Patient Comments: Restless Leg Syndrome - Symptoms

Question:

What symptoms did you experience with your restless leg syndrome (RLS)? Submit Your Comment

Comment from: Tlsp, 55-64 Female (Patient) Published: February 22

I have had restless leg syndrome (RLS) and periodic limb movement disorder (PLMD) for most of my life. I started falling asleep at work 30 years ago and have not been able to work since. I have it body wide, hands, arms, legs, feet, and other private places. It worsens with age. Yes, motion helps but I can only go on for so long. Mirapex brought my life back 20 years ago and helped immensely but now I am having daytime symptoms and not getting enough restorative effect again. Due to sleep deprivation my memory went 30 years ago. And now they want to blame my current state, the same memory problems as 30 years ago, on dementia because I am older. RLS has no easy answers. It may not be life threatening but it is life changing. Keep in motion.

Comment from: wordwrkr, 45-54 Male (Patient) Published: January 12

I'm 60, and I've been plagued with canker sores as long as I can remember. When I was a kid I used to put ketchup on them to concentrate the pain into just a few seconds, followed by a few precious moments of pain-free existence. But I recently stumbled on a cure; not just a treatment for the pain, but a cure, at least in my case. I take a big drink of carbonated water and swirl it around in my mouth. A couple of times a day does the trick. If the canker sore is just emerging, it's gone by the next day. If it is full-blown, it is better within an hour (stops hurting immediately) and within just a few days it's gone. My treatment before I discovered this was simply to treat the pain; Anbesol applied topically. It tastes awful, and the relief lasts for only a few minutes, but it was better than nothing. Since discovering the power of simple carbonated water, however, I haven't had to use Anbesol at all. Carbonated water works! And it doesn't taste awful. It stops the pain and radically speeds the healing process.

Comment from: Treska, 25-34 Male (Patient) Published: September 14

In November of 2012 I had an elective operation on my right foot. The very next day I stepped the wrong way and broke the same bone. The surgery this time involved a plate, screws, and a bone graft. Followed by two and a half months of non-weight-bearing. I have difficulty with balance due to osteoarthritis and fibromyalgia so I used a knee walker for that time. Also because of fibromyalgia I have very tight muscles so when I was finally allowed to put weight on that foot I started to get pain in the back of my knee. I didn't think much of it at first but when it continued I mentioned it to my doctor (a podiatrist) who said it was from being immobile and to do stretching to improve the range of motion of the knee. So here I am almost four years later and my orthopedic doctor, who had been treating me for arthritis in both knees, diagnosed me with hamstring tendinitis yesterday. The corticosteroid injection he gave me began to relieve the pain (because of the lidocaine) and now I'm scheduled for six weeks of physical therapy. I just hope that this will help with the constant pain.

Comment from: V, 75 or over Female (Patient) Published: June 28

I developed athlete's foot after being away from home for 4 days and developing blisters on my feet from wearing the same shoes after standing a long time (feet swelling). It is summer and I don't know if I picked it up from a hotel bathroom or if I got it from my husband as his gets intermittent athlete's foot. I think having the blisters made it easier for me to pick it up. It is awful!

Comment from: Pretty Redd, 35-44 Male (Patient) Published: May 25

I found out that using Sergeant's Skip-Flea and Tick shampoo for dogs and puppies cleared my scabies up. Take a shower morning and at night using this shampoo. This shampoo is inexpensive and gets the job done. It has 10 percent of permethrin in it. As of this day I still use it to avoid re-infestation.

Comment from: rufus, 55-64 Female (Patient) Published: June 15

I have very bad muscle spasms. The doctor thinks it could be low potassium. After reading the symptoms, I think it fits because, I am bipolar and I am going through a manic episode right now. I thought that was because I stopped taking my Depakote. In 2 weeks he has scheduled me for a blood test to find out if I am low in potassium.

Comment from: Lisa, 65-74 Female (Patient) Published: May 16

I have had 6 deep vein thromboses (DVTs) in my right leg and one in my lady parts after a tubal ligation 18 years ago. I now have been getting phlebitis. I don't experience pain, but my leg looks discolored, purple/blue and there are spots where the blood pools. I take two blood thinners and am constantly at the doctor's. My doctor looked away after seeing my leg. I am 50. I should not be dealing with all this. I move around all the time and I am not sedentary. It's so upsetting to see my once nice legs look beat up and almost bruised. I am looking for a solution for getting rid of the phlebitis. My veins are popped out, my knee has a knot in it and my ankle looks terrible.

