Patient Comments: Restless Leg Syndrome - Experience


Please describe your experience with restless leg syndrome. Submit Your Comment

Comment from: Ana, 19-24 Female (Patient) Published: April 27

My restless leg syndrome (RLS) isn't painful. It's more of an unbearable sense of impending doom if I do not move my legs, accompanied by a feeling like thousands of hot and cold ants are racing through my body. The feeling of contrast fluid when I had to get a scan of my intestines actually was kind of similar (other than the needle, that is).

Comment from: Andy, 55-64 Male (Patient) Published: December 03

I have had restless leg syndrome (RLS) on and off since my 40s. My feet are what is affected. When it occurs it's always in bed, and it can take an hour to wear off. It's as if some weird electric charge, or some chemical is building up in my feet over a period of tens of seconds. It isn't painful, but as the 'charge' ramps up it does become unbearable. Kicking my feet together hard always gets rid of this feeling immediately, but then the weird charge/chemical starts to build up again. A hot water foot bath helps.

Comment from: Maree , 75 or over Female (Patient) Published: December 23

I have burning sensation in both legs from the knees down to ankles. I take a mild dose of Lyrica at night which usually helps with my restless leg syndrome but not always. Sometimes I resort to a sleeping tablet to get some sleep.

Comment from: George , 55-64 Male (Caregiver) Published: December 10

My symptoms of restless leg syndrome are consistent with the article. The burning pain affects only my left leg, only at night when I'm in bed, and only relieved by moving the leg. Very uncomfortable. I've no problem with jogging, running, etc. I'm a type 2 diabetic. I intend to cut down on caffeine and do an iron measurement test. My arteries are fine with no occlusion or stenosis.

Comment from: Sugarmook, 45-54 Female (Patient) Published: November 05

My legs are in pain as soon as I lie down. I have severe pain with restless leg syndrome.

Comment from: Darren 65, 45-54 Male (Patient) Published: April 18

With restless leg syndrome I have pain in my lower leg usually in the side of the calf and side of the knee while resting, pain deep within the buttocks, and cramps.

Comment from: Celiac, 55-64 Female (Patient) Published: April 10

Get checked for celiac disease. It causes absorption problems. I need shots to help with my restless legs syndrome, for the folic acid, magnesium, and B-12 I don't absorb properly. Legs feel better for a month after shots.

Comment from: Flying Nun, 75 or over Female (Patient) Published: August 24

Depression and anxiety need to be treated separately from restless leg syndrome (RLS). Lack of sleep can worsen these symptoms, RLS medicines do not respond in the same way to everyone. I tried so many, I now am being treated with iron supplementation with much success. My blood counts are monitored monthly and the iron intake adjusted accordingly. It is so great to sleep.

Comment from: Funky D, 45-54 Female (Patient) Published: August 21

As soon as I lie down in the bed, my right leg hurts from hip to ankle from restless leg syndrome. I cannot lie on it for longer than 5 minutes and that is pushing it. It’s just a constant (almost throbbing) pain.

Comment from: Flying Nun 2018, 75 or over Female (Patient) Published: August 01

I am taking iron supplement even though my values are normal. Some individuals with restless leg syndrome (RLS) require more iron. I have had RLS since childhood and am now almost 100 percent symptom free. The usual medicines worked for a while then stopped. My iron levels need to be monitored when taking iron supplementation with regular blood tests.

Comment from: Snookums, 75 or over Female (Patient) Published: July 25

I became a compulsive gambler while taking Mirapex. I gambled all my savings, sold my jewelry, stole, lied, and my credit score went from excellent to completely nil. Gamblers Anonymous saved my life. Over the years I was treated with the usual medications with no lasting relief. After finding a neurologist who treats restless leg syndrome (RLS) I am now almost 100 percent symptom free. I was experiencing symptoms nearly 24 hours a day. I found help through RLS Foundation website.


What kind of disorder is restless leg syndrome (RLS)? See Answer
Comment from: RobertF, 55-64 Male (Patient) Published: July 17

I used to have leg cramps from restless leg syndrome, then discovered it was happening only when I took Tylenol PM (acetaminophen) to fall asleep. I have not touched acetaminophen since then and the leg cramps are gone.

Comment from: Steve, 35-44 Male (Patient) Published: June 26

I’m 44 and have had restless leg syndrome for most of my life. It seems to have gotten worse over the last two years. I’ve been on Requip for about 6 months and it worked when I started but it’s not working anymore. I only have it when I try to sleep. No symptoms at all during the day unless I take a nap. It’s very frustrating. I will fall asleep with no symptoms, then wake back up within 30 minutes with my legs on fire. I’m healthy, active, workout, take supplements such as magnesium and fish oil, cut out sodas, and drink lots of water. I’m tired! Oh and forget about taking anything that says “PM” for help with sleeping. That really triggers it. NyQuil is the worst. I’m just worried if there is an underlying condition I’m dealing with.

Comment from: Bobby E, 55-64 Male (Patient) Published: June 11

I worked a gambling establishment for over 20 years, invested my money wisely and became a millionaire. Never gambled once during that time. Then I got on Requip for my restless leg syndrome (RLS) and gambled everything away. It's a side effect of the medicine that only 10 percent of the people taking it get. I have tried everything under the sun but this Requip is the only thing that works for me so I can sleep at night. My RLS is so bad it feels like my legs are in an electric chair all night if I don't take it. But my problem is it makes me a degenerate gambler. I love the slots and I know they are the worst odds at winning. So my dilemma is to kill myself or continue to live in my car and be a degenerate gambler. I am at my wits’ end in don't want to do something drastic but I can't keep on living this way.

