I have had Restless Leg Syndrome for years now. I am on Requip and the dosage has to keep going up every 12-18 months. The insomnia from this is killing me I am going to collapse one of these days. I kick my legs, rub them and nothing helps not even hot baths. I have paced the floors night after night to no avail, I am on the second floor now so I have to stop that so not to disturb my neighbors as I am not light, I am overweight and sometimes wondered if that caused this but that was ruled out of my mind as this happened when I was thinner too. Anyone have any ideas that I can try, at this point I will try anything I would love to be able to sleep again. I have tried mixing Ativan with the Requip but that only helped for a short time, I am still taking the Ativan 2mg at night for anxiety attacks though. I can't take it, I love sitting at the computer talking to you folks but I would like to sleep once in awhile too. My poor husband has been so patient with this but it is not fair to him, he worries about me not sleeping. My cats even cry out for me in the bedroom when they sleep with my husband which wakes him up. I am only 42 and these health issues are driving me insane!!! HELP SOMEONE!
Does anyone know the cause of Restless Leg Syndrome?
Question posted by marjorie zych on 1 May 2010
Last updated on 10 July 2021
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
27 Answers Page 2
Hi Marjorie, I just saw your post today. I have had RLS for 30 years and the older I got the worse It got. I take Sinemet 25/100mg. 15 to 20 min. before I go to bed and it is working. I take the generic. Some Relatives of mine take high doses of Folic Acid and it works, but it did not work for me. The dosage that is recommended is between 5 and 30mg (NOT MCG.) You must do this with your Doctors ok, it is a prescription. You should have your Folic Acid levels tested every few months.
One Relative takes 7MG and the other takes 15MG. It comes in 1MG tablets. Another home remedy I have heard about but have not tried yet, is to put a bar of soap under your BOTTOM SHEET near your legs. It sounds crazy, but I have heard it really works.
I think the best soap is Dove. My Sister takes 1000mg Calcium Citrate and 500mg of Magnesium and 600IU of Vitamin D at bedtime and it works for her. If you go to a Health Food store you can get capsules with all 3 ingredients in them. I hope this helps.
thanks pat621 I will ask about the sinemet. I appreciate any suggestions. marjorie zych
I'm on here looking for others who are going off of Requip, which my husband is doing at the moment. The Requip helps, but it seems like the longer he is on it, the worse the symptoms become when he forgets to refill, as well as symptoms starting much earlier in the day. Also, he is having lots of side effects which we think are due to the Requip (thrashing in sleep, vivid dreams, increased anxiety and compulsiveness).
A friend of ours, an older lady, has struggled with RLS for years and has recently started Omega-3 therapy. She is taking 6000 mg per day and told us her RLS has pretty much gone. My husband started taking O-3 but didn't notice a difference, until he took it right before bed. Last night he was like a stone in the bed. He didn't twitch, didn't thrash, didn't talk in his sleep.
When he woke in the morning, he didn't realize the difference (still felt like a train had run over him, fibromyalgia) but I, the co-sleeper, was astounded at the difference! He is on day 3 of his half dosage Requip so we will see if the O-3 continues to help as we get him completely off Requip.
lehite, thanks I went off Requip for awhile for the same reasons but now back on it for a week so far and yes the dreams are vivid. Please let me know how he does with the O3s and maybe I will try it too thanks marjorie zych
Hi Lehite!
Many people have reported increased RLS symptoms, when their requip is increased. Strange, I know, but it is one reason I stopped requip. There is a new drug, that is specific for RLS. The name of it is Horizant. It is similar to gabapentin (neurontin), but acts chemically different when taken... if I understand it right. Gabapentin is an very good med for RLS. It has been a miracle drug for many people. If the O-3 stops working, maybe the gabapentin will help him.
PLEASE READ, This gave me so much relief and well still does! I'm 38 and have RLS since I was a small child. I used to take Requip, it worked well. BUT, i have good news!! There is this topical gel that I get for my chronic back pain that I found out if you rub on your legs back and front and knees (everywhere you hurt), but don't massage in too much(you don't want to rub it in and rub it all away.) Okay, are you ready? the miracle gel is: Voltaren Gel (diclofenac sodium topical gel) 1%, it is by prescription only. My doctor prescribes it for my bulging discs, herniated discs, spine pain, and lower back pain, blah blah... Most important try to get your doctor to prescribe this or give you samples! I have lots of extra sample tubes, wish I could toss them your way :) Hope this helps a little :) thanks
manicbaby123,
Love the name. I have heard of the pill form of Voltaren which I cannot take because I am on blood thinners but I will check on the cream form it is probably different. Thanks anything is worth a try. I do have insurance now so hopefully it will not be a problem. I also tried Requip and it worked well for a while but no matter how much I take now it doesn't work so I will definately ask about the cream I have an appointment in two days so i will definately give it a try if the doctor says it is o.k.. Thanks again, marjorie zych Thanks for the offer of giving me some but I will try to get it don't want anyone getting in trouble. Thanks again my friend
Interesting with have to ask Dr for it I also suffer chronic low back pain have Fibro and RA
RLS is like a form of torture. I never heard of it until I developed it after my diagnosis of Multiple Sclerosis. I take 1mg klonopin @ bedtime which has gotten rid of it so far.
