The following are letters from patients with RLS describing their symptoms and treatments that have helped them. We hope that these letters are of benefit to other people suffering from RLS. We welcome everyone to E-mail us with your own descriptions of your personal symptoms and remedies.
I have probably had RLS since I was very young but it was only in the past several months that I really knew what was going on. I have been tired for my entire life as far back as I can remember. My x-wife always complained about my nightly kicking as did my kids when they were young enough to come and sleep with us.
Last December I became involved in a relationship with a wonderful lady and she stayed awake nights to monitor my situation. She would describe to me the next day what was going on during the night with not only my legs but with my other limbs and at times my who body jerking. I had always assumed this was a stress related situation and at times thought it was only happening when I did not work out enough.
These explanations were not good enough for her and she set out for the library and found out about RLS. She then sent away for information from the RLS Foundation and I am now set with an appointment at UCLA at the end of this month, (I also have sleep apnea too).
After much reading my girlfriend has found out that drawing a very hot bath for me immediately before bed (if too soon before bed this does not work at all) and I stay in the bath for about 10- 15 minutes. I will never have leg or limb movement during the night if I take the hot bath. Unfortunately I have found no cure for the feeling during the day except getting up and walking around the office at regular intervals. If my walking around the office is not at regular times then the sensations begin and it takes longer to relieve them.
I have a very difficult time driving to and from work, as I tend to fall asleep. I leave for work at 7:00 AM and by 7:15 AM I find myself drifting all over the road (I have a long mountain road to travel). I have not found a way to cure this problem. If anyone out there can help me with it, it would be greatly appreciated before I have a head on collision.
My father had this same problem from what I remember and what my mother has told me. She never knew what it was although he was an alcoholic for a long time and died of a heart attack I was wondering if the alcoholic gene that is hereditary could have something to do with me having RLS, as I do not drink at all, I am allergic to alcohol, but I could have that gene passed to me from my father. Just a long shot but looking for anyone's thoughts on this theory.
I am Male, 53 yrs. old, live in Thousand Oaks, California.
August 2, 1996
Is there a place on the net that people share what has worked for them? I am new to the
internet and am just learning my way around. I am 46 and have had RLS for almost 30 yrs. I
wonder how I made for the first 25+ years when I had no idea what was going on. The first
time I heard the word (RLS) I went to the library and sat on the floor reading and crying,
as someone put into words the agony I thought was in my head (as my doctor had told me).
Now I get some relief from ayruvedic herbs ( arjun and vata chintimani).Except for peoples
experiences, I really don't know what I'm looking for, except to express appreciation that
I am no longer alone.
Candace
Added note from Candace
Anyway, my symptoms for the last 25+ years include difficulty in getting asleep because of the jerking (20-30 seconds apart) of one or both legs.
Falling asleep at night is usually very difficult. Just as my body would relax, my leg ( often the left) will jerk and I will come out of that peaceful place only to try again and have the same thing happen. It felt very much like a torture technique I had one read about. Oh, all those years of feeling like I wanted to chop my legs off and not knowing why!
I was on Xanax on and off for 10 years and I realize now that the reason I was able to
function was because of that drug. Today I choose not to be on something that addictive.
Most pills make it worse. Aspirin, Q-Vel, Quinine, and especially antihistamines. Moving
around is the only thing that brings relief. I remember one time being so confused and
angry that I started hitting my legs with my fists. I have a new symptom now, and that is
aching legs that occur after a bad night of when I have chosen to be on prescribed
medication for migraines and allergies. When I feel that tingling in my legs during the
day, or sudden sharp spasms in my foot, know I can't try to lie down until evening and
then it will be a struggle. My monthly period also is a difficult time. The only relief
besides Xanax has been from an ayurvedic doctor. When he told me it was the result of too
much "wind" in my legs it was the first explanation that "felt "
correct. It does feel like too much air-either that of a thousand angry bees buzzing
around my lower leg! The herbs I take from him help more than anything else so far. One of
them, I mix in milk and simmer for thirty minutes (arjun) and the other is a small pill I
must send away for, called vata chimtamani ( this works the best). I have also found that
the more fat and the more vegetables I eat-the better my legs are and the more exercise I
do- the more active my legs are at night.
Candace
Chris T., 35 year old male from La Canada, CA
Symptoms: Was suicidal depressed, and slept 12 to 15 hours a day even on Prozac. Sleep
Study showed PLM every 30 seconds keeping me from deep sleep. Constantly rub calves,
ankles.
Remedies: Prozac 40 mg in morning, Sinemet CR 50/200 2 hours before bedtime
Rhonda O D, 40 year old female from Fullerton, CA
Symptoms: Sort of like, it feels as if the left legs is pregnant. For you u males who have
RLS, this sort of what it feels like to have a life movem ent inside our bodies. Or as if
there is a snake squirming around inside stuck and cant get out, worms moving around/
crawling. Symptoms are - pulling, tingling, wiggly, throbbing, burning, & painful,
shocking, (thigh and foot areas)
It is difficult to S_L_E_E_P, sit, and stand, it makes me depressed and have come
close to death 3x's, by trying to take my own life, (also I have R SD (reflex sympathetic
dystrophy)
Remedies: Walking, move the right leg helps to control the feeling in the left leg with
the RLS. Stretching, swimming, warm baths, and massaging the are the best so far. Still
working on the medications at this time.