Comment from: Maegen, 25-34 Female (Patient) Published: June 07

Lying down and extending my legs in the air helps with my restless leg syndrome. I extend them fully straight up. And I point and flex my feet as far as they will go. This relieves me of the tightness in my calf muscles. I also punch my legs in certain areas. It helps my legs relax and it relieves the tension and pain.

Comment from: Ben D, 65-74 Male (Patient) Published: April 20

My restless leg syndrome (RLS) started with my first knee replacement. The opioids the orthopedist prescribed for the knee rehabilitation controlled it, but he and I didn't want me on them indefinitely. The way it affected me is that I had an uncontrollable urge to move my post-operative leg every 10 to 12 seconds, so I could not sleep. My main doctor told me it is due to decreasing levels of dopamine in my brain, and prescribed pramipexole (Mirapex) to be taken in the early evening. That worked well - it is a dopamine agonist. Problem is that it takes about 2.5 hours to take effect, so if you forget to take it until later and the RLS comes back, it takes that long to stop. Walking, or a stationary bike for 20 minutes will stop it for a while. The doctor proscribed gabapentin to try, but that doesn't stop it once it starts. I read that dopamine production drops by 10 percent every 10 years of life, so it won't probably get better.

Comment from: gill, 65-74 Female (Patient) Published: April 10

I am 61 and suffer from severe restless leg syndrome. The sensation is an unbearable build-up of tension in the muscles around the knee. Keeping the leg elevated relieves it but it immediately starts building up again. It is caused by a lack of dopamine in the brain. I am on pramipexole and gabapentin but every week have to take an extra pramipexole which I shouldn’t really do. When I do this, for a couple of days I feel relaxed and sleepy, until the tension starts building up again.

Comment from: The Hugs Lady, 65-74 Female (Patient) Published: January 30

I've had restless leg syndrome (RLS) since I was a child. As someone else mentioned, my mother called it 'growing pains' and would tie a bandana around my calves to help me get some relief. My dad suffered from it to but not sure how young his started. I was glad to read some other things I can try like Vicks on my feet and slow release B-12. At one time, I thought it was caffeine that caused mine. For a time, I thought it was lack of iron. I've tried so many things but the only thing that seems to work for me is Requip. Even then, I split the pills because I don't like taking any type of drugs. Some of the drugs mentioned are scary like gabapentin so hopefully, a natural product is discovered soon which will give us all some relief. Keep the faith!

Comment from: ChristyV, 55-64 Female (Patient) Published: April 24

I was having restless leg syndrome in my right leg, enough to keep me up most of the night. I spoke with my doctor. She knows medicines are always my last resort. I am awful about drinking water. She told me to drink lots and lots of water, especially Seltzer water. I did some research and decided to add magnesium with chelated zinc. I take three 400 mg tablets a day. I couldn't believe that my restless leg stopped. But I'm a lazy vitamin taker. I went two days not taking vitamins and my restless leg came back one night. I got up and took the magnesium tablets and within 1/2 an hour it quit.


Restless Legs Syndrome: 16 Natural Remedies and Treatment for RLS See Slideshow
Comment from: Elvis, 65-74 Female (Patient) Published: March 16

It's almost 5 am and I’ve been up since 3 am. I rarely sleep more than one or two hours a night and wake crying out with pain in my legs and hideous burning in my feet. My mother also had restless leg syndrome. I fall asleep with an icepack on my feet. Medical science may say this condition is not life-threatening but how long can a person go on with such poor sleep!

Comment from: brandygirl, 65-74 Female (Patient) Published: February 03

This works for me every time. I keep a couple of bottles of water in the freezer. When I start to have symptoms of restless leg syndrome I take a bottle out and rub it up and down my calves on both sides, also the bottom of my feet, for about five minutes total. It may not feel like at that time that it has done any good, but it always has, and I can fall asleep then.

Comment from: loisjones44, 35-44 Female (Patient) Published: May 11

What works for me for restless leg syndrome (RLS) is, I deliberately create an itch/tickly feeling somewhere nearby, e.g. further up the thigh, by brushing my fingers against it lightly. (I immediately scratch this itch, so you're not just moving the problem to a different part of the body). I find this immediately relieves the RLS feeling further down the leg. Sometimes the muscles of my thigh continue to feel a bit tight, but repeating the action above in a couple of different areas relieves that.

Comment from: K.P., 65-74 Female (Patient) Published: April 29

I find when I drink a lot of water my restless leg syndrome (RLS) wakes me up about 4 to 6 times a night. If my water intake is minimal I might wake up with RLS once or twice. Maybe it is just me, but it is worth paying attention to.

Comment from: Jean, 45-54 Male (Patient) Published: February 09

I have had restless legs and have tried many things until I found an old medication which is made of plant extract which was originally developed by a priest about 200 years ago. It's called 'Jouvence de l'Abbe Soury'. It is taken by diluting two coffee spoons of it in a little water. I have taken it so far at the start of my restless legs symptoms and managed to have a good night’s sleep. I do not know it will work for everybody but it's worth a try. Make a search, several on line shops sell it.

