Patient Comments: Restless Leg Syndrome - Symptoms

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

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.

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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.

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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.

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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.

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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.

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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.

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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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