Klonopin works for sleep, (some times) I'm taking at this time Neurontin 300 mg. ( Don't
know yet if it will work)
Mary Y. , 46 year old female from Whittier, CA
Symptoms: Crawling, "butterfly" feeling in knees, under kneecaps. Must move
legs - gross movement. Can't lie down. Will wake me up, & will stay up till 4 or 5
a.m. - can sleep in the afternoon, but not convenient. Just started to notice while on a
plane. Some little pains in sides of knees. If I go to sleep immediately when tired, I'm
O.K. ( I think) but a little overtired and I'm doomed.
Horrible in pregnancy
Remedies: None - some relief if massaged, caressed.
Pet Name: "Mom's Leg Thing"
Charles B., 58 year old male from Rancho Santo Margarita, CA
Symptoms: Hot Upper Legs
Electricity running through legs
Jerking Legs
Remedies: Klonopin works best for me so far.
Earl O S, 80 year old male from Whittier, CA
Symptoms: Both R & L lower legs pain after going to bed. OK during the daytime. No
pain - except walk more than 1/2 mile. Caused by 2 left sided strokes & severe head
problems. Acupuncture in 3 treatments clears my head - going to Dr. Ming ???(?????????) 5
years from China - the best.
Remedies: I take one Klonopin 1 hour before going to bed. No leg pain and can get 4 hours
of reasonable sleep on 1/2 Pill .05. Do twist a lot d uring sleep ( unknowingly). Have
tried several recommended medications suggested by other doctors - did not cure leg
pains.
J. F. R, 63 year old male from Los Alamitos, CA
Symptoms: Dull or sharper pain that feels like it is centered in the sof t muscle at the
back of the knee. Irresistible feeling that I have to mo ve legs.
Remedies: Stand or walk 20 minutes to one hour. Sinemet helps.
Elaine Q, 65 year female from La Habra Heights, CA
Symptoms: Severe Restlessness and pain in legs and on occasion in my arm s. These symptoms
are experienced during the night and daytime.
Remedies: I've tried everything I know to try from walking to exercise, etc. etc. I've
taken Klonopin (4 years), Sinemet (short acting - 1 year, too much rebounding) and am now
on Permax - 0.05mg - 3 tablets at night). Condition is not under control!
P.S. My mother had RLS and used the term "Heebee - Jeebees" to describe it!
N. Maloney, Age 82, Female, Arcadia, CA
SYMPTOMS
I get pricks and stabs of pain, often starting in a big toe. My skin tingles, much like a niacin flush but more prickling. I get aches in my inside thighs and can pinpoint the source and then massage furiously. I have it in my face and scalp. It feels akin to a sunburn at times. I was forced to go off all medication for pain and sleep by an uninformed doctor. I did not sleep for 51 hours - at which time I took the initiative and took medication. I have found a new doctor. The doctor I dropped said it didn't hurt me not to sleep for 51 hours!
REMEDIES
I rub down my torso with body lotion or alcohol. It seems that when it routs me out of bed, if I eat something, in due time it lessens. I eat things like popcorn, celery and raw carrots. I used to have relief from about 5:00 am to 5:00 pm. Now I often have it unrelenting 24 hours a day. Darvon and/or Vicodin help for the pain; Restoril for sleep. My doctor is very timid about prescribing enough. Therefore, I am chronically miserable about 20 or more hours a day.
R.M., Age 35, Female, Sherman Oaks, CA
SYMPTOMS
Aching legs - not bone, not muscle aches; deep dull incessant aching when lying down ready to go to sleep. Sugar may make it worse / Sitting too long makes it worse / sometimes jerky while sleeping - though not often.
REMEDIES
Going to bed late enough to be very tired / Shaking my feet against each other in a rhythmic motion to get to sleep / tossing and turning / Have not addressed prescription remedies yet - need that!
Florence S. Age 81. Female. West Los Angeles, CA
SYMPTOMS
Legs use to jump only at night but now it's 24 hours a day. It is not painful but it jerks the entire leg from foot to hip. I even feel it in the rest of my body. The only thing that helps is getting up and walking and swinging my legs back and forth. I do not sleep more than 1-3 hours at a time.
Debbie S, Female, Los Angeles, CA
SYMPTOMS
I call it "that feeling in my leg", as did my mom and my daughter. As soon as I try to rest I feel a sensation like water running through my legs or a current. Lately, during the day, I have pain in the entire leg. RLS is in right leg mostly with sensations in calf. Sometimes RLS is in right arm. I have been up 30-40 hours without sleep. Often sleep 6:00/7:00am - 2:00/3:00pm.
