Gotta keep on moving til
A quarter to three
A quarter to three

Worn out
I'm so worn out
I'm dead tired
All day long
Couldn't sleep

Worn out
I'm so worn out
I can't take this any longer
Can't sleep

Got to take a nap you know
But the boss man he says, "No"
Worn out
I'm so worn out

Got the squirms
Toss and turn
Restless legs
It won't leave me alone

Got the squirms
Toss and turn
Every night all night long
All night

Restless legs syndrome
You say ain't no big thing
You don't know
Man you don't know

Opioid Study Still Seeking Participants

Lewis Phelps is current chair of the RLS Foundation Board of Directors. He is a strategic public relations consultant with Sitrick And Company, a Los Angeles-based firm that specializes in handling crisis situations. Previously, Phelps was head of the public relations function for the nation’s second largest electric utility and for two major U.S. rail transportation companies. Early in his career he was a staff reporter for the Wall Street Journal for 10 years.

Phelps has extensive non-profit board experience in addition to a prior six-year term on the RLS Foundation board. He has chaired United Way campaigns in two cities, co-founded an anti-litter organization in Roanoke, Virginia, was on the board and executive committee of the California Science Center for 15 years, and has served as chair of the board of Pasadena Heritage, one of the nation’s leading local historic preservation organizations.

I encourage members of the RLS community to participate in the National RLS Opioid Registry, an important new study that has been funded by the RLS Foundation and is being conducted by John Weyl Winkelman, MD, PhD, and Chief of the Sleep Disorders Clinical Research Program at Massachusetts General Hospital. He is an internationally leading RLS researcher and long-standing member of the Foundation’s Scientific and Medical Advisory Board.

The study seeks to track up to 200 RLS patients who are currently being treated with an opioid medication, and who formerly were treated with a dopamine enhancing drug such as Mirapex or Requip. As of early March 2018, the study is more than halfway toward its enrollment goal.

There’s no monetary payment for participants, but the psychic rewards are large. By joining the study, you can help to significantly increase the body of scientific information that is available on the effectiveness of low dose opioids to treat RLS and the potential side effects. You can also learn how your personal experience with opioids compares with other RLS patients.

While some solid scientific studies address these questions, the Mass General study will expand our knowledge about the efficacy and safety of opioids to treat RLS. Such information will be valuable in coming months and years as the RLS Foundation grapples with the challenges that RLS patients are facing due to growing restrictions on use of opioids.

Addiction is obviously a huge and growing problem in the US. However, available clinical data suggest that using low doses of opioids to treat RLS will not contribute meaningfully to the addiction epidemic.

I can speak from personal experience in saying that participation in the RLS Registry is not difficult, time consuming, or unpleasant; I have become one of the study’s subjects. When you enroll, a researcher will conduct a 45-minute telephone interview with you, at a convenient time. They will ask about your current and former medications used to treat RLS, and your experience with them. The researcher who conducts the interviews is courteous, professional, and pleasant.

Following the initial interview, you will be asked to complete an online survey that takes about 20 minutes, and then you will be asked to complete a similar online survey every six months for up to five years. Your answers to the questions are completely confidential, and all information is kept on a secure hospital database that is only accessible by Dr. Winkelman and his research coordinator.

Each year of the study, you will receive a personal report about the overall results of the study to date, as well as a comparison of your own experience with opioids compared with the study group overall. For example, you will be informed whether your RLS symptoms are controlled better, worse, or about the same as the study group overall.

If you have RLS and are currently being treated with opioids, please do yourself and everyone else who has RLS a favor by joining the study. To do so, simply send an email to rlsregistry@partners.org, in which you identify yourself, provide contact information (email and phone number) and indicate that you wish to volunteer as a study subject.

Thanks,

Lew Phelps, Chair of the RLS Foundation Board of Directors

RLS: A Real Lousy Syndrome, Part 2

A Poem by Jim Healey

Two months ago, I wrote a poem

About my battle with RLS.

I emphasized my lost sleep,

But now that loss is much less.

Things have changed a lot since then,

At shows, I'm not standing in the back.

On airplanes now, I can stay in my seat,

And I sleep when I hit the sack.

I've read for years that alcohol's no good

For people with our affliction.

Could two drinks a day make any difference at all?

My answer was, "no," with conviction.

But I had to find out, so I gave up the booze.

I hoped this experiment would fail.

But I'm here to tell you, it's a rousing success,

My symptoms are on the pale.

My meds are the same with a bit lower dose,

But the pains are fewer and weaker.

I miss my Old Fashioneds, but I found a fake beer

That tastes okay and it's cheaper.

My wife lets me drive more than before,

'Cause now my leg's not her foe.

