September 4, 1995
Dear Pickett Guthrie,
You have been a great inspiration to me, and I'm sorry it has taken me so long to tell you about it. I talked with you on the telephone last Fall, just before the article on Night Walkers came out in Modern Maturity. I had planned to send the enclosed information to you right away, but since my schedule was so full, and you were receiving thousands of letters from others, I put this off.
I have taken a leave of absence from Assistance League and the Hospital Board, and have retired from full time teaching, So now I must tell you my story;
I am a Professor Emerita at Whittier College in California and have had RLS all my life. My father had it,too, and we called it "The Wiggles". I can remember my mother having to sit with me in the back row in church on Sunday nights, so that I could walk around during the sermon. Since my dad was the preacher, he didn't have to sit still.
Sometimes Mother would rub my legs, hoping that would help. Actually that made it worse, but I tried to hold still so I wouldn't hurt her feelings, and then I felt like my head would explode.
I have noticed that only one leg is effected at a time. I never know which it will be. Now that my arms have the same sensations, it's either my right leg and right arm, or both arm and leg on the left side. My neck often gets tight on the same side that is "frantic" ("restless" doesn't describe it) and sometimes I feel if I could just find the right spot on my neck to push, the frantic feeling could be controlled. However, I've tried both acupuncture and acupressure and received no help at all.
The only immediate relief is to stand up and get my weight on my feet. Walking, jogging in place, riding my stationary bike, or putting my pillow on top of the TV or book shelf to try sleeping standing up, will help for awhile. I have also found combinations of medications that will give me 4 to 6 hours of sleep a night. These need to be rotated or changed after a period of time.
It wasn't until I was pregnant with twins (47 years ago) that I described this situation to my doctor. He had never heard of such a thing, so therefore it must be all in my head.
Since that time I have shared my RLS with every doctor I've seen, no matter what my ailment, or the doctor's specialty, including a hypnotist, a psychologist, and a chiropractor. Some ridiculed me and told me to go without sleep for a couple of nights and I'd be fine.
Our family doctor in the 1960's really wanted to help me (especially after my husband talked with him) and therefore he prescribed every sleep medication on the market. They all made me worse. Then he decided to try Valium. It worked beautifully for several years (as long as I didn't have to get up early the next morning), and then after its effectiveness wore off, it has had the opposite reaction ever since.
I have been to five Sleep Disorder Clinics in California: Scripps in La Jolla, UCLA, UC Irvine, Yorba Linda, and presently I go to the Gallatin Medical Group in Downey.
In January, 1984 I stayed all night at the UCLA Clinic with electrodes attached to my head and face, tubes in my nose, and a video camera in the wall to record my 7 hours in bed. Since the rule of the clinic was "Except for going to the bathroom, you must stay in bed throughout the night, resting quietly if you are awake" I must have gone to the bathroom at least 20 times (a slight exaggeration). Anyway, the poor technician on duty that night had to disconnect and reconnect those electrodes all night long. There was no way that I could lie still.
The diagnosis was Nocturnal Myoclonus and Restless Leg Syndrome. The recommendation was to take Clonopin at bedtime.This didn't help even after increasing the dose at the doctor's suggestion. I discovered on my own that Darvon and Tylenol with codeine helped when another doctor prescribed them for back pain.
In 1987 I had back surgery for Scoliosis and Spinal Stenosis at which time metal rods were inserted from the top of my spine to my waist. Fortunately, the Vicodin and Percodan, given to me in the hospital, helped the pain AND the restless legs. However, doctors hesitated to prescribe those drugs unless I was in pain.
In 1988 I went to the Sleep Disorder Clinic at UC Irvine. Again the doctor felt I should try more Clonopin, more often, and for a longer period of time. It still didn't work.
In 1989 I had two more back surgeries, extending the metal rods all the way down, and adding a metal plate in my lower back. This time I was in the hospital for ten weeks and if it hadn't been for pain killers, I would have gone out of my mind, NOT due to the pain. I feel that RLS is much worse than any surgery or other challenges that I have had in my life.
Again these doctors were hesitant to continue pain medications when my back was healed. I called the National Sleep Foundation and received a new list of clinics. The closest one is the Gallatin Medical Group in Downey which has recently merged with the Presbyterian Intercommunity Hospital in Whittier (my home town). Since I was on the Hospital Board, I chose to go Dr. Mark Buchfuhrer at Gallatin. He has been very helpful! He understands the problem and is willing to work with me.
When I asked about a support group, Dr. Buchfuhrer suggested calling Scripps, and they suggested calling Pickett Guthrie in Raleigh. So I did, and there you were: charming, cheerful, and so very helpful!
After those two calls to you, I felt so excited and encouraged! I didn't mind getting up at night nearly as much when I knew that others like you, were also working on a solution. All my life I have wanted to find some source of help that I could pass on to others.
Now that I have more time, I have been eager to start a support group in Southern California, (Los Angeles and Orange Counties) and have had a wonderful conversation with Thelma Bradt. She is sending me some materials and I hope to be working through Presbyterian Intercommunity Hospital.
Thanks to the nurse at Scripps, my doctor and to YOU, I am presently taking a combination of Permax, Vicodin, and Restoril at bedtime and I am sleeping much better. I also find that taking one half a Vicodin when going to the theater, helps me sit still longer, but I still try for the aisle seat in order to stand up part of the time.
Thanks again for all of the wonderful things you are doing for so many of us.
Sincerely,
Elizabeth Lamb Tunison
My LEG acy
by Elizabeth Lamb Tunison
FOR MY CHILDREN AND ALL WHO SUFFER FROM RLS
MAY you never be frustrated, frantic, desperate, disgusted, or
hurt by your family, your friends and doctors, because they just
don't understand what you are talking about.
MAY you never feel like crying or screaming because they give you
"well-meaning" advice like:
"Sit down and relaxer (I can't sit still and it's when I
try to relax, that it gets worse.)
"If you'd get up earlier in the morning, you'd sleep better
at night. (The morning is the only time I can sleep.)
"If you don't get enough sleep at night, take a nap in the
afternoon". (I go out of my mind if I try to lie still
in the afternoon.)
"Take Quinine" "Take sleeping pills" "Take iron" Take
hot baths" (I did, I did, I did, and I kept getting worse)
MAY you never be ridiculed by your doctor and told to :
"Go without sleep for a couple of nights and you'll be
fine" (But Dr. _____ I've had this all my life.) "You're
just imagining it because you read an article." (This time
my husband lost his temper.)*
MAY the work many of us are doing now to educate our legislators,
doctors, the public, and your friends, make them more supportive
and understanding.
AND MAY the research taking place in clinics all over the world,
find the cause and cure for this nightmare, so that you'll never
have to:
Walk out of the theatre in the middle of a great show,
Get out of.bed over and over again during the night,
Stop the car to run around it several times,
Get in the way of flight attendants when flying,
Stand up to read a book, the newspaper, or to watch TV.
Instead,
MAY you:
Have a good night's sleep every night
Wake up refreshed
Relax in a recliner to read a good book
Doze off for a peaceful snooze in the afternoon
Read the newspaper and watch TV sitting down
Travel the world with ease.
*I never saw my husband so angry. It was just a few months later
that he died of a heart attack.