REMEDIES
For temporary relief: playing games on PC , pounding on leg , stretching leg and tensing till it hurts, or one leg "squats".
Mary S, Age 77, Female, Whittier, CA
SYMPTOMS
I feel like an electric current starts in my ankle and travels to my thighs in about 3 or 4 seconds, then my entire legs jerk (usually involves both legs). I have this 24 hours a day but usually most severe and harder to control after 4:00pm to 2:00am I call my disorder my "dancing legs" (wish I had a partner to dance with!)
REMEDIES
I take Permax and Vicodin with quite good results. Permax .05 taken at bedtime with 1/2 Vicodin - Permax .05 when awake between 2:00am - 4:00am, sometimes 1/2 Vicodin and Permax .05 around noon or earlier if I'm going out - sometimes I have to repeat late afternoon.
Jannell B, Age 47, Female, Anaheim Hills, CA
SYMPTOMS
creepy - crawling - worms - in my blood stream, only in the evening.
REMEDIES
I have had RLS all my life. The first I remember is when I was small and would take naps & my mom would come in & put her leg over mine to keep my legs still so I would settle down & sleep. I was diagnosed about 10 years ago. I've tried lots of medications - Klonopin, Sinemet, Sinemet CR, Permax, Xanax, & several others I've forgotten. I now take methadone. I have been taking 5 ml in the evening for 6 1/2 years. I don't have any side effect that I'm aware of. It seems to be a controversial drug because of it's other uses. So I don't bring up that I take it to most people. It's worked wonderfully with no increased dosage in 6 1/2 years. Why are most doctors reluctant to discuss methadone with other patients I have mentioned it to recommend to their doctors, if it works so well. My doctor at Kaiser Anaheim, Neurology department says that it's non-addicting for what I'm taking it for. Is this true?
Lola S, Age 76, Female, Whittier, CA
SYMPTOMS
Uncomfortable feeling in legs mostly at night - sometimes in my arms and under the skin, but not in the bones feeling. Upper legs as well as lower are affected. I do not know if it is connected, but recently I have been waking feeling panic and find it difficult to breathe.
REMEDIES
Tylenol PM helps me to sleep. I am not taking anything else at this time. I have tried acupuncture and it seemed to work but proved to be very expensive. I have taken magnesium before retiring at night which helped for a time. Perhaps I needed larger doses. The discomfort is relieved when my husband massages them.
I have suffered periodic RLS for 45 years, since early childhood. Like others, I tried
everything from massage to punching to exercise to various unguent rubs to walking, but
the only mechanical protocol that eve seemed to do anything was a 15-20 minute soak in HOT
water immediately before sleep.
Dr. Steve Poceta at Scripps Clinic suggested adding Klonopin & Sinemet to the narcotic pain reliever I used following a severe accident - which exacerbated RLS also - & the 3 meds gave me some relief for the 1st time in my life. I do not take them regularly; I now use Klonopin & Sinemet (I stopped the pain med) whenever I experience a periodic attack. The results are not wonderful but they're better than any alternative I've tried so far.
I truly hope this helps someone.
Regards,
Dennis F, Ph.D.
Hello from Adelaide, South Australia. I came across your site by accident and was very
interested in what I read. I was wondering if it is possible to have RLS intermittently as
it describes to a tea what I was experiencing when I was pregnant. Sitting down at night
mostly, I would have to constantly move my legs, I tried putting them up, then I would
have to move them back down again even walk around for awhile with a feeling of pins &
needles, it wasn't because of the added weight through pregnancy as it happened in the
first few weeks too. Anyway I was just curious to see if it was possible. I feel very
sorry for those of you who suffer from it continually.
Danni G.
I was diagnosed with nocturnal myoclonus by a sleep specialist 2 years ago. He mentioned
that it was also known as RLS. Before the diagnosis was made, I went 3 full days without
any sleep! My internist just kept saying it would not kill me. What he failed to see was
that it will because I will kill myself if I have to spend the rest of my life with no
sleep!
As far as symptoms are concerned, I just get a tingling in my legs once in a while. The major symptom is dozing off and awakening a few seconds later (wide awake.) Absolutely no sleep. The sleep specialist said this is caused by a malfunction in the brain which makes me go from stage one sleep directly to stage five which tells my brain it is time to wake up.
Klonopin helped tremendously for several months but then slowly stopped. I was also on a regimen of Klonopin and Sinemet CR which did absolutely nothing (got no sleep at all---just felt drugged all night.). I have also been on anti-depressants which worsened the condition. I am currently taking Xanax and melatonin which allows me a few hours sleep but I can tell my body is adjusting to the Xanax as I am beginning to have more and more nights with no sleep at all.
The sleep specialist I saw said that the leg jerks are a result of the imbalance of the brain and are not the cause of the awakening. I have since moved from that state and am seeing an internist who knows nothing about sleep disorders and insists melatonin will cure this madness because it is probably just that my sleep cycle needed adjusting. I am out of money now and no insurance because I can't keep a decent job because I can't think or function any more so I can't get anymore "medical advice". Do not know what to do any more.
