Patient Comments: Restless Leg Syndrome - Symptoms

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

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.

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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.

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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?

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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.

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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!

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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.

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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.

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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.

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Patient Comments

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Restless Leg Syndrome - Experience Question: Please describe your experience with restless leg syndrome.
Restless Leg Syndrome - Treatments Question: What method did you find most effective in treating your restless leg syndrome?
Restless Leg Syndrome - Remedies and Alternative Treatments Question: Please share remedies and alternative treatments you've tried to manage restless leg syndrome.

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