You might say I traded booze for snooze,

Wish I'd done it four decades ago!

RLS: A Real Lousy Syndrome

A Poem by Jim Healey

If you're a victim of RLS

I know you'll connect with this rhyme.

Some say the darn thing's a bother

I say the darn thing's a crime.

My mother had legs that misbehaved

She never knew what was wrong.

“It's like little men with knives,” she said

“Tormenting me all night long.”

At age 32, my little men moved in

And started taking their licks.

They had to be awfully small little men

My legs are the size of toothpicks.

The doctor said it's arthritis

That stuff can really be cruel.

I'm guessing he missed the RLS lecture

That day he played hookey from school.

I tried to fight it with aspirin

Even tried some DMSO.*

But over the years I've lost lots of sleep

I just couldn't conquer my foe.

In theaters I grab the aisle seat

In case I get an attack.

And when I do, I swear it's true

I'm the only one standing in back.

One day my wife, Brainy Lainey

Said, “Put this at the top of your list.

Your problem's not bones or muscles or joints,

You need a neurologist.”

The new doctor I saw

Said I don't have to guess.

You're in pretty good shape

But you've got RLS.

He prescribed some new meds,

I sleep better at night.

I’m a long way from cured

But I'm winning the fight.

I've been standing up for hours most of my life,

I'm always on my feet.

I stand a lot to watch TV

Or read or even eat.

My shoes that once were single A

Are now a wider C.

My height is only six feet now

Down from six feet three.

My wife won't let me drive too far,

She hates when my leg starts to flop.

She pictures me hitting the gas too hard

Or making us skid to a stop.

When my leg acts up, she'll pull off and park

Then I walk, but not very far.

I'll stroll a strip mall and window shop

While she sits locked in the car.

A doctor friend once wrote me a note

Telling the airlines my affliction.

We figured they'd give me the exit row

But it failed to win their conviction.

They decided I must be unfit

To handle the exit row work.

So now I try hard to get on board early

To capture that exit row perk.

If only I could walk around

But that seat belt sign is lit.

I'm a prisoner on this plane right now,

My cell is where I sit.

So I writhe and twist

And take off my shoe.

The pill isn't working

Now what do I do?

If I go back to the john, where I've been a few times

I could stand for a while in there.

But darn the luck, the guy on the aisle

Is now fast asleep in his chair.

In a perfect world, if I wanted to travel

I'd be rarin' to get up and go.

Because now there would be a new federal law

That permits me to fly SRO!

*Dimethyl sulfoxide

My SIBO Story

Do certain foods seem to trigger your RLS? Or, when you experience bloating or abdominal fullness, do these conditions seem to exacerbate your RLS? If so, read on.

I finally made the connection between my restless legs and many years of (undiagnosed) Irritable Bowel Syndrome (IBS). I heard from Caroline Chamales, the RLS Foundation support group leader in San Diego, that Dr. Leonard Weinstock, a gastroenterologist at Washington University in St. Louis, was collaborating with Dr. Arthur Walters, a well-known RLS expert, Professor of Neurology at Vanderbilt and an active member of the Foundation's Scientific and Medical Advisory Board, to study the relationship between a gut infection that causes IBS-like symptoms and RLS. I jumped at the chance to learn more.

I went to my local gastroenterologist and insisted that I get tested for a gastrointestinal infection, called SIBO, which stands for Small Intestine Bacterial Overgrowth. To get a better footing on the subject, my gastroenterologist (GI doctor) suggested that I read the book, A New IBS Solution by Dr Mark Pimentel, Director of the GI Motility Program at Cedars Sinai Hospital in Los Angeles. Dr. Pimentel has devoted his career to studying IBS and is responsible for developing a breath test that diagnoses bacterial overgrowth in the small intestine that causes distress.

In St. Louis, Dr. Weinstock’s practice actually includes an RLS Clinic where he treats patients with the two diagnoses. Because Dr. Weinstock’s clinic is in Missouri and I live in the vicinity of Cedars Sinai, I chose to get treatment locally.

I took the breath test, was diagnosed with SIBO and treated with an antibiotic used to treat IBS, travelers’ diarrhea and hepatic encephalopathy called Rifaximen. And, in what seemed like a miracle, into the second week after taking the full course of the antibiotic, my RLS improved significantly. My nighttime RLS disappeared!

However, a potential complication is that people who have been diagnosed with SIBO frequently relapse. After the bacteria is killed, there is a healing period that is required. Because this is still considered a gray area of medicine, there is no standard regimen that has been embraced yet by mainstream medical providers.