I am a 47 year old female who lives in Rochester New York.
JH
Saturday, September 7, 1996
After completing chemotherapy and radiation, I started Tamoxifen in June. I have had RLS for as long as I can remember. For the past few years I have taken Klonopin. Then in July the RLS became more pronounced and in August it expanded to 24 hours a day. Since the end of July I have been seeing doctors at a sleep disorder center but as yet the medications (Sinemet or Sinemet CR) have not been successful. Has anyone with RLS taking Tamoxifen experienced a similar acceleration in RLS symptoms?
I've had restless legs all my life, my father had them, and I truly understand the need for support. I have discovered melatonin - and now I sleep.
But your web page is well put together, informative, and I may come to the meeting in November.
Also, I work for a foundation - Hope for Hearing foundation and I am just getting ready to put a web page up for us - and people have been asking how a foundation can help people by being on the internet. Your web page and the page in Toledo are perfect examples (I'm talking about financial justification to board members)
So - Keep up the good work.
Christine C.
Executive Director
*******************************************************
HOPE FOR HEARING FOUNDATION - UCLA
Working towards the day "..... when the ears
of the deaf shall be opened." (Isaiah 35:5)
**********************************
Chris M., Raleigh, NC; 42 yr old male.
I have had RLS since childhood, but within last 8 years it has not let up. I suffer from deep muscle aches behind the knees and a constant need to move those legs. I find myself rhythmically shaking them throughout the day, especially after sitting for a time, like at church, at work, watching TV, etc. I spent 8 years searching for the answer to my leg pain, leading to 9 knee surgeries, multiple neurological tests, MRI's, cat scans, chiropractic visits, etc, spending in excess of $100K. After much pain and misery, I was lead to discovering RLS, and wept in finally finding the answer and hope for help. I am now taking a combination of Neurontin and Darvocet, and it works! Praise God! I am also very active, exercising strenuously 4 times a week and careful to eat a natural-food based diet.
My Dad had RLS throughout his life until he began taking Sinemet for Parkinson's. My 8 year-old son complains 5-6 times a month of RLS pain.
Thank you!
I just discovered this site. While my doc has diagnosed and prescribed for me and my RLS, I had no idea that there were so many others out there like me. I am on Sinemet, and most of the time, it works. However, in the last few weeks, it seems less effective unless I up the dosage. I have found that heat helps--hot baths or lots of extra blankets across my legs. During the last week, I was awakened during the night with what can only be described as a panic attack. This has never happened to me before--is it related? I do remember having lots of leg pain as a child--my mother described it growing pains. Then nothing for years until I underwent Chemotherapy for Hodgkin's Disease. One of the drugs caused some fairly severe nerve disorders but those have diminished over time. Now, I wonder if that somehow triggered the RLS. I do know my father complained of leg pain--which he thought was arthritis--but now I suspect was RLS since he would rub his knees and legs and bounce them up and down. What I do not remember was that he complained of his sleep being interrupted.
I also used Klonopin for a time to no avail. Vicodin works well--however, both my doc and I are reluctant to use it over a long time. I have not tried any OTC drugs except acetaminophen, ibuprofen, and naproxen sodium. They have not been effective.
Most of my symptoms occur at night. I usually fall asleep quickly and am awakened after 2 to 3 hours and often remain awake for 2 to 3 hours and then will sleep again for an hour or so. My sleep between 4-5 am and when I get up is usually most refreshing. I cannot nap during the day. Occasionally, I have had the same symptoms in arms and hands and that typically occurs during the day.
Caroline C., Age 53, Visalia, CA
To whom it may concern:
I would like to add my experiences with RLS to amplify some of the letters that I read on your service.
I have found that I cannot take any kind of antihistamine. If I do, I stay awake most of the night with RLS. Antihistamines seem to be especially bad, but I have also found that amitriptyline (a tricyclic antidepressant) produces even worse RLS. Amitriptyline is absolutely the pits for me. The finding suggests that anyone who suffers from RLS should take stock of what over the counter medications and prescription medications that they are taking and talk to their doctor about them. My doctor recognizes RLS as a bon a fide condition. My mother, who also suffers from RLS occasionally, finds that acetaminophen aggravates hers.
I am a 63 year old male who really began having problems with RLS about 10 years ago, but find that most of mine is medication related. Needless to say, don't discontinue any medication until you have talked to your doctor about it.
Subject: RLS
I experience leg jerks , multiple fasiculations(twitches)10 to 15 per second throughout the body, cramps etc etc. I have been using quinine(325mg) and have found it to be effective especially if combined with an over the counter antihistamine (Benadryl etc). FYI >>>Q-VEL is 85 mg quinine + 400 Vit E.