Comment from: countryboy, 55-64 Male (Patient) Published: December 06

I have had restless leg syndrome (RLS) for about 30 years and it was getting worse. Medication would sometimes help, but not always. I tried everything without any luck. One day when my RLS was really hurting me, I thought of something that I had not tried for my pain. I filled a 5 gallon bucket with water. Then I put ice in the bucket. I soaked my legs as long as I could, doing that several times. It relieved my RLS symptoms for that night. I hope that it might help you as well.

Comment from: gdedwards11, 45-54 Male (Patient) Published: October 29

I think I know one reason for restless leg syndrome (RLS); what you eat! If I eat something that has caffeine, I can usually get away with eating (or drinking) later in the day. If I eat something heavy with sugar, like ice cream, I have to eat it earlier in the day or I get restless leg syndrome. The best cure, it doesn't always work, but it might if I drank enough water. Lots of water seems to help. If I'm having a bad night with RLS, I can get up and drink about a liter of water and the RLS goes away and I can usually sleep. Yes, movement helps. But I am convinced it has everything to do with what a person eats before bed. I'm guessing that people with RLS during the day would be able to stop the symptoms by drinking lots of water.

Comment from: Linda, 65-74 Female (Patient) Published: July 21

My restless leg syndrome (RLS) is horrible. I have had it since 1984 approximately. I take Requip but it doesn't always help. It may act up anytime of the day or night. If I get up in the middle of the night I am unable to go back to sleep due to RLS. My legs hurt and jump so much I don't know how much more I can stand. There must be help somewhere.

Comment from: Mary, 55-64 Female (Patient) Published: June 16

My first episode of restless leg syndrome (RLS) was at age 24 when pregnant. I am now 64 and RLS has increased. It can begin during the day and worsen when in bed, wanting to sleep. I also have atrial fibrillation and left heart failure. No one in my maternal family experienced RLS. I recently met several paternal cousins and asked them if they suffer with RLS. Many do. One does not fly because it is so bad with her. She has been helped with costly acupuncture. Both male and female cousins suffer as well as their children. Two of my four daughters also suffer with RLS.

Comment from: val4nier, 55-64 Female (Patient) Published: April 21

My legs feel as though an electric shock is going through them. When I fall asleep, day or night, I wake up every few minutes because my legs jerk. I have great fatigue and am drowsy because I do not sleep well because of the restless leg syndrome. Even sleeping upright in a chair does not help. Whether it is related or not, when I lie down I have numbness in some of my toes. My movements are often stiff. My muscles do not recover well from exercise.

Comment from: pbfudge, 75 or over Female (Patient) Published: December 29

I'm 83 and have had restless leg syndrome (RLS) for about five years. It really robs me of sleep and I never get more than four or five hours a night, and I'm up and down all night. I currently use pramipexole and subsidize it with an oxycodone tablet or half of one about every day. I can't sit long as RLS always returns, so whether I like it or not, I have to stay in the 'up' position most of the time. I wish there was some kind of a contraption that would allow me to stand up in it and go to sleep, supporting me in the 'up' position! One thing I have found that also helps me is to take an ice pack and keep rubbing it up and down the leg that's bothering me, for about ten minutes. Then the RLS subsides. Ice works for me!

Comment from: Booboo, 55-64 Female (Patient) Published: September 05

I cannot stop moving my legs. I take clonazepam at night. Sometimes it helps, sometimes not. My restless leg syndrome feels like worms wiggling inside my calves. Massage does not help, just in the short term.

Comment from: twitchy, 65-74 Female (Patient) Published: August 22

My restless leg syndrome (RLS) feels like spiders walking on me or a hair being dragged across my legs. I have had RLS for all of my adult years. The past few years I have taken gabapentin and it has helped significantly. I need something else and my doctor recently prescribed Requip. During the first few weeks it worked and then I must have had a reaction to it and had the most severe diarrhea ever imaginable for seven days. This happens to be a side effect of the drug in about 3% of the people. Now I am hoping to find a different solution. Good Luck.

Comment from: frustrated in Texas, 35-44 Female (Patient) Published: July 14

My restless leg syndrome (RLS) came on when I was pregnant with my second child. It has definitely gotten worse as time goes on, and now affects my arms as well. I can't take any over the counter medications that cause drowsiness (such as Benadryl), it just makes it worse. The only thing that seems to help is the hydrocodone I am on, for the fusions in my foot, and Ambien CR. It acts up during the day now, but really rears its head at night. It is frustrating because I can't exercise due to my severe arthritis. The best way I can describe it is that my muscles feel like they are being twisted... until finally I can't stand it anymore. Then I kick or punch to relieve the sensation for a few moments before it builds back up. I stay in constant motion when it is at its worst. This is a horrible disease.

Comment from: raj, 35-44 Male (Patient) Published: June 04

I am 44 years old and fighting with this restless leg syndrome for last four years. It starts at night in my feet as soon as I go to bed and gradually increases. Even though I feel sleepy I cannot sleep after lying on bed and closing the eyes. I do not take any medicines. If I cannot sleep I get up and do stretching, massaging, walking for some time and sleep again. When I do regular exercise it helps me to sleep immediately on bed before it gets aggravated.