I wish that I could close with a happy ending. I too have suffered a relapse filled with sleepless nights, difficulty swallowing, reflux, food intolerances and leg pain which at times triggers a full-blown attack of RLS. The journey has been no walk in the park, but I do harbor the hope that there is a rainbow somewhere in my not-so-distant future.

During the six years that I have suffered from both SIBO and nightly RLS, I had been diagnosed with osteopenia and nutritional deficiencies including Vitamin B12, and my ferritin was on the borderline reading of 50. Some have postulated that the overgrowth of bacteria in the small intestine causes malabsorption of nutrients. The bacteria were literally eating my lunch!

One takeaway from my experience is that the Low FODMAP diet, developed by the Monash University in Australia, helped with my symptoms as well as with my RLS. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. In simpler terms, FODMAPs are carbohydrates (sugars) that are found in foods. However, not all carbohydrates are considered FODMAPs. Once diagnosed with IBS by your gastroenterologist, you can discuss if the FODMAP diet is an appropriate nutritional therapy for management of your IBS. Current research suggests the FODMAP diet reduces symptoms of IBS. A majority of individuals with IBS also have SIBO, a major contributing factor to the development of IBS.

If you have been diagnosed with IBS and think that you may have SIBO, seek the professional opinion of a gastroenterologist for further evaluation.

Susan is the RLS Foundation's support group leader in Southern California.

Finding Hope

I’ve tried to describe emotional aspects of having severe or refractory RLS. The word “refractory” in medicine means “not treatable” or “resistant to treatment.” Those of us in this RLS category have horrible symptoms at any time of day OR night. The symptoms and pain will disturb any facet of daily living. RLS does not discriminate. I’ve had feelings of not “fitting in” in social settings, especially knowing that I could have an uncontrollable bout of restlessness. Or worse yet, my sheer terror of having an episode of RLS just when I have to be calm and quiet -- I’ve lied to get out of such situations. I feel very angry at being powerless over such an invasive illness. RLS is a monster that is all-consuming. I came to realize that I had lost the power of choice physically, and was close to losing the one most valuable of feelings: hope. Realizing that hope is a huge part of living happily, I aggressively sought help.

In one year, three neurologists and four more attempts at medication adjustments resulted in three visits to emergency rooms and two calls to “crises on-call” telephone services, as I was having horrible medication reactions. I was exhausting all avenues for relief from RLS insanity. There are several RLS Quality Care Centers and it seemed to make sense to contact one and hope for admission. There was one neurologist I wanted to contact as I had seen him years ago regarding a medication. Why see him now? I didn’t know, but it was significant. No, it was life-changing. My physician, it turns out, is very familiar with RLS and has treated refractory cases successfully. His knowledge and treatment skills are based on sound, demonstrated and practical RLS treatment protocols. And, he is a really great guy. Within two days after my first visit, I started my journey into wellness. That was three months ago.

Resignation is understandable. But, now I know that relief is possible. Basic things have changed in my life. It was just a month ago that I bought a book; A simple mystery novel written by an author that I loved to read when I could sit quietly, empty my mind, and enjoy fiction as fact without disturbances from my RLS. What a joy it was to go to a bookstore and actually feel like I had a purpose, a reason in being there! That was groundbreaking.

My RLS was an imposition on my wife. She would see me walk for hours during the night doing my “circle 8” in the kitchen, living room and dining room. And she felt it. She felt the pain of not going to movies or plays or concerts. Felt the pain of being uncertain about gatherings because “my legs hurt.” And she felt the pain of hopelessness, because that is what she saw at every failed attempt for a remedy. Two weeks ago we went to a movie that I would not have chosen because of content and appeal. I was able to sit through the movie, and was able to ask questions about it later sitting in our living room. Sitting. Quietly.

And now, there is the beauty of sleeping when I want to rather than reach the point of deathly exhaustion. I still have troublesome and unfortunate sleep behaviors learned over 25 years of illness that may not be corrected. I have already found the wonder of regular sleep versus desperation naps. A different world. So now, I’m positive I will be able to come close to experiencing a far better sense of being normal. It’s already started, and my accounts of health and really good rest are noticed by friends and family. I’m told that I look and sound different. Now, I again have hope. I have great hope that the rest of my life will be truly peaceful. I hope that at least one reader will try “just one more” physician or go to a recognized RLS Quality Care Center. There is a solution under some rock – don’t stop turning them over.

A Wonderful Place to Be

Submitted by: Ann Battenfield, discussion board moderator for the RLS Foundation

It is 3:10 AM. I wanted to go to sleep hours ago. I wonder what went wrong. I am relatively sure I took my medication correctly, but for some reason the sensations and urge to move are reluctant to stop. As they are all too many nights. Some nights I would be pacing; I am lucky tonight and can sit and type. So I head to my favorite place on such nights.