I read your RLS page with great interest. I've had this problem as long as I can remember. I can especially identify with people who would strike their legs in anger; and I would also go as far as placing belts at the top op my legs as tight as I could stand. I also have adult Attention Deficit Disorder, which was recently diagnosed, and was prescribed Ritalin @ 40 mg a day for it. As odd as it sounds, my restless legs disappeared. Before you brush this off due to the negative publicity that Ritalin has had lately, please remember that tri-cyclic antidepressants such as Xanax, imipramine and desipramine all produce the same effect (physiologically) as Ritalin, just through different methods. Anyhow, for what its worth, it really helped me a lot. Thanks, and good luck to the rest of you :) -Nate
I have just recently been diagnosed with RLS and was shocked to hear about it. I am
suffering from Post Traumatic Stress caused by a camper fire that killed my husband and
burned me. This all happened 7 years ago. Since then I have re-married and tried to go on
with my life, but the stress still comes out physically. I am taking prozac 20 mg. at the
moment and I can't tell you how it helped the depression from PST. Does anyone know if RLS
is aggravated by Prozac or can it cause it. I am taking 1/2 a .5mg Klonopin but feel tired
during the day. I go right to sleep at night and about 2 hours later I'm awake sometimes
from my achy legs and left arm and some times just because. I have to say I am happy to
find a place like this on the internet. Keep it up.
Denise from Huntington Beach
Thanks for the note. Your message confirmed what I have been thinking: that while I have the Nocturnal Myoclonus (is this the same as Periodic Movement Disorders?), I do not have the symptoms associated with RLS. I don't have the urge to do anything during my events, except lie very still and wait them out. MDs have asked the "Do your legs feel crawly?" type questions and my answer is always, "No."
I just got up from attempting a nap after an especially tough night, but I couldn't get to sleep. Right at the moment of sleep, there they were again, those jerks and twitches that mean Drop/Sleep/Jerk/Awake. For me, the irony is that until this happened/began, I was one of those "sleeps like a baby" folks.
IF I go on Sinemet, I will certainly let you know. I'll keep in touch no matter what course I take re prescriptions. I got on the net as I won't put anything into my system--MD referred or no--until I am comfortable with the info I have re that RX. A pharmacist I respect told me today that the Sinemet CR would be helpful for only a short period of time and then, probably not. So where does that leave a person?
Question: It seems from my brief research that RLS is both genetically inclined and also rather long term in duration. Do you know about Nocturnal Myoclonus in these regards? I haven't heard anything about it being genetic, and I don't know anything about the chances of "outgrowing" (maybe just outlasting) the syndrome, disorder, symptom.
Thanks--I'll keep you folks posted. I may have to start a support group for "my kind" here in Central Michigan--
Joan M.
I am 32 years old and have suffered from RLS all my life. My father would have run around the house all night trying to make my legs relax. I just recently discovered that this was something more than just "in my head". The news that this was a real disorder brought me to tears. My doctor has put me on Klonopin, and it is effective about 50% of the time. The only medicine that is 100% effective is a narcotic such as hydrocodone or codeine. The problem with it is it can be addictive. I also run 40 to 50 miles a week. I started this in an effort to make my legs feel fatigued. Thank you for being here. At least I know there are other people who can listen and understand that I'm not a lunatic!!!!!.
You are all in my prayers. My only hope is this syndrome can be controlled and I don't lose my wife and child over this.
Chris W
All the horror stories are true about restless legs!!! But, I finally found a doctor, a
neurologist who is willing to work with me and through the internet I copied some cures
for her so she wouldn't think I was an addict-----and now I take 2mg of
clonazepam and
1000mg of vicodin each night and have decided not to kill myself.
She is also willing to increase the dosage or switch to methadone or just about
anything that will work. Praise God for this understanding Dr. If there is
anyone who would like to talk to me about some of the other things
Hello to all my sisters and brothers who suffer from RLS,
I have had RLS nearly all my life, but only recognized it about 6 years ago. I am 33, and now expecting my first child in May. The Fontana Kaiser Medical Center is my health care and I must say they have been HORRIBLE at best. Yes, Darvocet worked, but if I took more than two a week, I felt sick all the time. Pain killers like that can work, but are addictive. The brain damaged neurologist I saw wanted me to try a drug that would damage my liver and I would have needed constant screening to monitor it. I said no. I wanted some natural therapies, but if she couldn't find it in her PDR, forget it. She said she had lots of patients with RLS. I pity them. Next my family doctor prescribed Klonopin. It's addictive. It worked. But then it didn't...and I stopped dreaming and I felt weird all the time. I was horribly addicted and it causes birth defects. We wanted to have a baby. My mom and I talked a lot as I was literally awake for nearly 5 years and very suicidal. I slept maybe 3 hours a day. I cannot hold a regular job, I work for myself as a graphic artist, and it's hard.
My mom and I realized that she had the same problem. Her legs would drive her nuts when she was younger. Her old time doctor gave her a calcium shot and Voila! instant relief for a long time. She also started taking calcium tablets. No more problems. She said, ask your family doctor for a calcium shot. I did. He said that was the stupidest thing he ever heard and refused. Said stop taking the Klonopin for a week then get back on. The worst part was the pharmacy at Kaiser treated me like a drug addict. If I tried to refill the Klonopin sooner than a week of running out, they called the doctor and refused. I'd have to explain I was going on vacation, needed it sooner and that I'm not selling it on the streets!
