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I have suffered from RLS for the past several years
and even though I am an RN I didn’t even know there was a name to the “creepy
crawly” sensations I felt in my legs that would keep me awake for hours! I
stumbled onto a website to discover that I was not alone.
For me, I would describe the sensations as “little bugs crawling inside my legs” or “someone tickling my bones.” It would absolutely drive me nuts and I would thrash around in bed even on Ambien, get up, walk or run on the treadmill, go back to bed and thrash around some more, get up again, read, walk around the house, go back to bed, take more Ambien, but at times it was so bad that I would be awake all night long until my kids got up for school.
It is like torture when you can’t sleep, yet you are exhausted beyond reason. In fact, I have heard that captors have tortured prisoners or weakened them during an interrogation process through the means of sleep deprivation, because they know how severely it compromises a person. I think I prefer the pain of fibromyalgia to RLS because at least I can go to sleep with pain most of the time.
The worst times for me with RLS were during a 1 month period in 2003 when I stopped my narcotic pain medication abruptly. I had been on a strong narcotic patch called Fentanyl that is absorbed into the bloodstream through the skin for several months for my fibromyalgia. I did not know that RLS symptoms would increase in severity as a result of narcotic withdrawal.
had frequent and severe symptoms of RLS, much more than I had had before (and
even then I had already replaced my sheets twice in a 6-month period due to
tearing holes in them with my feet because of all the thrashing around!)
Twice during this withdrawal period I was awake for almost 48 hours as a
result of RLS symptoms and had to be finally taken to the ER and knocked out
with morphine to sleep. Sleep deprivation will make you crazy!
Thankfully, I had a polysomnography around this time, which showed the RLS and another sleep disorder commonly associated with fibromyalgia known as alpha-delta sleep anomaly, or alpha-intrusion, and the neurologist put me on some additional medications for this disorder as well as an anti-Parkinson's medication known as Mirapex, which is also used to treat symptoms of RLS in some people. I was so exhausted from not getting much sleep due to the RLS, so I was relieved to finally try the Mirapex.
It is funny now, but the first week of taking the medication, it often causes insomnia as you adjust to the medication, but I didn’t realize that until a few days later. I just wondered why I was wide awake with no symptoms of RLS until 5 am every night. After about a week, this resolved, and I finally got some sleep and got rid of the dark circles under my eyes. Good thing, because after all this resolved (finally) I was due to go on a 2-week choir tour to England and Scotland that had been planned for 2 years, and I was supposed to be a vocal and flute soloist. It had looked like I was going to have to back out of it at the last minute, but it all worked out in the end and we had a great tour.
I have been on the Mirapex now for a year, and it works very well for me. When I don’t take it, my RLS symptoms do recur, even with Ambien and my other sleep medications. I know this is quite a lengthy e-mail, but it was quite an ordeal for me last summer with this problem.
Can you tell me if Trazadone makes restless legs worse? Two of my doctors have recommended for sleep instead of Ambien. Can it be taken safely with Mirapex? Your response and help is appreciated.
I have received incredible relief from Mirapex (.25 mg) for RLS over the past six months. However, I am concerned about long term use and certain side effects. I sometimes wonder if the cure is worth it. I have tried to reduce the dosage but .25 mg about two hours before bedtime provides the relief from RLS that I need. But I frequently suffer insomnia and heartburn.
I also have concern about what this drug may be doing to my system. I don't know of a way to describe it, but most nights I get this strange feeling that there is something wrong with my body, kind of like a rush of adrenaline. It soon subsides, but it concerns me what this drug may be doing to me (perhaps I am worried over nothing). Can this drug cause heart palpations or other cardiac problems?
My other concern is what this drug is doing to my whole thought process. I have noticed that I am somewhat hesitant in my speaking as though I am searching for my next thought ( that may be from a lack of sleep). I tried to see if I could go a night or two without the drug and I had the most terrifying nightmares imaginable. It was so bad I did not want to go back to sleep.