When I was a child, no one would sleep with me. It was a family joke that my bed looked as if a tornado hit it; every morning sheets were pulled out, covers on the floor, and I often was asleep upside down or with my legs dangling over the edge when someone would awaken me. As an early teen, I joined the jumpy leg club that included several family members. Some people learn how to play golf or knit from their grandparents; I learned how to use sewing machine legs when you had to be seated or how to punch my legs with my fist to apply counter stimulation.

I watched my grandmother struggle with her symptoms and medications; I vowed to use non-pharmaceutical options, distraction, and counter stimulation. Yet when I couldn't work anymore and was unable to remember nouns because of the cumulative effect of missing sleep, I finally caved.

I was put on pramipexole to treat the PLMs; my RLS was very mild and did not need any treatment. Soon, though, I had daily RLS. The neurologist kept increasing the pramipexole, I kept getting earlier RLS. For a year, this went on until I did not sleep more than an hour or so a night and the RLS was 24/7. One October, while searching about RLS online, I found the RLS Foundation's newly created Discussion Board. The members welcomed me warmly and I instantly felt better – other people were in a similar situation. Other people were getting help. Other people had uninformed doctors, too.

I read every post on the Discussion Board over the next few weeks, learning as much as I could. Through one of the posts, I found a link to the Southern California Support Group site and to the pages and pages of emails sent to Dr. Mark Buchfuhrer along with his answers. I emailed him immediately and told him about my symptoms. He responded the next day and I finally knew what was wrong. I had augmentation.

On the Discussion Board, I learned the RLS Foundation was hosting the first ever RLS conference; I booked a ticket immediately. I kept reading posts and conversing with others on the Discussion Board. I logged in every day, sometimes two to three times. I went to the conference and I met Drs. Richard Allen, Christopher Earley, David Rye and others, as well as several members of the Discussion Board. I learned of a way to resolve augmentation through the information and support of those wonderful people who were suffering as much or more. I found a way to make the RLS more manageable.

Twelve years later I still log into the Discussion Board every day, sometimes two or three times. Some of the people who were there to welcome me are still members and stop by occasionally. Thousands of others have joined. I have made many friends and hope that I have been paying it forward, as others did with me so long ago. On nights such as tonight, coming to the Discussion Board is like coming home. A home where people support me, where accurate information is available, and where I can sometimes help others with compassion, understanding, and by listening. At 3 AM, that is a wonderful place to be.

Practice What You Preach

Submitted By: Mary Lou Mennona, support group leader for Kingsport, Tennessee, and contact for Treasurecoast, Florida

Every time someone calls me regarding RLS, one of the things I always tell them that I have learned from the RLS Foundation research is: Stay away from alcohol, caffeine and sugar after 6 pm and especially before bed. Having these things will make RLS worse.*

So, [we] went on a vacation cruise recently and I got caught up in the fun of the evening. At dinner I shared a glass of wine with others – the one and only I had – I usually don’t drink at all, and then had a luscious, sweet dessert because everything on the ship menu looked so good!

I completely forgot to practice what I preached to others about these things being a “no-no” to RLS victims, and sure enough, I had a miserable night even WITH taking my meds... In fact, it ran right into the next day as we tried to watch a matinee movie on the ship. I usually don’t need my meds during the day, but I was so jumpy and felt like a wound-up spring ready to explode, that I knew I bothered the people near me, so I left the theater and walked and took AN EXTRA med.

Not only that, but I felt horrible all over. Even my hair was tingling and I just didn’t want to do anything! Depression can set in. My nerves throughout my body were vibrating all over and would not rest. Be careful! What the Foundation teaches us through all the research is so true!

I couldn’t believe that I had ignored my own advice! I never have this kind of trouble because I always keep a close eye on what I eat, my exercises, etc.

For those with RLS, don’t ever forget the debilitating effects of sugar, alcohol and/or caffeine, and learn from the information in [the Foundation's] wonderful quarterly newsletter, NightWalkers!

* For more information on what may exacerbate RLS symptoms, read our RLS Triggers publication in the Member Portal of our website.

Had a similar experience? Share it with us on our Facebook page or on the Foundation's discussion board. You are not alone!

Twenty years with WED/RLS

Disclaimer: Guest blog posts are the opinions of the authors only and not of the WED Foundation, its employees or its Board of Directors. Publication on the WED Foundation’s blog does not imply endorsement by the WED Foundation. Therapies and results described reflect the experiences of individuals and cannot be generalized to everyone with WED/RLS. It is important to talk to your healthcare provider and investigate concerns such as safety, efficacy and cost before making any changes to your treatment regimen. Stories may be altered for length or clarity.