Comment from: Shar, 55-64 Female (Patient) Published: February 03

I came home with a backache and very tired! I tried to eat supper but only ate half of my supper! I got up at 3:00 am with a fever, pain in all my joints, diarrhea and felt like I had the flu! I was sick with diarrhea all day the next day and called the doctor. The doctor saw me the following day and said I had a gastro virus and to eat a bland diet, bananas, rice, applesauce and toast, and drink a lot of liquids! I did but every time I ate I was on the toilet with cramping and diarrhea! I have had this gastroenteritis since this past Tuesday and it is Sunday and I am still crampy and in the bathroom all the time! It really is scaring me because I cannot hold anything! I don't know how long I should wait to go for other tests.

Restless Legs Syndrome Slideshow Pictures
Comment from: Bektreks, 25-34 Female (Patient) Published: October 14

I have suffered with restless leg syndrome (RLS) from childhood and so has my mother. She suggested I stand on a cold floor, and move around for a few minutes. But this only helps on the very mild nights. The only thing I have found to work is Tiger Balm. I rub a large amount from my knees to my toes and it relieves my legs within minutes. I would never be without it or a similar product which produces such a deep heat.

Comment from: Mary, 65-74 Female (Patient) Published: September 16

As a child I had 'growing pains' and my mother used to rub my legs to ease the pain during the night. I first had what I called 'jumpy legs' during my first pregnancy. I had no idea what this was. I have had this condition since I was 21 and it can occur at any time. Mainly when I am sitting, at a show or movies, and at night. It drives me crazy. Only recently it has been discovered as restless legs syndrome (RLS) and after thinking I was going mad I am relieved that this is actually something that a lot of people suffer from. My doctor has prescribed Xanax which can help but do not want to use this as it is addictive. My mother had it, my daughter and now my granddaughters! I find a warm shower helps, especially through the night - sometimes I have three showers! I was prescribed OxyContin when I had a hip repair, and it helped with my RLS. Of course the doctor is reluctant to prescribe this narcotic. It feels as if my legs have a mind of their own and twitch, jump etc. Just recently when it is bad I have had it in my arms as well. I believe that it is a condition that appears to fall down the female line in families. I don't want to experiment with many drugs. I find doing something that interests you will take your mind off it, i.e. sewing or knitting (as I did when I was pregnant). I think it is a terrible condition. I will only fly business or first on long flights, as it is dreadful when flying or when you are stuck in one place for long periods of time.

Comment from: Clancy, 65-74 Female (Patient) Published: August 05

My restless leg syndrome (RLS) reminds me of Christmas lights that go around on the cord - up one side then down. I also have twitches in my toes. The little toe and the one next to it just keep moving and twitching which is more annoying than the leg thing. I have been prescribed pramipexole to take before going to bed and so far it has helped.

Comment from: fredie, 55-64 Female (Patient) Published: December 23

It was great reading the stories of others with cauda equina syndrome (CES). The crazy thing about it is they the articles say this is a rare thing, yet many have it. In February of 2015 I came away from an accident that I should have not. Had I been 3 inches taller I wouldn't have. I got an L1 bust out of the deal. Two days after surgery I could walk but had no bowel or bladder control. It has been 11 months and they have yet to return. The loss of sexual feelings is a hard pill to swallow. I ended a 30 year marriage because of lack of sex. This CES far worse than that. It is sometimes a blessing to cheat death and an injury like this gives one the hard lessons which are sometimes needed. With CES one doesn't know their bowels have released until everyone else knows. Thank you for the great stories because as rare as they say this is, it sure seems like there is a lot of us in the same boat.

Comment from: Don, 35-44 Female (Patient) Published: August 19

I used to get bad cramping in my legs growing up. Over the past several years I stopped getting cramping but started having uncontrollable leg jerks, rarely through the day but mainly in the evening when I am trying to relax. Now I am only getting the jerking in the right leg and the left is fine. I am also waiting to see an orthopedic surgeon about my right knee and ankle and wonder if there is a link between my bad knee and the jerking in the right leg. I've never been diagnosed with restless leg syndrome (RLS) but now reading RLS could be related to nerve damage, it is a worry that there is a correlation between my knee and the leg jerking. I find nights I've been to the gym I don't get the jerking.