My mom was so upset at Kaiser's incompetence and we still are, that she bought me a big bottle of Calcium, magnesium, Zinc, Vit A and D combination. She buys it at Cosco and it is the Kirkland brand. It is quite reasonable. I take 3 of those a day and have much better results than the Klonopin and now I can have a baby. Ironically my Ob/Gyn was astonished at my story and said, of course calcium, that is the thing we use most for RLS, my own mother has it. I just wanted to start screaming. Where was she 6 years ago? Yes some nights are still bad, like if I go shopping for too long, get too much exercise or stress. I try to avoid sugar, caffeine and chocolate. I know the pregnancy makes it worse, but I have not wanted to kill myself over it since I got the calcium tablets.
I read what everyone else said and two things were interesting. One man mentioned the alcoholic gene, both my mother's father and my father were alcoholics. Hmmm. Also, I was in an accident and took Darvocet for many years. I head that those can worsen RLS. It is just me, but I avoid artificial stuff if I can, like NutraSweet (equal) seems to make me feel worse, WAY worse and saccharine, oh god don't do that. Food coloring too. If I eat highly colored cake frosting flowers, I am really sick and shaking...maybe the sugar but I noticed that deeply dyed foods are death for me. I think they are just bad in general for all of us. Alcohol too.
Of course now that I am pregnant, I don't have wine with dinner, but I think alcohol makes it worse too. If I am shaking sometimes I get up and have something to eat, like another person said. That seems to help if the Calcium tablet couldn't override whatever stress I put myself thru that day. Good luck to everyone and God bless you, it is So tough. Feel free to email me anytime. Especially at 3:00 am on a stressful day!!!!!!!
Peace and sleep to all,
Annette B.
P.S. Is there a way to enlighten these doctors that are damaging people's livers and refusing to try something as simple as Calcium for their patients? I would love to help.
Hello, I am a 61 year old male. I have heart disease. I had had a serious heart attack and had quadruple bypass. That part of me is ok. I also had Parkinson disease. Diagnosed 5 years ago. It is serious enough that I had to retire from work. I am heavy on medication. 11 years ago I had a heart attack while vacationing in Washington DC. No previous history of health problems. I was put on medicine (a lot) then 5 years ago I was diagnosed with Parkinson......more medication. 1 1/2 years ago I had to have bypass surgery and got rid of all my heart medicine.
I have had RLS since my Parkinson started so I thought it was part of my Parkinson. I only get exhaustion sleep. It was very bad , when I told the doctor something had to be done because I almost fell down a flight of stairs. The Dr started me on Neurotin 300 mg 3 times a day. He increased it to 400 mg last visit. I never thought of it being a sleep disorder because it affects me all the time. My lower legs below the knees are like pin and needles. I gave up driving the car because of the lack of feelings in the leg.
I am having terrible trouble with my feet. Part of it is because of my
shuffling. . but
circulation is getting poor in the legs. I am contemplating about going to a vascular
specialist. My podiatrist suggests this. Could RLS be a vascular problem?
I knew for several years that I have RLS, but did not know until now that any help is available.
Someone told me to drink tonic water for relief, as it is a natural source of quinine. I am just wondering if anyone else uses this as a treatment.
Thank you,
Ramona
Subject: question on RLS and prozac
I'm curious. My wife has been diagnosed with RLS. It seems to have started only in the past few years. Less than 2 years ago I think. Also, she started on Prozac at around the same time. Could the prozac be the cause? And, is it reversible if she goes on something besides prozac if that is the cause. It was a night time problem at first and now troubles her during the day.
Thanks.
Subject: RLS/PLMS
I was diagnosed with Periodic Limb Movement, during sleep (PLMS or PLMD) about a year ago, during a sleep study. I was prescribed Sinemet CR. It worked some of the times, but then stopped working.
To Candace: Please let me know where you get ayurvedic herbs (arjun and vata chintimani). What strength tablets? Is there any mail order company, from which I can buy these products?
I have read many letters from RLS sufferers, but just one from a PLMS sufferer (Joan M. from Michigan). To answer her question, PLMS is the same as Nocturnal Myoclonus. I have no symptoms of RLS, which include restless legs, leg pains, etc. during the daytime or even on bed, while I'm awake. I didn't even know that I was jerking my legs during my sleep, until a sleep study was done. For several years, I knew I was not getting a good night's sleep. Often, I wake up with a headache in the morning. The tenseness is sometimes mild in the morning, but as the day progresses, it turns into a full-fledged headache, unless I start taking a pain killer. I have used Aspirin, Tylenol, and Ibuprofen, but I'm tired of pain killers. Who knows the long term side effects of all these drugs?