I am a fit, healthy 65 year old woman and I’ve had restless legs for over 20 years, severe for about 10 years. My father and half of my siblings and some cousins also suffer from it to various degrees.

I’ll start with some history. I don’t know exactly when my RLS started but in 1983 (age 34) on a trip to Japan I was lucky to be invited to take part in a tea ceremony which required sitting still on the floor on my heels for a long time. My hosts noticed my agony (which I tried to suppress) and allowed me to relax but the tea ceremony, which was an honor that I had looked forward to, was torture for me.

In 1989 I had my tonsils taken out. In the recovery room I remember the nurse berating me because I was trying to move around and not lying still. I don’t know if I knew about RLS at that time but I wasn’t taking any medication then. During the operation something went wrong with the anesthesia and I was left with a huge bruise on my hand, which prompted the anesthesiologist to pay me a visit afterwards to explain that he had to do something unplanned in a real hurry. I don’t remember what he told me but in retrospect it might have been a reaction to the anesthetics due to my RLS.

Some time in the 1990s I became aware of Restless Legs Foundation, partly through rls.org. For a few years my symptoms were sporadic and stretching my Achilles tendons against the wall for a few minutes was usually enough. I thought my poor sleep was due to caffeine so I tried to eliminate it from my diet.

In 1990, while staying in a hotel with friends, I was prompted to take Tylenol PM to get a good night’s sleep. That was a big mistake but because it didn’t work, several hours later I took some more. There wasn’t any sleep that night. About that time I also developed intolerance to any nighttime cold medicine. It affected me in what I imagine being on speed would be like. I found out about the cold medicine the hard way too. Now I just use a nasal spray when I have a cold.

After going through menopause around 1997 I became very sensitive to temperature changes and still overheat easily. That usually wakes me up and triggers my RLS symptoms.

I had my thyroid removed due to goiter in 2004 and was careful to tell the anesthesiologist that I was extremely sensitive to some anesthetics. I couldn’t be specific because I didn’t understand why or the relationship to RLS at the time but he took me seriously and there was no problem. Previously my father and a sister had had severe reactions to anesthetics during surgery.

Gradually my RLS became worse until it was virtually every night, then several times each night. In 2006 my GP prescribed Sinemet, which quickly caused augmentation and diarrhea so I discontinued it on a regular basis. Because it worked fast, I would take a half a tablet if my legs started aching in a movie or concert or during a long car ride. Used this way, a bottle of 30 tablets lasted eight years.

During those years I just resigned myself to getting up at night every two hours or more often, stretching and doing yoga, listening to the radio and sometimes crying out of frustration. I was very sleep deprived and had big circles and bags under my eyes for almost the entire time.

In March 2014, I moved to a new city, and my new doctor prescribed Ropinerol which seemed like a miracle for the first few months. I graduated to taking .62mg (two and a half .25mg tablets) a few hours before bed. It didn’t last all night and, wary of augmentation, I went back to two .25mg tablets. I’m pretty sure I’m augmenting and am keeping a diary. There seems to be no rhyme or reason for how bad my symptoms will be.

About the time I started taking Ropinerol, I began to sleep well and realized my insomnia had taken on a life of its own. I was lucky to read a newspaper article about a promising book called The Sleep Book, written by Guy Meadows, a sleep psychologist in the UK. He says in the book if you have a physical problem such as RLS it needs to be sorted out first before trying his techniques. The book helped me get rid of all my disruptive insomnia-coping behaviors. I recommend reading it.

I walk for at least an hour most days, weather permitting. I also go backpacking occasionally. Someone will inevitably say something like “we’ll sleep well tonight!” but I think “probably not”. My worst night was a total of two very broken hours after an 18k easy but uphill hike. The silver lining was that I heard kiwis calling and saw a brilliant array of stars including the Milky Way. I would have preferred to be asleep but most New Zealanders have never heard a kiwi in the wild and I have several times.

I try not to let the RLS kick in before bedtime by not sitting for long periods and keeping busy. I try to focus on what I’m doing instead of on the pain, work on a project or task and keep busy. If I sit in front of my computer too long in the evening it is simply asking for trouble. Even five minutes too long can mean an hour or two of trying to calm my legs down.

I have painful symptoms many evenings before bed and get up at least twice for a half to one hour, and usually have pain upon waking in the night.However, after reading what others go through, I choose “moderate” for my level of WED/RLS discomfort on surveys. Right now I can sleep for three to four hours (when I’m lucky), then I get up and work on a jigsaw puzzle, sudoku, read or do chores for about an hour. I can usually get back to sleep for another two or three hours. I know it is better to get up as soon as I wake up with painful symptoms but even with pain it is sometimes hard to get out of bed—and then it gets worse and takes longer to sort out. If I have to get up a second time due to leg pain, I stretch and do yoga or read until I think it’s safe to get back in bed.