Am I simply paranoid for nothing, or is Mirapex a mind altering and body chemistry changing drug I should be concerned about?
Anyway, my doctor was suggesting some Parkinson's meds but at the same time him and I both thought that since I didn't have symptoms too often that taking something like a Parkinson's med wouldn't be practical. However, when I do have symptoms they are very severe and I lose sleep over them which is an especially hard thing to deal with right now that I am going to the University and have early mornings. Not to mention most of us know how unbearable it can get.
Essentially I am looking for something quick, cheap and easy to get or do to relieve the symptoms. I can't have caffeine as it really flares up the symptoms as opposed to helping them. I am willing to try something natural but not too expensive.
Do you know of other anti-seizure drugs I can try? The Neurontin I take definitely makes my mouth hurt. I tried Keppra last night. My mouth pain was almost gone (it was nice!) but the Keppra made my stomach hurt and then didn't stop my legs, so had to take some Neurontin for that.
Today feel tired and
out of it! Neurontin works for me, but for over a year has caused my upper
palate to feel very hot and uncomfortable. I know they use it for pain, but
this is some kind of weird reaction! So if you know of any others I could
I have painted candles for the last 2 1/2 years. I spent 4-8 hours a day right down over the candles. About 6 months ago I started having severe RLS. I've found cases of people who spend a lot of time around lighted candles having problems with their nervous systems. Could my being so close to the candles and breathing the scents cause my problem?
I became suspicious when, after being away from the
candles for several days, I became ill after painting for an hour. The
next day I became ill after painting for only half an hour. My
neurologist just shrugged his shoulders when I mentioned it to him. I
would very much like an answer from you.
I'm now on Sinemet and am experiencing augmentation. I have tried Mirapex
but have terrible side affects. Thanks, Medical Reply
I'm now on Sinemet and am experiencing augmentation. I have tried Mirapex but have terrible side affects.
I have been suffering with my first bout of RLS for about the past 3-4 weeks. You responded very quickly to a message I sent a few weeks ago, and I wanted to thank you.
I have a few new questions. My doctor prescribed clonazepam for the insomnia and anxiety I am feeling. Sometimes it works and some nights it doesn't. Will I ever have days where I will not feel RLS? Does this come and go? Also, I have been having sensations in my abdomen and possible my lips and mouth area. What I am feeling in my face could be tension, I am not sure.
What do you think? As you can tell, I am very anxious about this, and any information you can provide would be appreciated.
I have RLS. However my situation seems a little different than other people I have heard. I have a period of a week-a month where I have headaches and RLS almost everyday, and then I go through a period of a couple weeks-1 month where I have no headaches or RLS, then it is back again. I feel there must be a connection between the two.
I thought perhaps my period, but the symptoms occur at different intervals and at different times in my cycle. I found one site liking the two to depression, but I am not depressed. I would love to hear any possible causes you could give me. The symptomatic periods are driving me crazy!
I recently went in for out patient surgery and was given 2 drugs that caused a reaction in me so badly that the surgery could not be performed. The drugs were Reglan and Propofol. Last year I was given these drugs for reconstructive breast surgery after a lumpectomy and had no incident. This time while going in for some more cosmetic surgery I began what the doctor described as a dystonic reaction along with myoclonus.
My blood pressure rose and I got a fever and began jerking. The doctors called off the surgery and are going to review what happened. Obviously I am traumatized and scared to death of anesthesia. Does it have anything to do with my RLS? I took my Permax at midnight and never had trouble before.
I had RLS for 3 years, and it progressively worsened until it affected my legs as wells as my arms. It was torture. Then I heard iron might help (ferritin at 30 even with supplements) and took iron with Vitamin c and B complex, on an empty stomach - (important). It worked immediately, that same night. When I stop taking the supplements, it comes back.
The question I have is: why do I need iron? I eat plenty of iron-rich foods.
I heard that mercury poisoning from dental amalgams can deplete iron in your body and brain, (as well as cause RLS). Do you believe there may be a connection?