Comment from: marbles, 55-64 Male (Patient) Published: March 18

Up until age 60 I had very good health, or so I thought. Then heart failure, COPD, restless leg syndrome (RLS), sleep apnea... beginning to sound like a Studebaker way past its prime. Never noticed the RLS until after my open-heart surgery to replace aortic valve and my convalescing. With a new awareness of my body’s failings, I realized I had been having minor RLS symptoms for years (constant low-grade tingling), passing it off as fatigue. Now, seemingly, a switch had been levered which brought this affliction to my daily life. Still working on a fix that works for me.

Comment from: Restless in CA, 55-64 (Patient) Published: March 07

I have had RLS (restless leg syndrome) for about 20 years and it does seem to be getting worse. I am up to 2 pills a night. During the last decade I have notice that uric acid might have something to do with it. After about 2 hours of my legs spasming out, I go and void all the urine out of my system. I have not read any correlation about RLS and uric acid but I believe there is something to it. So, the next time (which will be tonight for many of you), sit on the throne, relax, read and void every drop. I hope this helps!

Comment from: Recycledritz, 65-74 Female (Patient) Published: February 10

I have fibromyalgia, chronic fatigue, reflex sympathetic dystrophy, migraines, restless leg syndrome and a very significant back pain problem. Of all these, RLS is by far the worst thing I deal with at night; it is pure torture. I was on Mirapex for 6 to 7 years and it worked great, then suddenly just quit working. I was prescribed Requip that worked for a few weeks then stopped working. I was then prescribed Neupro patches and I would have just as much results with a Band-Aid. I started taking supplements of magnesium, potassium, vitamin D and a very low dose of iron (on my own after research) and saw some relief for a short while. I continue with them even though I get no RLS benefit anymore. I really wish science would put more effort into finding cause and cure for this. One might say "but it's not life threatening"; unfortunately, that's true.

Comment from: JJG, 65-74 Female (Patient) Published: February 07

I have had RLS (restless leg syndrome) for as far back as I can remember. All four of my children have it too. When they were small we referred to it as "crawly legs". It wasn't until about ten years ago that I discovered there was treatment available. I take pramipexole and it has made a huge difference. Prior to treatment I had trouble sitting still long enough to watch a movie. Road trips were miserable, I would literally put my feet on the dashboard to try and get relief (fortunately I'm very limber!) I constantly had to keep my legs moving! I truly empathize with others dealing with this problem and encourage you to seek treatment. Also, exercise, especially walking, helps a lot.

Comment from: Lili, 35-44 Female (Patient) Published: February 06

The first time I experienced RLS (restless leg syndrome) was in an airplane at the age of 18 years. After that, I experienced RLS only while traveling in an airplane. I thought it was associated to the high pressure. At the age of 29 years, I had my 1st pregnancy and since then I constantly suffered RLS at night, regardless of how tired I am. I exercise regularly and I consider myself a healthy person. I didn't want to take any medications due to secondary effects and dependency. However what I found useful and helps me to get back to bed and sleep is several repetitions of exercises that get your legs tired, for example, I would make up to 80 repeats of lifting myself up (stepping only with my toes/heels in the air) and down (heels touch the ground). Once I feel the burn on my calves then I know my legs are tired and the sensation goes away. I also make squats or just lift one of my knee up to me waistline and down to touch the ground with my foot, also up to 80 repeats or until my legs start shaking. That has worked for me so far.

Comment from: sickandtired, 65-74 Male (Patient) Published: January 29

I am a retired male 69 years old and have had this RLS (restless leg syndrome) problem for 10 years. But for 9 and 1/2 years I was misdiagnosed as having severe anxiety. I am a former drug abuser/addict. The RLS symptoms are very much like withdrawal from opiates. The doctors thought that I was seeing didn't see the symptoms in the daytime and thought that the nighttime symptoms was anxiety caused from drug abuse. Amazingly certain antidepressants worked, but only temporarily. Depakote, trazodone, Paxil. Today I'm on a Neupro transdermal patch. It stops symptoms most of the time, but I don't get much sleep. Sleep medicines like Restoril, Ambien, trazodone etc. have no effect. They slow me down but that's all. I hate it when somebody says "nobody ever died from no sleep" I do know if I take hydrocodone with this medicine the symptoms are relieved but I don't need another nightmare.

Comment from: Mommasluggo, 35-44 Female (Patient) Published: December 30

I have had RLS (restless leg syndrome) since I was little. I always had to shake my leg. For the longest time it was only in my right leg, but about 3 years ago it was in both legs, the urge to constantly stretch them or shake them. Then my feet would get hot. Two years ago it started in my arms, luckily that only happens occasionally. But my legs are constant and now they will jerk involuntarily. I am on 3 mg Requip, I try to only take half because they make me nauseous in the morning. But if not for the Requip I would probably go insane because I absolutely cannot sleep without it. It's a lifesaver.

Comment from: Mrs d, 45-54 Female (Patient) Published: June 15

I am having a restless leg syndrome problem with my right leg from my hip down to my knee, and it only happens when I am getting into bed for my night’s rest. The pain is unbearable.

Comment from: [email protected], 75 or over Female (Patient) Published: June 21

I have restless leg syndrome (RLS), diabetes and sleep apnea. For 30 years I have been on clonazepam 0.5 mg 2 tablets every night. My doctor wants me to stop. She had me take another medicine starting with a G, I don't remember the name. It did not work and I was up all night, I went back on clonazepam for a few months and now no more prescription drugs.