Comment from: Reggie, 55-64 Male (Patient) Published: June 04

I only noticed restless leg syndrome (RLS) when going to bed at night. A strong feeling to keep my legs moving and the only thing I found to help was to tighten my leg muscles to the maximum as long as I could. When I stopped it seemed to go away and be relaxing. At most I might have to repeat the process 2 or 3 times before I would fall asleep. Recently the feeling traveled to my arms. That is when I got hold of my doctor to get something for it. Walking 2 miles after dinner would keep it from happening. After a few years of that I got lazy and they came back.

Comment from: ALICE, 75 or over Female (Patient) Published: March 03

I have had this feeling at night for about four years, RLS (restless leg syndrome) affects my stomach more than my legs. I feel it is more to do with my nervous system, I have not had a full night's sleep for months, I just hope it goes away one night. I am 75 years old, fairly fit and do loads of walking (with my dog), so don"t know what to do.

Comment from: bipolarbunny, 35-44 Female (Patient) Published: July 11

This article is the gentlest description of restless leg syndrome (RLS) I've ever read. It's like there are maggots crawling in your muscles and vultures are ripping the meat from your bones and nobody has told them that you're not dead yet. It's not pain. Pain is like love. You know it when you feel it. This isn't it. It is, however, every bit excruciating. In fact, it may actually be worse. But it's hard to explain, the way you can't explain pain or love. Trust me, if it happens, you'll say, 'Oh, this is RLS.'

Restless Legs Syndrome Slideshow Pictures
Comment from: a pinson, 65-74 Female (Patient) Published: May 29

I went for a sleep study because I got up each morn feeling tired. I had problems staying awake in daytime. My test showed I didn't have a sleep problem, but my legs moved about 50 times during the night. So I was dealing with RLS. The doctor prescribed Mirpex, but it costs so much I had to take the generic brand for Requip. It does not work as well and I have really bad dreams. So I have decided to stop taking it. I am taking klonopin which is helping me rest.

Comment from: stevo, 55-64 Male (Patient) Published: May 09

I have had rls for 30 years, I could get away with cooling my legs with cold water about half hour after going to bed but now it is getting worse, some things to try are cold water on legs, 5 minutes on exercise bike, hot shower. It seems that when I go to sleep and just start falling into a deeper sleep my brain release adrenalin and until I burn off this adrenalin I cannot go to sleep. Wearing socks and flannel sheets helps also.

Comment from: Bones, 45-54 Female (Patient) Published: March 28

I have had restless leg syndrome (RLS) for so long I can't remember when it actually started. The last few years it has become increasingly worse, and it has also started earlier in the day now. I have tried Repreve (ropinerole) from the doctor, but it is so expensive ($50 for a month's supply). I decided to try out other options and so far the best that works for me is keeping slippers on so my feet so they don't get cold, and about an hour before bedtime I take two magnesium pills. I then rub my legs with deep heat, and put flight socks on. I look charming, but it actually enables me to sleep. During the winter I also put an electric blanket on to keep my legs warm. Some nights I still get up a couple of times, but this seems to work for me at the moment.

Comment from: Barbisurf, 35-44 Female (Patient) Published: November 07

I have had restless leg syndrome my entire life. When I was little I would just lie in bed and tell myself stories to try and calm the crawling feelings in my legs and would always wake up with the covers looking like they had been in a blender and me sleeping on the floor, halfway off the bed, or with my head at the other end of the bed. I had a sleep study when I was 35 to see what was preventing me from getting a good night rest and it was then I was diagnosed with restless leg, plmd, severe bruxism, and I never reached past REM stage 2 which explained why I was sick all the time and sleepy during the day. I have other medical problems as well but have tried reequip which made me vomit, Neurontin which made me dizzy and faint, and Mirapex which caused me to be even dizzier and vomit. I am on the Fentanyl patch and Norco for pain to help my other conditions, but something that has worked for me is to lay on my stomach with my feet hanging off the bed to sleep. I also take 20 mg Valium and 10 mg Ambien with 10 mg Flexeril. I sleep best after midnight until noon and still wake up 2-5 times a night. I am now 43 years old.