My doctor says that PLMS causes me to awaken several times during the night, without my conscious knowledge, and so my sleep is disturbed, resulting into tenseness when I wake up. I am 50 years old and I have to wake up two times or so during the night to go to the bathroom, but I have not seen my legs jerking even when I wake up for this.
There is another issue. It seems like I get too many dreams, and often they are confusing, series of unconnected scenes, and sometimes anxiety causing. I am wondering if PLMS has anything to do with this. My thought is, since my sleep is being disturbed by PLMS, I may not be getting enough stage III and IV (deep sleep stages). Instead, from light sleep (stage I and II), I maybe jumping into REM sleep. In short, PLMS upsets my whole sleep cycle and so I wake up tense, rather than relaxed. What is the experience in this area (of dreams) of other people with PLMS or RLS? Please respond.
Also I have found out that eating certain foods, esp. sour foods (e.g. lemon, citrus fruits, vinegar, etc.) causes more PLMS, as I wake up with a severer headache if I eat these foods the day before. My father was a smoker, but not an alcoholic. My mother was neither. I am wondering if alcohol or tobacco use by one or both parents may be the cause of this problem. We need research projects by medical schools about how heredity, food allergies, etc. maybe affecting PLMS and RLS. This is a good research project for graduate students in medical school.
I have read that as people age, many of them start getting symptoms of PLMS {In fifties and on). This may be a widespread epidemic in our elderly people. Many of them will never find out why they are not getting a good night's sleep, unless and until they go for a sleep study in a sleep lab; (as was the case with me).
I feel that PLMS (or PLMD) and RLS may or may not be connected. I have PLMS but no symptoms of RLS. (Just like Joan M. from Michigan) I think we PLMS sufferers should have a separate support group, maybe under the RLS support group or maybe a separate one.
RLS Support Group,
I have the symptoms of RLS. My calves twitch constantly and I experience occasional episodes where I can't sit or lie still. Sometimes this leads to insomnia. My girlfriend complains about the fidgeting. My father has RLS symptoms too. He taps his feet constantly and gets up in the middle of the night to do deep-knee bends.
Yoga-style stretching has been the most effective form of treatment for me. When I have an episode, I'll get up from bed and stretch. Some of the yoga poses are strenuous. The physical exertion addresses the restlessness, while the stretching and mental aspects of yoga seem to quiet my nervous system (and mind). Sometimes, if I don't feel like doing the yoga, I'll do exercises like deep-knee bends. I've been jogging in the middle of the night on a couple of occasions.
I remember one RLS episode very clearly. I was trying to fall asleep, was extremely restless, but *forced* myself to be still. Interestingly enough, after about 15 minutes, my body went into a state of deep relaxation. I fell asleep shortly thereafter. My theory is that my body generated endorphins to deal with the distress (like a runner's high).
I am wondering if others who have RLS have tried yoga? My experiences have led me to conclude that RLS is some form of nervous system/mental imbalance. Yoga seems to have helped. I look forward to your response.
Sincerely,
Roger A
La Jolla, CA
I am responding to the person that asked about where to get the ayruvedic herbs. I get the arjun in an herb store in Rochester and as for the pills, I don't think you can order them without giving the name of a referring healer or chiropractor or whatever. However, the address is: Kanak-P.O. Box 13653 Albuquerque,NM 87192-3653 . I don't think that you can call them. Hope this proves helpful.
Candace
Started several years ago for me, I am now 36, female, have 1 child, work full time (registered nurse); I know my father had it. My husband says I always did jerk in my sleep, but I get the sensation in either one leg or the other, usually when I'm trying to go to sleep, although it has hit me during a movie at the theater or on a flight (yikes-no place to pace). I have found nothing that really helps but I haven't known that other people suffer from this. It helps to know I'm not crazy. I watch TV until I go to sleep to create a diversion and it seems to help. Thanks for being on the internet!!!
Subject: Another one of the night people
Date: Tue, 10 Dec 1996 00:39:24 -0500
RLS has been with me for as long as I can remember. For years it was an on-again off-again nuisance but for the last thirty years or so it has gotten progressively worse. Until about four years ago whenever I mentioned my malady to a physician I would get the blank stare and an abrupt change of subject. Then one day I was having a session with my Psych counselor and happened to mention it to him. By then I was nearly crazy with that awful exquisite nerve nightmarish feeling which came on in either leg and even in my arms causing me to want to smash my head against the wall, march endlessly around the house, leap from a moving car and scream, among other things.
My counselor listened quietly to my story and then excused himself saying he'd be back in a minute. He returned with a Psychiatrist and the two of them told me that they had been discussing a similar problem with another patient. He prescribed Klonopin and told me to see if that would help. Well, it did for a while but gradually I had to take larger doses of it to be effective. Finally I gave it up as I was constantly sleepy and dopey all day. It's odd but even if I'm exhausted and my body is hollering for rest the RLS is relentless and I can't lay down. I have to stagger around the house moaning helplessly.