It worked. Up until two months ago I was relived of all symptoms, particularly at night. Recently the RLS has started to return about 8 PM. It often gets worse during the night and can be relieved only with larger doses of Clonazepam, up to 2 mg. My neurologist feels that a gradual switch to Cabaser may be the answer. It is supposed to extend the daily cycle of the protagonist, thereby minimizing the dependency on Clonazepam. Is there any research of experience with the use of Cabaser for RLS?
B. Katz. Tel Aviv, Israel
It was hard growing up with this disease, my parents thought I was lazy be cause I would sleep in late. I tried to explain to them about it but had no idea what I was talking about. They finally took me to a doctor, and the doctor said I was healthy and that I just want to avoid school.
The last 7 years I just gave up , I just could not compete with the working world any more, with just a few hour's sleep. Lately I have had suicidal thought's, I just can't take this any more, night after night it's the same old thing. I suffer to much and my doctor takes it lightly.
Is research showing effectiveness of Gabitril for Restless Leg Syndrome?
First of all, I would like to thanks all of you creators of this web
It is a very informative site.
I suffer from OCD (obsessive compulsive disorder) and RLS especially or exclusively on OCD medications. I've tried a lots of SSRI's. They help for OCD but dramatically increase RLS to severe RLS. Is it safe to use Mirapex together with an SSRI ? My doctor says that Mirapex could worsen OCD .
In my case RLS is primarily cause by SSRI, without medications I can't notice any RLS symptoms (maybe some paresthesia in the evening (but not very problematic). I'm 25 now and I have some concerns about Mirapex and long terms uses, tolerability and efficacy. Does Mirapex effects decrease over time or create tolerance ?
Taking Mirapex because of SSRI sucks. What do you think I should do ?
On to Neurontin. I tried it for a week and it did nothing. I got some sleep because I was still taking some Mirapex, though was gradually reducing the amount. Now I'm onto Requip. I'm in hell again. I have increased it slowly as the Mirapex was slowly decreased. Each time it was increased, I slept less as the RLS became more constant. Two days ago, I finished the last dose of Mirapex and increased the Requip and since that time I've had constant RLS day and night.
Last night, for the first time, I had RLS in my arm. I started to cry. I want to stop ALL dopaminergic drugs for a few weeks and see if the augmentation reduces. I want to see if the weird side effects stop. Should I try Temazepam? I tried to look at your treatment page and see which of the benzodiazepines would work best. But what about a drug holiday--you said every two weeks. I don't know what to replace it with. Oh, but maybe it won't work as I have symptoms starting in the late afternoon.
I don't know what to do. Thank you so much for this site. At midnight, having been up 50 or more hours and looking to be up several more, you are the only ray of hope I have; what you say will help me when I go to my doctor.
I have had restless legs on and off for many years. When I had a couple of surgeries the doctors were going to give me a local anesthetic instead of a general one and my legs about jumped off the table. Needless to say, they put me all the way under. I went through a period of three months of not sleeping and with great hesitation took temazepam.
This worked for the legs and insomnia. I have gone off and on it. I have recently started to cut down from 15 mg. At night to 8 or 10 (I open the capsule and pour out half of a half of a 30 mg capsule). My legs go crazy all night. I have to keep myself from running and taking the whole capsule. Is there something I could take while I am trying to cut this completely out.
Vicodin works great but I realize it is also addictive. I am not an addictive person- I just need my sleep. Is temazepam as addictive as Klonopin? Any information would be very much appreciated.
Thank you sincerely,
Linda, San Diego
This is my first night and I can't sleep and decided to look up on the internet when I found your site. Is this a medication that has worked for some in the past? This is not a constant problem for me, just maybe one of two days a week, sometimes more. It happens as often during the day as at night. Just wanted your take on this.
Most RLS patients find that antidepressant medications worsen RLS but as you can see there is great variation. Usually, once RLS starts it tends to stay (there are exceptions) and generally get worse with time.