Comment from: Kayla Igleheart, 19-24 Female (Patient) Published: November 01

I'm 21 years old, I've had RLS for about 8 years now. My mother also has it. I didn't ask her about it till I was about 15. I get the intense urge to move my leg and if I resist my leg muscles spaz and jerk and it can be very painful. I also get an intense painful itch, mostly on my thighs. When I was younger I would just do 1 minute of squats to work out my muscles then jump into bed and try to clear my mind so I could fall asleep ASAP. Now that I've been pregnant, and am currently pregnant, it has gotten so much worse and that rarely works anymore. During my first pregnancy, I took a lot of hot showers before bed, my RLS gets much worse in the winter, when it's cold, so warm water helped. I had no idea there was medicine available. I will be talking to my new doctor about treatment. The other simply told me to walk more. I walked everywhere, all day, it didn't help. Then he told me RLS didn't exist. I almost cried I was so upset, I'm glad I looked it up, kind of inspiring to read other peoples stories of dealing with this insanity.

Comment from: Bporche, 45-54 Female (Patient) Published: September 16

I have had RLS for over 25 years now and have been through Requip, Sinement and another that I do not recall (I think it was Savella) and none worked for any length of time. The best cocktail so far has been gabapentin and klonipin. I experience severe pain when at rest and most of the time movement is the only solution. I'm not ready for the opioids yet. I can't wait for Horizant to see how well it works. Peaceful and non painful sleep seems like a dream sometimes.

Comment from: shelley, 45-54 Female (Patient) Published: September 16

I can't stand another night of not sleeping. I have a very busy life looking after a lady with ms and a handicapped man who lives with me. I have 3 adult children as well. Somebody please tell me what I should take. I stopped dairy for a year and it did help but I no longer want to go without milk products unless I have to. My doctor prescribed Quinine and it made me pass out. I will do almost anything at this time.

Comment from: dikins, 65-74 Female (Patient) Published: August 11

I am 66, start having restless leg about 3 months ago. When I told my doctor about it he put me on pramipexole. It worked for a little while, but then I started having horrible dreams. This is one of the side effects. Now it just takes too long to work if at all. I think I will try something else to help my condition, but not by prescription.

Restless Legs Syndrome Slideshow Pictures
Comment from: andrea, 45-54 Female Published: August 10

My restless legs started about 25 years ago at a time when I was running a baking business. At that stage it involved my whole body "jumping" involuntarily and when standing my legs would "wobble" at the knees, I was then unable to walk for a period of about 10 months. I gradually improved and my walking returned and jumping legs happened only at nighttime just before falling asleep or after long time sitting. By chance I gave up gluten a year ago, as I had cramps and bloating, and I suddenly realized after a few weeks that I no longer had restless legs, if I do break out and eat bread/gluten I get jumpy legs. There has to be a connection!

Comment from: katl72, 35-44 Female (Patient) Published: October 08

I'm 40 years old and I don't remember if I had issues as a child. I do know for certain that the more stress I'm under, the more I have restless leg syndrome (RLS). I take too much medicine (over-the-counter, not prescribed) more than I should to fall asleep and sometimes that's not strong enough. I'm hoping when my stress level gets lower I will be able to sleep normally again. It's almost to the point that I don't look forward to sleeping until I can't keep my eyes open anymore.

Comment from: Chi-town Girl, 35-44 Female (Patient) Published: August 16

I have been suffering from severe RLS for many years now, my arms and legs are affected frequently. I have finally found two things that work for me quickly so I can go to sleep, though I don't have a solution for during the day sitting somewhere. The first thing I found was laying on my stomach with pillows propped under one side and my arms pinned under me with my feet off the end of the bed so I can rub them together works, but don't know why. Then I found Hyland's Restful Legs at Walgreens! This works almost instantly for me, I am so happy to have found it. I keep it in my bedside table and use it often!

Comment from: dljodin, 55-64 Female (Patient) Published: August 16

I have had restless leg syndrome since I was a little girl. Everyone in my family has it to some degree, but I have it the worst. I suffer with it almost all day, everyday. I remember getting in trouble in fourth grade because I couldn't keep my legs still. I have been taking requip for years and it works great, just not for 24 hours like I need.I do have to keeps anti-nausea medicine on hand though for the times that the requips make me sick. When I can't take the requip for whatever reason, I do take vicodin which helps, but then I have to take benedryl because the vicodin makes me itch so bad. I am so sick having to take medicine, but glad that it's there. Anything is better then the misery of Severe Restless Leg Syndrome.