Unfortunately I do not know the cause,mine started after I was diagnosed with M.S. but as I've said Klonopin stopped it totally. I take 1mg @ nite
I also have RLS, and it can miserable. I have4 been on klonopin for a number of years and it has helped me. Sometimes if I am lying in bed watching tv, all of a sudden it feels like something crawling under my skin and I can't keep my legs still and I have to get up and move myl legs, but the klonopin has really helped. Sounds like you are really miserable. Good luck on finding some relief.
There is RLS med you can buy at walgreens its cheep. It desolves under the tounge and it dose not taste nasty at all to me. Anyways my husband has a problem with it too and the medication works for him. He is the type of person that won't take medication at all. I'm the type that will if it will and the med dose not work for me. I get it so bad I tryed to kill myself I couldn't take it and the tingle in my spine was the worst you can sit still for more then a second. I will say the thing that has worked for me no joke was vicoden or percoct. I have taking them when my RLS started up. Maybe it was because I was already so exaughsted maybe it realy works idk it helped me. And if you have a prescription for either I would give it a try. When your that misserable anything to help matters I know first hand. IT SUCKs. And I understand how u feel about your husband. I do feel bad too for keeping mine up and him wakeing up and basicaly going threw it with me. But I hope this helps. I also heard iron pills help too but I have never actually tried.
From Sacosam's "for what it's worth dept. A colledge i've never heard of "Tufts University" has been doing a study for over a year on RLS and so far they think the problem is a lack of a certain mineral in our bodies. I've got a pamphlet with an offer to join a study group on RLS, sponsered by them, but right now I can't find the damned thing... but I will find it ! ! ! ! I bought a jar of multi-minerals around the first week of June and have been taking them. While I will admit that my RLS problems are not as serious as some peoples [I was averaging1 or 2 attacks per month, each lasting 2 or 3 nights] they still bothered the hell out of me. SO FAR... I have not had an attack ! Tufts was curious about one mineral and last I heard was about to study it heavily. When I find that pamphlet again(don't hold your breath!) I'll let you know. Also for what it's worth is the fact that I posted the address etc.
of where and how to join the RLS group. It's a bit expensive ($30) a year but well worth it as you RLS sufferers know. Sacosam
it's gotta' be in the top 5 of my worst illnesses
Thanks itsmylife I will check into it. Sacosam thanks keep me updated if you find the info. Thanks all of you Klonopin doesn't do enough for me anymore I have tried Requip, Klonopin and many many others so far the only thing doing anything is Ativan 2mg and that is only mild help the others have been no help and Lyrica made me worse it made me suicidal so that is out for sure. Thanks all of you for trying to help. marjorie zych
i had the same thing and i to have thought about death,mine is so bad it hits me day and nightand i have been taking requip for years and it don't work so my doc put me on 300mg. of nurontin and still missarable
I have been on Klopin for several years. I started out with 0.5 and after a while it did not seem to help so my doctor uped it up to 2, but I take one with an over the counter sleep aid. Works for me. When the RLS starts kicking in I am miserable.
Kllonipin worked great for me for many years but I was advised to go off and I had horrible side effects even though I went off slowly. The side effects were bad but it worked so well I would love to go back on it. I am now on requip and it is not working as well.
I've had RLS almost all my life. It started when I was a preteen. As a child my parents would rub my legs with rubbing alcohol. It was an occasional problem from then on and I generally took pain meds to get me through tough periods. Then several years ago my doctor told me about Requip. It was like a miracle drug and still is. I freak out if I run out and a new prescription is needed. But I have recently found out from my husbands doctor that there could be effects for long term use of Requip. So I am thinking about asking for another med. But thinking about the cause, I used to think it had something to do with my monthly cycle. It was always very heavy and that's about the time it started. So I am thinking a vitamin K deficiency. But now my husband has it, and he is on blood thinners, and when ever his blood is too thin (vitamin K deficiency) is when his legs bother him. Not sure of course about all this, but just my thoughts.