I have read all of the forums and, though my doctor is very helpful, I gather she doesn't have a lot of experience with treating RLS. I gave her a copy of the Mayo Clinic Algorithm that came in the recent RLS newsletter and we decided I should move from Sinemet to Mirapex.
I've tried it for two nights and find that, while it seems to almost completely ease my legs night AND day, I can't sleep. I just lie very comfortably in a quasi state all night checking the clock every two hours. Last pm after two hours lying there I added an Excedrin pm and it might have helped since I slept some but I'm not sure since I was so tired anyways.
I see that the "norm" is .5 mg which would be four of my .125 mg pills, but do they take all four at once two hours before bed? And will increasing the dosage help or hinder the sleeplessness? Or should I just try it? I took one pill of .125 mg the first night and tried two the second night. Tonight will be my third night. I'd love to stay on them since they help my legs but I need to get sleep.
Do some people take it in conjunction with a sleep aid and is that ok? I have some Sinemet left which used to really put me to sleep. I wonder if I could combine them or will the Sinemet bring back the jumpy legs the next day?
Barb Medical Reply
As a sufferer of RLS for most of my life ( I am 41 now) I can tell you that you're not alone. It is a very nerve racking disease. One thing that I have as of yet to see mentioned was the fact that there are several conditions that often go hand in hand with the restless leg syndrome or have similar symptoms. My father was diagnosed with a very bad case of peripheral neuropathy. He also had RLS. Many in our family also had the RLS symptoms. Seems that runs in families too.
No one really completely understands how RLS works and its cause so a good work up to exclude other causes is vital. Now I have been diagnosed with having peripheral neuropathy also, probably a genetically inherited type. CMT (Charcot Marie Tooth) is by far the largest type of inherited peripheral neuropathy. An electromyogram and an NCV (nerve conduction velocity) are the standard diagnostic test for the PN (peripheral neuropathy) and to rule this out as a cause before diagnosing RLS as the symptoms are very similar.
Do yourself a favor and read up on Charcot Marie Tooth disorder just to see if you have any of the characteristics of PN versus RLS. Both are very poorly understood at the present time by the medical community. Currently I am on Neurontin and Mirapex. Seems like to me they work very good together and just last night I forgot to take either of my medications and barley slept a wink.
To make a long story short, she's developing problems with the Ultram (tramadol). What can she alternate the other med she takes (I think its either Vicodin or OxyContin) with if she can no longer tolerate Ultram.
What has me concerned is that I have osteoporosis and my doctor prescribed Fosamax for me. When I took this, it was the worst week I've had in a long time as far as my RLS symptoms were concerned. Even though I am on medication for them, the crawling sensation was horrible, I was practically rolling around on the floor, I couldn't sleep, its as if my RLS medications just stopped working.
After the Fosamax got out of my system, everything was fine and back to normal. Have you ever heard of anything like this and is there any thing I can do. I'm really upset because there is severe osteoporosis in my family and I really need some kind of medication for it. I hope you can help.
Again, there is nothing there that is known to worsen RLS and furthermore, I have many RLS patients on Fosamax without any noticeable worsening of symptoms.
I have been taking Abilify, a schizophrenia drug, for my RLS and it works fabulously. It has some side effects like mild nausea and sleeplessness, but these go away within 24 hours. The best part is only one 5mg tablet works for 2-3 WEEKS! I can't tell you how fantastic this drug is.
Please post this on your site; a lot of doctors don't seem to know about its effectiveness for RLS, and it could help a lot of people.
I have had the symptoms of RLS for the past two weeks. I also believe I am in the beginning phases of menopause. What if any correlation is there and have you heard of other women with the same connection. I had taken Paxil for 5 years for postpartum migraines but have not been on any antidepressants for many years.
Does the use of antidepressants have a connection to causing RLS? Thank you. I am so glad I found this website I thought I was just going crazy.