Comment from: Sharman, 19-24 Male (Patient) Published: July 17

I cant even remember when it started. Although its worse at night, it affects my legs all day. I do take a lot of caffeine which of course makes it worse. Few things that O have found helpful are: 1. I take a long sock and use to tie my ankle or the sole of my feet relatively tight. 2. When someone touches any part of my feet, it gets a lot better. Recently. I have found another remedy. When I strongly massage the outside of my thigh, it gets a lot better. I basically run the palm of my hand very strongly down my upper thigh so that my sole feels the rub. Unfortunately, the effects of all the above are very transient.

Comment from: 65-74 Female (Patient) Published: July 02

I have had rls since I was 4 yrs old. I can't stand anyone putting their hand on my legs, can't stand hose or sox, long pants or skirts. I now have it in my arms too, for the last 25 to 30 years. It feels like somethings crawling inside your skin, anything touching your legs/arms makes it worse ,clothes, even air from a fan . Your nerves are on the outside of your skin, you feel everything 10.000 times more than other people do. You don't hurt but you cannot stand being in your own skin. You cannot not sit, lie down, relax as soon as you do it starts the tingling and crawling and just gets worse and worse.

Comment from: In agony!, 55-64 Female (Patient) Published: June 28

A restless, painful, and unsettling in my legs. Hard to describe. It feels like it's in the bone itself but yet the muscle?

Comment from: in agony!, 55-64 Female (Patient) Published: June 28

My RLS started when I was about 6 years old. The doctors thought that I was crazy for a long time. Then just about 4 years ago my doctor put me on Levocarb! My miracle pill! However, just recently its been acting up again quite badly. They would like to decrease my dosage but I can't see it.

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

I am 27 and have had RLS for about 10 years. In the past two years it started getting really bad. I would use hot water on my legs for a few mins. before bed. That helped a lot. But then it'd wake me up every night and occur during the middle of the day. So I started taking Pramipexole (10mg) at bedtime. I think I started taking it about two years ago. It works perfectly! The only thing is that about a year and a half ago I started getting bad nightmares. I am not sure if it's the meds or psyhological. My parents have been going through a divorce for the past year and a half and around my grandmother's death is when nightmares started. Is there a different med to try? Help please!

Restless Legs Syndrome Slideshow Pictures
Comment from: Tara, 45-54 Female (Patient) Published: February 19

I have had restless leg syndrome for at least 25 years. I didn't mention it to my doctor for a long time. I thought, “what do you say?” That your legs have the heeby-geebies or creepy crawlies? I tried Requip which did not help. I have been taking Clonazepam about two hours before bedtime. It does not help the symptoms, at night watching TV or sitting my legs still will drive me crazy. Before I started taking it, I would lay in bed for 2-3 hours and not be able to fall asleep because of my legs. Now, even though I still have the symptoms, even after taking the medication, at least once I actually lay down to go to sleep, I fall asleep. I can hardly go to a movie without jumping up and running out, same with being on an airplane. It is not fun.

Comment from: CCM, 55-64 Female (Patient) Published: January 09

I have been diagnosed with sever RLS. Not only do I have it my legs but I also suffer with it in my arms on a really bad night. I have been taking Mirapax for a good number of years and there are days when even that doesn't prevent the RLS from keeping me awake all night long. Recently, I have started getting acupuncture and I am finding it helps me greatly. I have been able to lower my dosage of Mirapax and I hope that eventually I will be able to stop taking it all together.