About three months ago my GP prescribed Tramadol to be used in movies or car rides. It didn’t work at all in those situations but I take it in the middle of the night in conjunction with Ropinerol - which I’ve reduced to 1.5 .25mg tablets to avoid augmentation. I’ll have to try to find something else for movies and long car rides. WED/RLS is a moving target so what helps for a day or month won’t necessarily keep working.

I often think of Scarlett O’Hara in Gone With the Wind who said: “After all ... tomorrow is another day!” because no matter how bad my night has been, it is a mini miracle almost every morning when I get up, get moving and face the day with no symptoms (except tiredness). I’m grateful to the WED Foundation and the discussion board moderators. Truly, we are not alone.

- Clare Strange (South Island, New Zealand)

Three years ago my WED/RLS that had been an occasional annoyance suddenly made my life very difficult. Plane rides were torture. I was only sleeping a couple of hours a night. Sitting on a couch to read or watch a movie at night became a distant memory.

I went to a neurologist who did all kinds of testing. My neurologist said the WED/RLS looked primary and prescribed a dopamine agonist drug. I began reading so much online about sufferers who had augmented on the dopamine agonist drugs. Other sufferers wrote about very troublesome side-effects. I had a bad reaction a few years earlier when I took statins, and was very reluctant to take another powerful drug.

So I researched online and found a drug called kratom. It’s the leaf of a tropical plant in southeast Asia. Wikipedia describes it like this: “Kratom behaves as a μ-opioid receptor agonist like morphine and is used in the management of chronic pain, as well as recreationally.”

So I researched.

I found that not only was it not FDA approved, the FDA had labeled it a drug of concern. But it was legal, and everything I found online indicated it was safe. Apparently, it does not depress breathing, like a regular opioid does. It is also hard to overdose on it, as you have to take so much that you become nauseous first and throw-up. There were a couple of cases of teenagers who had mixed it with other drugs, and one died. But, no matter how hard I looked, I couldn’t find any cases of anyone who had died just from kratom. This, of course, distinguishes it from prescription opiods.

So I decided to try it. I didn’t look at it as a good option, but it seemed a less-bad option than the dopamine agonist drugs, which I really did not want to take. At this point, WED/RLS had severely impacted my quality of life. I found kratom widely available on the internet, even on Amazon.com, and began ordering the powdered leaf.

It’s been over a year now. I take kratom daily and it has given me my life back. The strand I use—and that which at least one other WED/RLS sufferer I know uses—is the red leaf Borneo strain. I make up a dose by letting a gram of kratom sit in a cup of orange juice for twenty minutes, so it dissolves. Then I drink it. Usually, over 24 hours, I’ll take four or five doses. I also have a capsule-filling device I got on Amazon, and will make up capsules to keep in my purse or take with my when I travel.

In addition to the kratom, I take a good variety of vitamins and minerals. The only other thing I take that might be helping as well is L-theanine.

Last month I flew comfortably from Newark to Honolulu—a thirteen hour flight. I had one little period of mild discomfort when I woke up from a nap, but fixed that by simply walking to the restroom. I took a bit more kratom than usual for this trip—maybe as much as ten grams, from the time I left the house until we landed. I usually get six, and sometimes seven, hours of sleep every night. I usually wake up twice—since kratom hasn’t produced time-released leaves yet—and take another dose, and then perhaps walk around for five or ten minutes and then go back to sleep.

For a while, I took the maeng da strain. It made me constipated. After I switched to the red leaf Borneo, and started taking some extra magnesium, the constipation cleared up. The only side effect I notice now is that I get a headache if I don’t drink enough water. I’ve discovered you need to drink a good deal of water while taking kratom.

Kratom doesn’t make me sleepy or nauseous. It manages both the hyper-alert feeling as well as the creepy/crawly feeling of WED/RLS. I don’t feel high at all; in fact, I just feel normal, probably because I don’t take enough to feel high. With the low dose I take, I can drive and do everything that I normally do.

So far, I haven’t seemed to develop any tolerance for the drug and am taking about the same dose I started with over a year ago. But, as we all know, the disease is a moving target, and I expect as it worsens I’ll have to start taking a bit more. So far, all is really good.

I hope my story can help others.

                                        THANK YOU!