Comment from: JOHNC108, 65-74 Male (Patient) Published: October 27

I have restless leg syndrome, sleep apnea, and dermatomyositis, all unknown cure and cause. It's hard to say which the worst is. The VA (Veterans Affairs) won't connect anything to Agent Orange. I'm on mycophenolate, folic acid, prednisone, methotrexate, metoprolol, Mirapex, magnesium, potassium, aspirin, fish oil, and multivitamin, all doctor prescribed. Rest is hard to get. If the VA would connect anything to Agent Orange it sure would cut my expenses.

Comment from: shirley, 65-74 Female (Patient) Published: May 11

I suffered with restless leg syndrome (RLS) for years. I tried everything and so far the roll-on called 'Stop the pain' works but I must put it on only when the jumping starts otherwise it doesn't work if I put it on before. I fall asleep with cold feet. About an hour later my feet are burning up then it starts. Fight it for a while before sitting up and then rolling my feet. Within a minute or so I calm down and sleep follows.

Comment from: cynthiaps, 55-64 Female (Patient) Published: December 01

My restless leg syndrome gets so bad that my whole body flops about like a fish out of water. It even happens when I'm driving. I am on ropinirole 3 mg and still having problems.

Comment from: Jaya, 45-54 Female (Patient) Published: October 21

For a few years now I have been experiencing a pain in my leg at nights. It started during my pregnancy in my 20s as a muscle pull; the muscle of my right calf used to seem to just ball up and ache terribly. Massaging used to help it go away after a few minutes. Later this symptom disappeared. Instead now I wake up around 2 to 3 am with a sudden severe pain in my leg; it feels as though my leg bone is in the grip of a vise. I have to jump up and start walking around. The pain usually goes away after 10 to 15 minutes. I have never felt the creepy crawly symptoms of restless leg syndrome (RLS) being described here, so I wonder if my condition is that of RLS or something else. But more importantly, I have discovered that covering myself, especially chest downwards warmly with a blanket before going to sleep helps me sleep through the night. I have not had these symptoms ever since I regularly started keeping myself warm before dropping off to sleep. No idea whether this really helps, but I don’t want to risk finding out either. Another thing is that this is always in my right leg. I had a back problem about four years ago, perhaps all these are related.

Comment from: ROSALEEN, 45-54 Female (Patient) Published: July 23

I have suffered with restless leg syndrome (RLS) for a number of years and have been given ropinirole which is starting to wane in effect. Since a while back I’ve been getting the same feelings spreading up my body to the point I have to keep taking deep breaths. So now it’s not just my legs but my abominable and chest too. I feel I have to add that I do suffer from anxiety and depression and was wondering if the anxiety was just causing this feeling spreading upwards. I haven’t had a decent night’s sleep in years.

Comment from: Julieg48, 45-54 Female (Patient) Published: May 02

I have suffered with restless leg syndrome (RLS) for many years. I was told it was stress and lack of sleep. People thought it funny to see my legs always "jumpy ". I was given a prescription which barely touched it. Finally someone took it seriously and I am now on road to a better way of living. It got so bad I couldn't sit at work or even drive my car. I so appreciate all the related articles... good to know I am not alone.

Comment from: sandchell, 45-54 Female (Patient) Published: January 13

After suffering for years with RLS (restless leg syndrome), only because I had hurt my back and was prescribed an opiate did I find any relief. And because opiates are expensive I chose methadone. I have a severe case of RLS and was shocked to find that I now have RLS affecting the entire right side of my body.

Comment from: Lynn, 45-54 Female (Patient) Published: October 18

I'm 52,and have had restless leg syndrome (RLS) for approximately 10 years. My RLS feels like my legs want to dance, but my mind just wants to sleep. It kind of feels like I have a tens machine on my legs sending out electrical impulses constantly. I have been using Sinemet which as a rule works really great. However, I recently had a shoulder replacement, and a fusion in my foot, so a lot of time resting making it 70% worse than usual. Needless to say I'm looking forward to getting full mobility back asap!

Published: June 23

I have always heard of RLS in terms of jumpy, jerky legs. In my experience, I would describe it as if my veins/nerves were being filled with a chemical, or an extreme caffeine high. I get momentary relief by squeezing my muscles, but it comes back immediately. The best relief comes from exercise. I get up and do 50 jumping jacks. The sensation comes while in bed or sitting in a chair and affects my legs and arms. I regularly exercise, weigh 150 and consume almost no caffeine. It began last year or so and seems to be getting worse. I am 63.

Published: June 23

Ever since I was a little girl, I had RLS. When I sleep at night, I would wake up in the middle of the night feeling very uncomfortable around my calf area. I would have to get up and move around, or do some kinds of leg exercise to relief the feeling around my leg area. If I don't move around, the feeling gets worse and extends to my thighs and almost feels like soreness. For some reasons, RLS only occur to me when the weather is hot. It happened more often when I was young and now it occurs around twice a month.