Comment from: 1968lori, 35-44 Female (Patient) Published: January 07

I first experienced it years ago, when I was pregnant. I just thought it was achy legs. I recall sitting at the theater and I got up about 10 times to move as my legs felt like they were ready to jump out of the skin! I've had random nights (10/yr) where it bothered me but I never thought much of it. Last month it hit me HARD. Every single night, relentless, extreme aching, twitching, uncontrollable urge to shake and move my legs. NOTHING has helped other than to get up and walk. We just moved into an old home with hard wood floors and when I'm walking around at night, the squeaky wood wakes everyone up. I've tried hot baths, Vicks vapor rub, electric blankets, iron, Vitamin-B, bar of soap tied to my leg, everything. I finally went to my Dr in tears and said if I don't sleep soon, I'm going to knock myself out with an iron skillet. I was desperate. He gave me Lunesta to help get me to sleep. Worthless. I tried Requip. MIRACLE! From the first night, I fell asleep, stayed asleep and am finally getting relief. My only concern is that I keep reading about patients who have augmentation of symptoms after a while (50-80%) and have to steadily increase the dosage. I do NOT want this to happen to me. So far I'm doing fine on only .75 mg of Requip. She also gave me Alprazolam if needed. I haven't tried that but I'm thinking maybe I should switch to that instead? Also, the Requip gives me horrid headaches.

Comment from: Suzy, 35-44 Female (Patient) Published: October 15

I experience the sensation in my ankle and at the back of my leg right at the bottom down towards my foot. So I don't know if that is classified as RLS. The two worst places are on the sides of my feet on the arch, (not the outside part) and the back of my calf right at the bottom, and have to keep flexing my feet up. A bath can ease it a bit, and I find it's worse in the hot weather. It's like a shooting energy going down towards arch of my foot. It feels as if the energy that can't flow through like its blocked. Feels almost hot, not a pain.

Comment from: BGoddess55, 25-34 Female (Patient) Published: July 24

My symptoms with RLS have been fatigue, itching feeling under the skin, tingly, sometimes slight numbness, achy muscles, my legs sometimes jerk during the evening hours, especially bedtime, which makes it impossible for me to rest. Sometimes I even experience fatigue and achy, tingly pain in one of my arms, due to RLS.

Comment from: c in Montana, 65-74 Female (Patient) Published: July 24

I have had restless leg syndrome (RLS) for many years now and at 65 it just seemed to get worse. I have tried a lot of over the counter and other things that people have said helps them. I have it in my arms and legs and felt like I was always so tired from this. Even my evening reading in bed came to a halt. Went to the doctor and she put me on 5 mg Loratab an hour before bedtime. I can't believe how this has helped. I have taken this just at night for almost a year now just at night same dosage. If I don't take it before the restless leg syndrome starts I need to take 2 of the 10 mg. I know this is a narcotic but I don't abuse this and if I have to take it the rest of my life I will. The quality of life has improved 100 percent for me!

Comment from: roperdoug, 55-64 Male (Patient) Published: July 06

My legs were itchy, crawly, and jumpy as if someone was tickling me. It's not painful for me, just irritating.

Comment from: irritable, 65-74 Female (Patient) Published: April 18

I have had restless leg syndrome for many years. It's a creepy-crawly feeling, starting below the buttocks, and is a constant annoying feeling. I take magnesium powder two or three times a day, which helps a bit. It is worse at night, and affects my sleep. I take several medications, but not for RLS. I am yet to find a doctor who can prescribe something. Most nights I cannot sleep because of the irritability of constant movements in my right leg. I feel like screaming as it is unrelenting.

Restless Legs Syndrome Slideshow Pictures
Comment from: Selah, 45-54 Female (Patient) Published: March 05

Usually when relaxing in the evening, or just before sleeping, one leg will feel like a surge of electricity (energy) is going to make it explode. Sometimes it jerks by itself, sometimes I jerk it to relieve the explosive feeling. In my case, I have found restless leg syndrome (RLS) to be caused by consumption of caffeine and sugars, or by prolonged stress. A quick, safe remedy I use is to rub the leg down with isopropyl alcohol. Within minutes my RLS subsides.

Comment from: Andrea Diniz, 55-64 Female (Caregiver) Published: November 01

I need to know if there is relationship between RLS and high levels on ferritin. Thanks Andrea Diniz

Comment from: Shelly, 55-64 Female (Patient) Published: October 04

I am 57 and have had restless legs syndrome for about 35 years. About 10 years ago, my arms started bothering me. I now have RLS only occasionally, but my arms drive me crazy almost every night. I have pain with my arms as well as the restlessness. I tried Requip, but it made me fall asleep with no warning -- almost like narcolepsy. I wasn't sleepy; I just dropped asleep. One of my daughter's friend's mom had the same thing happen, yet the doctor and pharmacist say they have never heard of that side effect.