Since the Klonopin I've been on Sinemet but as soon as a dose wore off the RLS would return worse than before ending with me having to take it every three hours around the clock. I was like a zombie. Then we tried Parlodel. The first dose made me so sick I cut the dosage to a quarter. I still suffered constant nausea. After a month I stopped taking the Parlodel. By this time I was under the care of the Sleep Disorder Clinic at Dartmouth. I was then given Darvon, one at bedtime. Completely ineffective.
For a few months I took Percocet at bedtime and it was a bit effective. I took nothing during the day preferring to move about doing chores etc to stave off the symptoms. I could watch a little TV but mostly on my feet rocking back and forth. Percocet contains codeine which can be addictive so I kept looking for something else to try. In the last RLS Foundation Newsletter there was a letter from someone who said she was taking Ultram 50 mg at supper and 50 mg at bedtime and it seemed to be helping her symptoms.
I've started on the Ultram and find it's better for me if I take 100 mg at bedtime instead of two separate doses. Other things I do to help is making a cup of Cambric tea at night (1/2 hot water 1/2 milk and honey to taste). It's very soothing and sits well on the stomach. I have a few graham crackers with it. Sometimes that's all I need to get to sleep. Other times I knit or sew (oddly neither bothers the RLS). I've even cleaned the bathroom, washed floors, baked and tidied up around. When all else fails I get under a hot shower (better than soaking in a hot tub). I live alone so I'm not bothering anyone except perhaps my Corgi who sometimes sighs when I've climbed out of bed for the umpteenth time. I haven't taken the Ultram long enough to know if it is going to be a blessing or another curse. So far it seems to be working.
Jeanne R>
Comrades,
I've had RLS for about 10 years. I'm 40 now and hope it doesn't keep getting worse with age as I've read in some letters. My symptoms are confined to just my calves and you all know what they are- no need to describe.
I've tried many things with little luck so far including:
Quinine
Klonopin
Stretching
Messaging
Melatonin
Hot bath or spa
Leg exercises and jogging
The one thing I've had some luck with hasn't shown up anywhere to my surprise. I bought a couple of 6" wide ACE bandages and wrap my calves moderately tight at night. This almost completely eliminates the creepy electrical mini-twitches, but I still have to roll my feet around stretching my calves in order to get to sleep.
The worst impact of this is on my marriage. Although I can usually get to sleep okay (with the bandages and leg/feet rolling), my wife can't stand it. We spend most nights in separate beds. Occasionally I wake up around 4:00 AM and the sensation is gone and I can sneak back into bed with her. She is very unhappy as she feels lonely and abandoned. At least we now know I'm not a lunatic (well because of this anyway). The Net is pretty cool.
I'd like to try different drugs, but I'm reluctant to try them because some seem to help people, others make the symptoms even worse. The only drug I've read about so far that seems to not have a sling shot effect is methadone. Any ideas on how bad this would be to take for the next 50 years or so?
Regards,
GM
PS- My mom's had this as long as I can remember.
I am interested in joining a support group and getting more information about RLS, but I'm sorry to say that I live in Maryland near Baltimore, so the California support group won't work for me. I was so excited to find the RLS Web Site that I jumped the gun and wrote the letter before I realized that there were groups in other geographic areas. I thought I could at least participate long distance through the magic of Email and get more information etc.
This RLS thing has been a part of my life for a long time. The first time I actually remember having my legs go crazy was when I was on a date in a movie theater when I was 17. I will be 45 in a week. It's probable that I had it before that time, but just don't remember it. My RLS has become progressively worse through the years. I can't sit comfortably through any performance that begins after 6 or 7 p.m. My father, my brother, my brother's son and my son and daughter also suffer with this malady. I also suffer with PLMD. My husband says he thinks I run several miles in bed each night. No wonder I'm so tired during the day and have so much trouble getting out of bed in the morning.
The first time I had a name to put to this disorder, was a few years back when I read an article about sleep disorders in Readers Digest magazine. It was a comfort to read about it although there was no definitive treatment mentioned in the article as I remember it.
We (the family and friends) joke about it, but it isn't really funny is it? I try to describe the feelings to others who are not afflicted and then read about it being an indescribable feeling, which it is.
I've been working on getting up the nerve to go to a doctor for this disorder now that I have more information about it. I've searched the net in the past, but didn't ask the right questions to find your support group and Web page. I seriously thought there was no treatment and, consequently never mentioned it to my regular physician. I found an article in HomePC magazine that listed 300 great Web Sites. One of them was a Sleep Disorders Web page. The links in there led me to you.
Are you being treated with medicines? Do they affect your daytime performance/ability to drive a car etc? Most importantly, do the medications really help the RLS. Would I have to spend the night in a sleep clinic? Does that feel weird? One of the articles I read on line mentioned a doctor at Johns Hopkins (which is close to my home) Richard P. Allen, Ph.D., so maybe I'll break down after the holidays and make an appointment. I would love to be rid of this or at least control it.
Thanks again for your response. Keep in touch.
Donna
Click to go to the RLS Homepage, RLS Treatment Page
Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section
http://www.rlshelp.org/rlscompl.htm
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