Published: June 23

RLS is the bane of my life. It starts off with a pricking sensation like pins and needles (but in slow motion) in my lower legs, and from then on, whatever I do, my legs start kicking out and twitching – about once every three seconds or so. This can go on for several hours resulting in continued loss of sleep. When things get bad, I also end up taking some sort of pain relief just to get a few hours respite and fall asleep. It's weird that if I want to 'catch up' with some sleep during the day, my legs stay in one place while I doze yet at night it's completely opposite. I have found that raising the end of the bed substantially seems to help.

Published: June 23

I have suffered with painful RLS for a few years. My symptoms are present 24 hours a day and are in my legs (upper and lower), hips, arms, neck and chin. I have been on many meds but Tramadol is the only one that if I take it 3 to 4 times a day actually provides any relief. I also get the symptoms so bad at times that I can't walk. This happens at least once a week.

Published: June 11

Excessive sleepiness to extreme sleepiness has infected me for four or so years. I have had several sleep studies diagnose apnea, narcolepsy, and finally RLS. I have started out with Requip and tried higher doses but have remained on IMG. At first I thought it was a miracle drug. I slept and felt alert and awake. Now it is, I think, making me groggy or sleepy the next day, defeating its purpose. If someone doesn't wake me and cause me to get out of bed, I will remain in bed all day. What to do, I don't know. I surely do not want to return to the state I was in before I started Requip. Also, I knew that I was jumpy at rest, jumping as if someone had stuck me with a cattle prod but otherwise I had no idea that I had some restless leg problem until a sleep study showed it. I have had my share of medical problems but this sleep disorder is the worst problem I have ever had. I’m talking about cervical osteotomies, halos and body braces, nerve damage and staff infections.

Published: June 11

It feels like someone is running their finger up the sole of my foot (I'm quite ticklish) and it makes my legs jump. Generally one side is stronger than the other, though both seem to be active at the same time. I can never tell when it's coming, and sometimes it only lasts a few minutes, but other times it can go the whole night. Sometimes a hot bath helps, or doing some exercises or stretches centered on my feel (calf lifts or walking on my toes). It doesn't always work though, and I've found sleep aids most definitely don't help. Just last night it kept me up all night, and I had to call in to work this morning. I was finally able to get some sleep after a cup of coffee with muscle relaxers and Ambien.

Comment from: Mohd Abdulla, 19-24 Male (Patient) Published: April 06

My problem is restless leg syndrome on the left side leg. And I cannot feel whether water is cold or hot on my leg. To move is a problem. I have carpal tunnel syndrome.

Comment from: yikes, 65-74 Female (Patient) Published: December 01

I wonder if anyone else ever gets painful stretching feeling because of restless leg syndrome, where your toes try to go backwards and up your calf. I always got those spasms when I swam as a child and older.

Comment from: piria, 45-54 Female (Patient) Published: November 30

With restless leg syndrome my feet are hot and my thighs are burning. I have been walking 6 km at night for 4 to 5 days.

Comment from: Fritz B., 65-74 Male (Patient) Published: December 24

I have had restless leg syndrome for quite a few years. I am now 72. There are no alternative or home remedies for this condition, none. In almost every case, current thinking is that insufficient quantities of iron in the brain cause this miserable disorder.

Comment from: les, 19-24 Female (Patient) Published: August 21

I have restless leg syndrome. It’s like your legs are so tired and yet you can’t sleep! You wish that when you close your eyes your head won’t think of it! It is really annoying.

Comment from: sk, 45-54 Male (Patient) Published: June 24

I am suffering from restless leg syndrome for the last two years. I tried many medications finally ended up with Bilovas tablet. It is an herbal extract from some Chinese plant.

Comment from: Dede, 55-64 Female (Caregiver) Published: April 11

I am a nurse and I experience restless leg syndrome from time to time. I could swear that the incidence and severity of symptoms was increased by taking glucosamine for my joints.

Comment from: papajon61, 55-64 Male (Patient) Published: November 06

My problem is I have it day and night. I really don't know what to do.

Comment from: Patsy, 75 or over Female (Patient) Published: October 18

I have had restless leg syndrome (RLS) for years, my doctor put on a few different medications, I had a sleep study, and I was sent home one morning about 3 a.m., I couldn't get to sleep. I had another study; I am now on gabapentin and take 5 pills day. Some times I still have RLS, I take a shower, walk through the house.

Comment from: dee, 75 or over Female (Patient) Published: August 20

I take Gabapentin and Requip.

Comment from: Scott, 55-64 Male (Patient) Published: May 02

Three years after being diagnosed with diabetes, I experienced symptoms of RLS. I thought I was going crazy. It was really bad, day and night. First, I was prescribed Neurontin, which did nothing. I became suicidal. After trying everything prescribed, I started drinking myself to sleep. Finally I read that opiates work for some people. My doctor prescribed Oxycontin and it worked. After four months, he said he could no longer prescribe it. I have been on methadone for seven years and have not lost a night’s sleep since. I know it was a drastic measure and decision, but it was that or death. Now I want to try Requip, but am afraid it will not do the job as well.

Comment from: Helen, 55-64 Female (Patient) Published: April 22

I get restless legs whenever I relax. I have had it while getting my hair cut, getting a pedicure, and a massage. Also, while driving home from the grocery store, while at the movies, and at church. I have worn a hole in my sheets. I had it as a kid too. If I miss my meds, it is an hour and sometimes longer before I can get rid of it. It is a miserable condition.