Comment from: akhtrs, 35-44 Female (Patient) Published: October 04

I have been suffering with RLS for years, but the intensity increased when I was diagnosed with MS. I know what lack of sleep can do, so for anyone who wants relief, I strongly suggest Spirulina. Since taking Spirulina, my RLS has disappeared, and it also helps with sleeping issues and increases energy levels.

Comment from: Mandy123, 45-54 Female (Caregiver) Published: October 04

I have had RLS since my early 20's. I am a 53-year-old female. My feet will get really tingly and itchy. My doctor has put me on gabapentin and Klonopin. They are not helping much anymore. I take Vicodin for my back, and that seems to help some. My legs ache all the time. I cut out caffeine, but it's still bad. I feel as if I am stuck in a loop. I am so tired because my legs bother me, but I can't sleep. My doctor says she can increase the gabapentin, so I will try that. I also saw someone said putting Vicks on your feet will help, so I will try that, too.

Comment from: Rachel, 65-74 Female Published: September 13

I can some relief with one half pill of my prescription of klonopin. Also a red hot shower sometimes works. I am 72 and have struggled with this for years. Also a hot cup of decaf tea and knitting can work. My dad had it - he soaked in a hot bathtub (this was before showers).

Comment from: friskiekatz, 55-64 Female (Patient) Published: August 31

I started having RLS in my 50's. I can't stand it. It's three in the morning before I fall asleep. My legs have to move. I have crawling sensations down my legs.

Comment from: Iamasinger, 65-74 Female (Patient) Published: July 29

I am a 67 year old female. My RLS symptom is an uncontrollable urge to move my knees. Last night I spent 6 hours in a very busy ER trying to get some relief. The single doctor on duty gave me a Lorazepam...an antidepressant! Needless to say, I didn't take it, because I am a very positive person--a Pollyanna, whose glass is always half full. I was on Mirapex, but can't afford it anymore, being on Social Security and a small pension. I will call my doctor about Tramadol, which I read about on this site.

Comment from: Suzy, 65-74 Female (Patient) Published: April 18

I have had restless leg syndrome for many years. For the last 15 years I have been taking Klonopin, which has been very helpful. Although my symptoms have gotten worse over the past two years and my doctor has added Trazodone to the Klonopin to help me sleep. The horror of the creepy, crawly, jerky, jumpy, pain that I feel is just too much not to try whatever I can to make it stop. I intend to get off caffeine just as soon as I can, and I'm also going to try Magnesium (I heard that it helps). I do feel better when I exercise too. At night, when the medication isn't working any more, I get up and exercise, focusing on the area where the jerking seems to be originating from, in my case, my lower back. I hope this helps somebody.

Comment from: RLS in WNY, 35-44 Female (Patient) Published: March 28

Since I was a young child, when I would sit to watch TV in the evening, I would experience what I called "jumpy legs." The symptoms included severe cramping and pain in my legs and feet, which was only relieved by strongly kicking my legs, flexing, and extending my legs and feet. All of which just seemed to make it worse despite initially feeling good. My parents thought I was making it up for attention and no matter how I tried to explain the sensation, they never understood or even believed me. I was in my 30s before I realized it was an actual medical condition and sought treatment. As an adult, the restless leg syndrome (RLS) has worsened as I age. At times I lie in bed kicking, stretching, flexing and otherwise trying to fight against the pain and uncontrollable urges to move to the point of crying. It's incredibly frustrating! It is always worse when I am really tired.

Restless Legs Syndrome Slideshow Pictures
Published: March 13

I am a 50 year old female who has suffered for the past two decades with Restless Leg Syndrome RLS/Wilkes-Barre Syndrome and have been nothing short of miserable. I'm thankful for Requip (generic Ropinirole.) This prescription medication for Parkinson's disease has been a lifesaver for me! Mirapex or Requip? Go with a prescription medication (either one) and you should have good results. This (Ropinirole) has been the ONLY thing that has worked for me. Good luck to all you sufferers out there!

Comment from: belinda666, 55-64 Female (Patient) Published: March 13

After struggling with restless leg syndrome (RLS) for two years due to stress, I finally went to my doctor. He prescribed mirtazapine 15 mg. However, I'm not keen on taking antidepressants, so I snapped it in half and took 7.5 mg at night. I was amazed to find it took the pain away! I couldn't believe it. I've stayed on 7.5 mg and now my nights are good.