I am on the Requip. I have been on it for awhile now, about 8-9years. What have you heard as far as side effects go? Please let me know as noone has ever told me there could be problems with long term use. I know mine is not a vitamin k issue though. I am also on a blood thinner called Coumadin and my Hematologist says no relationship with this. It may be different for you and your husband though we all react to meds differently. I tried several meds and the Requip is the only thing that has helped any at all. Even though it has to be adjusted sometimes I have found that it is the only one for me, I guess. Lyrica made me have suicidal thoughts and didn't help with the pain at all. So for now I guess it is Requip, but if you know of some problems with the long term use of it please please let me know if you can. Thanks a bunch. marjorie zych
Hi isleepnow (lucky you!)
If you were having the jerks with heavy monthly cycles, it is probably iron deficiency. That is one of the first tests that doctors run when someone complains of rls.
Hello Marjorie; I use a natural cure that works for me... "most of the time" ! but i'm not sure you can use it as it involves walking and you live on the second floor , but for what it's worth... here it is! Ingredients; "Quinine Water"[it's what you use to make various Gin drinks] most large Grocery stores carry it... OK , you drink 6 to 8 oz. Quinine water chug-a-lug , or nearly. Then you go for a 15-20min. walk... relax... when you get back home. drink another 4-8oz.glass of quinine water any way you want to and then to bed and good luck! Sacosam
I thought that was good only for malaria.learn something new daily..And I bet its alot cheaper than going to a MD if it works.I just looked it up and it says it relaxes the whole body
I don't think sacosam and his docs get along very well! I'm sure he knows a lot of home remedies and natures cures. Right, sacosam? ;-)
Right You are Dear Heart , but it isn't just drs. it's anyone who , rather than help another human in trouble , tries to tattoo a $ sign on thier back. If I could kick one big fat ass , it would be the ass of the #1 honcho of "Big Pharma"! and I would wear some bad assed shoes to do it. There are very good Mds. & Dos., but they are, or seem to be, very hard to find. think about this... if we find a good doctor , who, of us will be first to run out and spread the good news ! ! ! Mr. Bill
Saco. again... "Stay away from lyrica"! ENOUGH SAID !
the good ole gin and tonic 1st used in WW! by the brits to ward off malaria
No problem staying away from the Lyrica I do anyway because it made me suicidal when I did try it so no problem staying away from that stuff I reccomend everyone does too. Thanks
Hi crew; S.S. here again. Hey Sis' , can you give Bean Marie a shout. She heard about a drug that she said really works to stop restless legs, but I can't remember it , and probably couldn't spell it if I did. Quinine water works for me , (but i'm easy). Anybody ever try "AIR SWIMMIN'... or... "AIR BIKING"... drink 6-8 oz of Quinine water, wait a half hour to 45 minutes , lay down on your back and move your "BUTT"! (sorry, didn't mean to say that "HeH".."HeH"! ) no , seriously, move your legs bike style , or swimming style or hell any style 'till they're so tired you can't move 'em any more (15 min. max. guaranteed) drink another SMALL GLASS... of quinine h2o, 3 - 4 oz."cause yer gonna' Faa--- ! faahh--- ! Fa- a-h-h-rttt!!! L.o.L.! then rest for 10 min. or so. Your ol' man'll love ya'.! Sacosam I AM , I AM (;->)
Hello All; this is the "new" :SHY GUY" again... "Gin & Tonic"... (TANQUREY GIN & "What'sit'sname ? tonic water. Can't remember the tonic but I sure can remember the fun & frolic... "ayup"! But hell, one tends to forget things after 21 years ... SacoXdrunk sam, L.o.L.!