Comment from: Subgma, 55-64 Female (Patient) Published: April 05

I am in my early 60s and have severe restless leg syndrome (RLS). I’ve had fibromyalgia for years and don't really know if this is a symptom of fibromyalgia or actually RLS. I have it mainly during the daytime. I have so much pain in my legs and toes that I don't know what to do with myself. I’m on codeine contin for fibro, but thoroughly dislike the meds – they give me hot sweats so bad. I’m also taking extra-strength muscle relaxants, T3 pills, and have severe depression. I’m on a very high dose of an antidepressant.

Published: July 08

I have had RLS for many years now and have tried many different drugs to help the symptoms. I now am on 4 mg of Requip and 36 mg of Neurontin a day. I also take 5 mg of Zanax at bedtime. It seems like nothing is really working for any length of time now. I don't know where else to turn as far as what else there is out there that I haven't tried.

Published: July 08

I experience uncontrollable, extreme jerks in the legs. Usually it happens when I am driving, or at night in bed. I have pulled the car over several times it can become unsafe to drive. I hold the knee and squeeze it tight. Stretching my calves and hamstrings is the only thing that I have found that gives me relief. Sometimes I stretch for 10-20 minutes before I start feeling anything beginning to work. It comes and goes sporadically. I am 36 years old.

Published: July 02

I am a 49 year old female and have suffered with RLS for several years. I tend to describe it as you would toothache but in your legs, it starts in my lower leg and rises to my hips as it worsens. I constantly toss and turn in bed with my legs hanging out the side, or anything to give some relief, flat on my back seems the best. I also suffer with it during the day if I sit for too long. The only relief is to walk about and move. I have started on Requip and as yet have found little relief but am only just building the dose up. I hope it works.

Published: July 02

All of you get checked for Sleep Apnea. I was diagnosed with both RLS and Sleep Apnea. I hope this information helps everyone with Restless Leg Syndrome. You are at risk of dying in your sleep; if, you have sleep apnea. I stopped breathing 24 times per hour and my blood oxygen was 79 percent while sleeping at the Sleep Lab. Do your self and family a favor and get checked. I am on a CPAP machine while sleeping or napping. I was put on Oxygen until I was diagnosed. To this day, I am in disbelief. Good luck to all and I wish you all live a long and peaceful life.

Published: July 01

I'm 43 years old and have had RLS for years. I can remember as a little girl riding in the car and have what I called at the time "antsy leg". It seems to be getting worse now that I get older and especially at bedtime. It's like I'm on the verge of getting to sleep and that uncontrollable sensation to move my leg overcomes me and the only relief I have is to get up and move to the couch so that my husband can get a good night sleep. I've also had RLS attacks while driving and of course it's in my right leg so you can only imagine what that's like. I haven't wanted to take medication but it seems to be in my near future unless I find other relief.

Published: July 01

I had RLS as a teenager, or possibly even earlier (about 11), but it was intermittent and unpredictable, and I didn't know it was a recognized condition. It was gone by the time I was 20, and thankfully has not returned. I was diagnosed with MS a couple of years ago (late 30s), and according to new research, I'm at higher risk (15%) for RLS. I hope not. When I had RLS, I remember thinking it was some kind of circulation problem, something like "too much stale blood in my legs", so I tried raising my legs with pillows. It did provide a little relief, though not enough to let me sleep, and it was too awkward.

Published: June 30

My bones ache, my feet cramp. I was just diagnosed with RLS and put on potassium supplements. The supplements have helped the cramps, but not the achiness which I describe as annoying rather than painful.

Published: June 30

I have RLS. I have had it for about two years now. I take Requip for it. It is doing the job and helping me sleep however I do wake the next morning groggy and still tired. I would rather deal with being tired all day than to go back to good nights with it being that my legs felt asleep. To worse night being pins and needles. My husband has noticed a big change. He says that it was so bad for me that he could not sleep with me constantly moving and twitching in bed.

Published: June 30

I have had restless leg syndrome off and on for many years. My dad had it, my sister has it and my daughter has it. It seems to be in the family. There is no actual pain, just a creepy-crawly feeling in my legs, and sometimes in my arms that makes me want to move constantly. I sometimes get up and do squats and toe lifts along with arm exercise to help it calm down. . I do not drink caffeine or have other bad health habits. I regularly exercise (walk 2 miles a day) but find that whether I exercise or not, in the evening or early in the day, I could still be plagued with RLS that evening and late into the night. I can't seem to pin the cause on anything in particular. I would prefer not to resort to drugs, but would rather find a natural remedy. My daughter who has it is pregnant, and her doctor told her to take magnesium and she said it helped. But I've tried it and don't notice any improvement.

Published: June 30

I'm a 59 year old male who has had RLS for two years. I'm taking Requip, but have to take it at least an hour before I go to bed for it to be effective. Mostly it's a tingling in my legs that causes me to keep moving them. It started only in my calves, but now the strongest feeling is in my thighs and hips. The feeling usually comes on at night, but I can no longer take naps to make up for my lost sleep. Even with the Requip, I'm up a large part of the night, and am tired and cranky during the day.