Father’s Day, like Mother’s Day, is a day that is dedicated to someone important in our lives – our dads. I think that our parents are the most influential teachers we have, and my dad is no exception. For example, from an early age, my dad has taught me things about using computers, how to hook up video game systems to the TV, and various other kinds of technology. Although I am no genius when it comes to technological things, like developing software, I know how to work with various programs, as well as how to generally troubleshoot problems (although there are still plenty of times when I ask him for help with whatever technological problems I may be facing).

When my RLS/WED first became a problem for me, my dad, like my mom, was concerned with what I was dealing with. One of the doctors I went to said that I may have something called Restless Leg Syndrome (RLS/WED), but that he didn’t now enough about it to make a diagnosis. Through extensive research on the Internet, my mom found the Restless Leg Syndrome Foundation. My dad selflessly stayed home to take care of my sister and I in order to let my mom go the national meeting in order to learn more about WED/RLS. This ultimately helped my parents find a doctor who could provide the care that I needed at the time.

My dad still cares about whatever endeavor I decide to undertake. Whether it is going to a concert or being my chauffer for the day, my dad does so much for me. I really appreciate all that my dad has done for me. Thanks for being the best dad in the world!

Traveling to different places, whether in the U.S. or abroad, has been a big part of my life, and I really enjoy it. But ever since I began dealing with RLS/WED, I’ve had to deal with some aspects of traveling in more proactive ways. As someone living with RLS/WED, it’s important to know whatever things may trigger your RLS/WED.

Whenever I travel, it is difficult to me to spend most of the time sitting in a seat for several hours at a time. [This actually became apparent to me when I was still in high school – sometimes my RLS/WED would be triggered because for a majority of the day I would be sitting in class, only to come home and sit some more while I studied or did homework. This led me to set aside time to walk on the treadmill in order to get myself to do something active. I find it is easy to lose track of how much time I actually spend sitting during the day, doing various things.

Once I started college, my mom found some stationary bike pedals for me to use when I needed to read or study, and I can definitely say they have come in handy more times than I can remember.] So I always make sure I get up and move around, whether it is a stop during a car trip or on a plane ride. If I am in a place where I have the option to take public transportation or I can walk to get from place to place, I try and do as much walking as possible. It is a great way to see a city, plus it will easily help you stay active. Interestingly enough, two years ago when I was in Europe for a couple of weeks, I walked a lot with the group I was traveling with and I slept so well during that time because I would be pretty exhausted by the time I went to bed.

Time zone changes, particularly those where there is difference of several hours, are also something I’ve needed to allow myself time to get used to. I have found that it is helpful to give myself at least a day to catch up on sleep in these instances.

I know that each time I travel, it becomes easier to handle because I am always learning what helps and what doesn’t.

Several years ago, I traveled 250 miles to visit my son’s family for a weekend to attend my granddaughter’s dance recital. I made it a practice of never missing one of those kinds of things. The program was held in a city auditorium. My wife and I sat in seats on the outside aisle, as we do most everywhere, so I could get up easily without disturbing other folks. True to form, after about 40 minutes of sitting still, my WED/RLS begins to take over. Our granddaughter was still further down on the program.

The side aisle was wide so I could easily get up and move over to the side near a door with a nice tall plant so I would not disturbed anyone. So I had thought. Then there was the usher. A tall nice looking lady, with a military presence, saunters up to me and whispers, “Sir, you’ll have to sit down. This area can only be used by persons in wheelchairs.”

“Ma’am, I have Restless Legs Syndrome and I’m unable to sit any longer but I want to see my granddaughter dance.”

“Well, you’ll have to get a wheelchair if you don’t want to sit in a seat.”

“Ma’am, I couldn’t even sit in a wheelchair.”

“Well, then you’ll have to leave. That’s the rule.”

Whereupon she ushers me out the door – all of which was more disturbing to the people sitting near my wife than if I’d stood and walked around the whole time. I stayed close to the door out in the mezzanine and was able to hear the music and determine that it was near the right time. Luckily, a man came out that door at the right moment and in I slipped. My granddaughter was on stage doing her thing. But before her part was over, I felt the presence of the military again. I said, “Ma’am, that’s my granddaughter up there and I’m staying for her performance.”

The lady left, but before my granddaughter’s act was finished, the usher returned with reinforcement and I had to duck out the door fast. I was miserable with my afternoon attack of WED/RLS, but their misunderstanding and refusal to listen made me even more uncomfortable. And this is not the only time that a similar thing has occurred. The misery of WED/RLS.

I remember when I was first diagnosed with Willis-Ekbom disease (also known as restless legs syndrome). I just started 6th grade, probably one of the most awkward times in a person’s life. Even though I felt relieved that the condition that I suffered from actually had a name, and that others had it too, I also felt conflicted – how could I explain to my peers why I sometimes nodded off in class when I could barely explain what WED/RLS was? I was also afraid that others might judge me for having a sleeping disorder, especially if they didn't know what it was.