Comment from: Jeanette, 35-44 Female (Patient) Published: March 05

I used to take Fentanyl patches and it felt like my legs were crawling. This was due to withdrawal symptoms, which usually occurred 8 to 10 hours before I changed my patch. Usually the patch is changed every three days and I was in pain on the third day so it was changed to every two days, which some patients need. I just couldn't describe the feeling other than nausea, vomiting, and feeling my skin was crawling. I got fed up with it and got off the patch, I suffered withdrawals for two weeks. I started on a different medication, and I felt so much better. My legs don't hurt, my skin doesn't feel like it's crawling anymore. My advice is to get off of Fentanyl patches if you think you have Restless Leg Syndrome (RLS).

Comment from: Kathy Starkey, 55-64 Female (Patient) Published: February 24

I am a 56 year old female. I found out I have RLS when I went for a sleep apnea test 5 years ago. I have been taking Mirapex ever since, just 1 pill two hours before bedtime and I don't have any problems throughout the night.

Comment from: Patricia, 65-74 Female (Patient) Published: November 04

My symptoms are burning sensation in the soles of my feet. Makes sleep difficult and when I do get off to sleep it can wake me up. Only solution for me is to get into a HOT BATH. I have the water as hot as I can bear it and massage my legs and feet. Some nights I have to do this twice to get any kind of relief the end result being I suffer from chronic tiredness due to lack of sleep. I have varicose veins and an underactive thyroid gland and take antidepressants.

Comment from: 35-44 Female (Patient) Published: October 14

Try eating a couple bananas every day! The potassium can really help with RLS. stay away from the potassium pills they can be bad for you if you take too much. You might even ask your doc to check your potassium levels or your iron level if either one is low it can manifest as restless legs. I eat bananas every day; take a calcium citrate w/ vitamin D and magnesium supplement every day. I rarely get RLS anymore but before could not sit or lay down for more than 30 minutes without getting the creepy crawly feeling in my legs. Hope this helps.

Comment from: Jenny, Female Published: September 13

If you're still growing I'm guessing it could be growing pains. Yes you do get growing pains when all your muscles, tendons are stretching to match the extra growth in your bones. Especially with growth spurts. I always thought growing pains was an old wives tale until the pediatrician gp we went to told us that yes they do get growing pains.

Comment from: 55-64 (Patient) Published: September 07

I was diagnosed with restless leg syndrome (RLS) and suffered with it most of my adult life. I take three 3 mg of Requip at night only because I teach during the day and it makes me feel weird. I take one Lortab in the a.m. which makes my RLS bearable. RLS is my worst nightmare!

Comment from: richjeanj, 65-74 Female (Patient) Published: May 30

Robaxin worked for my restless leg syndrome (RLS) for about 40 years. I guess I wore it out because it no longer works, but try it! I need something else now that does not put me to sleep all day.

Comment from: Connie, 45-54 Female (Patient) Published: April 23

I am a smoker and didn't realize that smoking can cause restless leg syndrome. My mother and two sisters also have RLS. I was put on Abilify for two years and did not have any symptoms, but two weeks after taking the Abilify, the RLS came back. I would love to get back on it, but my doctor says it's not a good enough reason. But she doesn't have the symptoms either…

Restless Legs Syndrome Slideshow Pictures
Comment from: 55-64 Female Published: April 19

I have had restless leg syndrome (RLS) all my life. So does my brother. We have always called it "crazy leg." It starts every night just after I go to bed and feels like I have an electrical current running through my bone marrow. It lasts from 2 to 3 hours and is pretty intense. Nothing works to relieve it. I must endure it. My husband says I have jerked in my sleep for as long as we have been married 29 years. My brother is bipolar and says he only gets it occasionally now. Must be the drugs he is on. But I don't want to take anti-psychotics. Guess I will have it until I die…

Restless Legs Syndrome Slideshow Pictures
FDA Logo

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Subscribe to MedicineNet's General Health Newsletter

By clicking Submit, I agree to the MedicineNet's Terms & Conditions & Privacy Policy and understand that I may opt out of MedicineNet's subscriptions at any time.