Sacosam, You are a riot I think I will post more questions I like these answers laughter is the best medicine. Try becoming a doctor will ya Dr. Sacosam I will be your first patient. Thanks again you cheered me up. marjorie zych
Howdy doody Sacosam, this quinine water you refer to, do you know if i can get it in Australia? does it have another name? I dont suppose you'd be interested in expanding a bit on what it does to your body etc. Or do i need to book you 30 days in advance ! (re: restless leg syndrome post) Anywho up to you, Im on methadone so any and all of your home remedies i would find interesting if you have the time. Skins1970
Had gastric bypass and drink much at one time but I did by tonic water today will start sipping about 8pm legs don't start until about 1or 2am get only 3to4hrs sleep after 5am I feel like im going to go crazy made appt with sleep Dr and psyc gotta get to bottom of this was on Fibro meds for 4yrs and stopped 2months ago made me feel like zombie during day just couldn't function
Hi again Marjorie. There is a new med on the market for this syndrome as REM said. I saw the commercials and don't remember the name. Make an appointment, and ask your doc to look in to it. Valium is my "drug of choice" for anxiety, restlessness, etc. Fortunately, I don't need them often. 60, 10mg will last me 3+ months. Maybe try this when you go to bed. Lay flat on your back, starting with your butt muscles, squeeze them as tight as you can and hold it for 10 seconds, SLOWLY release. Do that 5 times. Then work the same tightening and loosening (slowly) down the rest of your legs. Thighs, calves, feet, even your toes. When you get to your toes, reverse the order until you reach your butt again. Remember to hold each area for 10 secs. and do each part 5 times.
Have you tried heating pads wrapped around your calves? Maybe you can ask husband to give a deep, warm oiled, leg massage starting at the thigh and work his way down (no stopping along the way now) wink wink... and end with a good foot massage. You really need to get some rest... please talk with your doc and maybe give valium a try? Good luck on getting those legs to calm down.
Chris
I think the drug you folks may be thinking of is Lyrica, if it is I have tried it and it made more very sick and gave me suicidal thoughts. I liked the massage idea christineATU, sounds like fun too, ha ha ha. I may ask about adding or substituting the Valium never thought of those, I have tried the Klonopin for Psych issues and my body got to used of it and I was needing more so I got switched to Ativan which has helped some wit the anxiety issues but not the RLS or sleep. I may need that increased or changed too I don't know I see the psychiatrist the second week in May so I will see what she says. Thanks.
Yea I thought it was lyrica schedule 5 drug.But I wasnt sure so I held back I was going to look it up and I had to go so I finished when I got back.I was thinking it was lyrica was the new med.What kind of MD does she have when regular people know this and the MD doesnt.
Since your not taking those Valium my address is ... Just kidding
So happy you are back!!! I still can't get over it... ( :--)
I dont know what causes it but if you cant get comfort I read clonazepam (Klonopin) is a unlabled/Investigational use and I know 1 person that says it works great and clonazepam is used for panic attacks so you kill 2 birds with 1 stone,try it If it doesnt work ,I dont know what else there is although I THINK they were coming out with a drug made for restless Leg syndrome
Klonopin totally stop my RLS.
Hi marjie; Hey, I got it, I got it ! I finally , finally got it . The answer to the question."WHAT CAUSES RESTLESS LEG SYNDROME ? . . .. ... the long awaited answer??? is ... is?? ... "RESTLESS LEGS"! ... Hey am I wonderful , or WHAAATTT ! Go ahead , you can tell me how "wonderful and brilliant I am... and Marjie... if you need my help again , just let me know (30days in advance please) , as i'm in demand ! (:->) Sacosam, again & again.
Wise guy in every crowd. Thanks
They obviously have restless mouth syndrome
I had RLS for many years and I could not find any answers. The MD wanted to treat the RLS, but not try to find out what caused it. By accident, as I was having a gall bladder test, I feel asleep on the exam table. I woke myself up when I snored myself awake. The MD in the other room stated to the tech that I probably had sleep apnea. He didn't tell me afterwards, but luckily I overheard him. So, I made an appointment for a sleep study ( I had read up on sleep apnea and found out that it caused many of the problems that I had). Lo and behold, I had it. Once I was on CPAP therapy, my RLS disappeared, my heart palpations stopped, my blood pressure went down, I lost a little weight and I was no longer tired during the day. Well, being a pharmacist, I have filled many RX's for people with RLS since then. Every new patient that gets an Rx for RLS, I now ask a few questions to see if it's possible that they have sleep apnea.
I have suggested to at least 20 patients to ask their MD about sending them for a sleep study. Each were diagnosed with sleep apnea. Not all patients with RLS have apnea, but many with apnea have RLS. Being on CPAP changed my life. Please have it checked. Also, one can have sleep apnea and not be overweight. I am an example of this. I wasn't obese, but I may have been 5 or 10 lbs heavier than I needed to be.
Bob could you tell me exactly what restless leg syndrome is please?
norco at night helps, so does gabapentin. It can be an inherited condition;both my daughter and I have it
Related topics
requip, insomnia, restless legs syndrome
Further information
- Requip uses and safety info
- Requip prescribing info & package insert (for Health Professionals)
- Side effects of Requip (detailed)
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