As someone who has WED/RLS, I am faced with decisions every day that could potentially affect my sleep. Keeping a regular sleeping schedule (i.e. going to bed and waking up around the same time everyday) has been a significant help for me, especially while I was in college. For example, I knew that I could never pull an all-nighter (not that anyone should anyway) in order to cram for a test or finish a paper. I avoided late afternoon classes and too many classes in a row.

Personally, I like to think that living with WED/RLS is similar to living with a condition like diabetes – it might require changing your lifestyle a bit in order to allow you to live a normal life, but the important thing to remember is that it is doable. After I was first diagnosed with WED/RLS, I had to make some adjustments in my lifestyle in order to have a normal life. For example, I am more sensitive to caffeine, so I cut caffeine out of my diet (for the most part) – I don’t drink coffee or sodas. My only weakness is chocolate, which contains some caffeine, but as long as I’m aware of when and how much of it I consume, then I can sometimes avoid not sleeping well.

Having a positive attitude about living with a condition such as WED/RLS is another important thing that has helped me. I could sit around and mope all day letting my WED/RLS dictate my life, or I could take charge and live my life, with the awareness of how I can prevent having a sleepless night. WED/RLS is certainly not the worst thing in the world to deal with you – just need the right perspective.

The subject of sleep is something that I find interesting (for example, I always enjoy reading tips on how to get better sleep or why we dream and what they mean), so it’s kind of ironic that I have a sleeping disorder. I also believe that sleep is one of the most underappreciated aspects of life. So many important things happen when we sleep in order for us to function properly the next day. It is only when you or someone close to you suffers from a sleep disorder that you see how much sleep deprivation can affect a person’s life.

3 important life lessons I have learned from living with WED/RLS:
1. Learn to be your own advocate – don’t expect others to stand up for you.
2. Be proactive – no matter what you are doing, making sure you will be able to get quality sleep is important to take into account, so plan ahead whenever possible.
3. Every person must deal with some challenge – whether it is medically related or not, and whether they are willing to share it or not. Everyone has their own cross to bear in life.


About the blogger: Last May, I graduated from college with a Bachelor of Arts and I'm planning to attend graduate school in the fall. In my free time I enjoy reading, watching movies, doing arts and crafts, going to concerts for bands I like, and spending time with friends and family. - Ali Dzienkowski

I traveled by air to most of the national WED/RLS Conferences and Support Group Advisory Board (SGAB) meetings which were held while I was a Support Group Leader and member of the SGAB. One conference was held in a hotel in Los Angeles, CA. First, I had to fly from Jacksonville, FL to Charlotte, NC. It wasn’t bad. However, the 4 hour flight from Charlottee to Los Angeles was criminal. I told the flight attendants that I had requested an aisle seat because I didn’t expect to be sitting in it very much. Instead, I would be poking my legs out into the aisle often because of my WED/RLS. They understood, so they said, and asked me to just watch for other people in the aisle. I didn’t want them to think I was some kind of terrorist, spending time in the restroom to assemble a bomb or something. So during the flight, I spent a good bit of time walking up and down the aisle and standing in the galley with the attendants. By the end of the flight some of the passengers and all of the flight attendants were on a first name basis with me. 

Donna's Story

I've suffered from WED/RLS my entire life - since I was a child.

I was always being told to sit still, which of course I couldn't do. I'm 63 years old now, but when I was about 50 I finally couldn't take it anymore and my general practitioner referred me to a neurologist for treatment.

I was going for several days without sleep. My condition was affecting my job performance and home life. The neurologist started me on Requip and almost immediately I was getting 7-8 hours of restful sleep a night for the first time in as long as I could remember. However with increased dosages the Requip, the medication soon started losing its ability to relieve my symptoms. My doctor soon switched to Mixapex. I started with low doses, then progressed to Mixapex ER 1.5.

I was still experiencing what I refer to as breakthroughs (sleep) during the night so we added another .5 to 1.0 mg at night. This helped most nights, but I soon could not find any relief during, and right after a full moon. I also find that drastic changes in atmospheric pressure changes impact my WED/RLS. I’ve tracked/documented these symptoms. In some cases, I’ve gone up to 5 days without any sleep.

I should also mention that my maternal aunt and paternal grandmother suffered from WED/RLS as well. This condition causes depression, sleep deprivation, confusion, and all around irritability. I should also mention that twice during major surgery and recovery I have woke up while under anesthesia due to the WED/RLS severity.

I hope that this will assist you in your research.