Published: June 27

I have suffered from this condition since I was about 5. The worst is plane travel. I subconsciously told myself to feel the tingling when I knew I couldn't do anything about it but I'm convinced I always have some degree of it, I can just become more aware of it if I think about it. I also get the tingling in my arms. The only sure relief is the squeeze my calf muscles which feels great for 1 second before my leg cramps and I'm stuck trying to release the muscle. Does anyone else do this? The other thing I do at night is stand on my tip toes and walk around. It feels like the only relief will come when my muscles are too tired to tingle anymore. I am 28, do you think this will get worse?

Published: June 27

I get the typical crawling sensations but sometimes I experience something very different. My leg feels very warm (it is not warm to the touch) and my skin feels like it's stretched very thin. As if my leg was extremely swollen. Also, I have recently experienced the same restlessness in my arms. I was glad to read that that isn't just my imagination.

Published: June 26

I am so glad to know that this is not just in my head, and that it is a real ailment. It feels like an uncontrollable urge to move my legs, sometimes like riding a bicycle. Sometimes it is a jerking sensation, and when I try to hold it down it gets worse. I have been on Requip-generic for a couple of months, and have found when I get groggy the next day, the doctor says to cut pill in half. That has seemed to work. However, I have discovered that when I get very tired or agitated, that it seems to flair up at night. Also, if medication is taken an hour before bedtime, it seems to help more. I have, also, found that the heating pad helps.

Published: June 24

I have had RLS since I was a child (the doctor's said it was growing pains) and it has worsened as I have gotten older (I now am 63). I describe my symptoms as comparing the nerves in my legs and arms to the strings on a guitar. When the string is plucked it vibrates, and when RLS kicks in, it feels like my nerves are vibrating and they won't stop. Several years ago I began using a liquid mineral drink which brought relief for a few years but then that stopped working. I finally went to a sleep clinic and have, for the first time in my life, found consistent relief. I take 1 mg Requip at 6:00 p.m., and 2 mg. at 9:00 p.m. WITH one Tylenol #3 and I am able to sleep! Occasionally I will have symptoms but a 20 minute soak in a hot bath will resolve the issue.

Published: June 24

I've had RLS for 40 years. Nobody new then what it was. Finally I went to a Dr. and he gave me Klonopin. It helped for about 3 years since I've been on many but the last 5-6 Mirapex. I have it in my shoulders arms fingers also. My legs have attacks about 3-4 times a day. I take Mirapex 2pills 3X a day. I just can't to get relief for the past 3 Mo. I haven't slept all night for probably 6 Yrs. I feel like I'm loosing my mind. I need some relief somehow. I'm sitting at the PC and my legs are so bad I can't sit here. I took 2 pills about 2hrs. ago and hasn't let up. It doesn't matter if it's early late standing sitting I've tried it all. Why can't somebody find the cure. Please any advice would so be appreciated.

Published: June 19

I’m relieved that I’m not the only one that gets the RLS sensations in my arms at night. I have only ever heard of this in legs, and it’s so uncomfortable. The only thing that I found that lets me get to sleep is to have a painkiller or aspirin about an hour before I go to bed. It’s not an ideal solution I know, but it’s the only thing that takes away the feelings and lets me sleep.

Published: June 18

I’m a 34 year old male, and have had RLS for a number of years although I didn’t even know what I had until I recently saw a commercial for a prescription drug describing the same symptoms I have when trying to go to sleep. Unlike most people though I have RLS in my arms instead of my legs. I haven’t tried taking any prescription drugs for this, but I have found that doing a lot of pushups until my arms are worn out helps most of the time. The only problem with this is the more pushups I do over the years, the more it take to wear me out. I also try to take my mind off my arms, think about my day, or what tomorrow will be like. This also seems to help. I hope this info can be helpful.

Published: June 18

I got RLS when I was pregnant 2 yrs ago. I was told it would go away but all it has done has gotten worse. I have had about 2 hours of sleep each night going on 2 weeks now and I really think I am going insane. The best way I can describe it is lots of spiders crawling around the inside of my legs and sometimes my arms. The doctor started me on Requip which calmed the symptoms of the RLS but had me vomiting every night.

Published: June 12

I have had RLS for a number of years now but only recently have I managed to link it to when I eat a lot of dairy produce, cheese being the main one. Since I’ve cut down, I have noticed quite a difference.

Published: June 11

I am a 30yr old female light smoker and occasional drinker, I have had RLS for a number of years now and have most of the sensations RLS sufferers get its extremely uncomfortable, on the odd occasion strangely when sleeping at night I have had the same sensations in my arms where I feel the urge that I have to move them. I have recently been told that there is a link to RLS and high cholesterol.

Published: June 10

I have had RLS for years; it seems to be worsening as I age, (43yrs old). When I was younger, it was worse after working two or three night shifts. Now, I have it all the time, jerky, twitchy, painful legs. Usually a hot bath will help, but now that doesn't even work, since I am typing this at 3:35am!

Published: June 09

My RLS symptoms first started about 8 years ago, when I was 40, and have gotten progressively worse in the last year. My particular problem is uncontrolled jumping and jerking of my legs. Having something on my lap, a book, pillow or anything that is applying even the slightest pressure starts my symptoms going. Even the touch of someone’s hand on my thigh worsens the problem. I started taking Requip and have found it to be very helpful. The only problem I've found is prolonged drowsiness the following day. I've experimented with different dosages and found .75 mg to be the best. However, I'm still bothered enough by the next day drowsiness that I'm going back to my doctor. I hope you have better luck with this new medication than I've had.