Patient Comments: Restless Leg Syndrome - Symptoms

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

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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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.

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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!

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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.

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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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