She cannot sit still, her legs are always going, when we go on car rides she gets "antsy" she insists on stopping to get out and walk. She cannot sit for any extended length of time without complaining and at night she wants her legs rubbed. She really likes it when I squeeze her feet, really hard. It seems to be in her feet and shin area the most. Both legs. Sometimes it wakes her up.
While reading your entries I found a comment on Sept. 3, 2001 about a diet that helped her symptoms. At 11, I truly would prefer to go that route instead of medication. Would you be kind enough to tell me how to go about finding the triggers. I understand caffeine consumption. But what about other foods, like this potato and corn theory. Are there any particular foods shown to increase symptoms?
Thank you for any help,
My husband has had this for years. He didn't know it had a name until
about a year ago and was able to pass that information along to his
maternal grandmother who has suffered with RLS for a long time.
She walks her house at night...she refuses to leave and spend the
night away from home due to this. It has been this way with her for a
good 20 years or more now.
My husband is 36 and he sees how much this has affected his grandmother (his mother is deceased so he does not know if she had suffered as well) and worries that he will end up just as bad. He has been through muscle relaxers and many other spasm meds....now he has been sent to a neurologist. and they prescribed Mirapex, .25mg. He has to take about 2 every night to feel any results but he has been sleeping better....me too!
Connie N of NC
Anyway, is there a link between estrogen levels and RLS? I have never had this feeling before and I going a little crazy with these symptoms. My mother used to complain of "jumping legs".
I have had RLS most of my life and I am 77yrs old. It has been very bad the last 2 or 3 years. I found that my medication was causing some of it and I have been able to get it under control by being very careful of certain foods. Right now it mostly happens just after I go to bed and I can relieve it by using Sportscream or Theragesic and an ice pack on my feet.
My doctor gave me 50mgs of Zoloft a day a couple of months ago and that is the only medication I am on except for Fosamax. He wants me to stay on it because he thinks that is what is helping me. However I have had experience with food before and know what affects my RLS and what doesn't. Can you tell me if Zoloft actually helps RLS. I really don't think I need it.
Thank you for any information you can give me,
I have had RLS for years and its worsening. I didn't know what it was until I researched symptoms on the internet. I have it in my legs, arms back and neck. Its unbearable. I'm on a few different medications and am stopping the ones which worsen RLS. Can drugs like Nexium worsen RLS? I have an ulcer and if Aciphex (like Nexium) worsens RLS can you suggest anything else? I only would get it after taking an antihistamine or decongestant but now I have it almost all the time and during the day. I the legs is bad enough but when it effects arms and back and neck it is horrific.
My husband is disabled and I am his caretaker. I get no sleep at night and am exhausted during the day. Is there anything I can take other than the anti-seizure drugs? I am presently taking, Paxil, Tricor, Aciphex (recently and for just 6 weeks), Fosamax (have to for osteoporosis), vitamins (senior) , 81 mg. aspirin, and eye drops for glaucoma.
Please help if you can.
I have had what I believe to be RLS since I was a young child. Actually my sister and I both have it and as kids called it the leg wiggles. I have had episodes on and off and for different durations. The best description of how it feels is that I want to get up and wiggle, move as fast as I can, and try to run fast enough that I will run out of my skin. My most recent one started the day that I had back surgery (fusion) When I woke up from surgery, one of the nurses asked if I have had any problems with it. It has been almost three months and I am still having a difficult time with it.
I was on Sinemet and Xanax until today. My doctor took me off of the Sinemet, Lipitor. I have also been on a great deal of pain meds for the last three years, now pain free I am gradually going off of them. I have a friend that never had RLS until she had surgery, now is on meds for it. Any correlation of onset with surgery?
Also, does it run in families. Is this a sleep disorder? Brother also has sleep apnea. Does RLS start at such an early age?
Thanks so much,
I have had RLS for the past 8 years, although I did not know that it was a medical condition. My father, his brother, and my 2 adult sons 34 & 36 have it also. My dad used to call it the "jitters". I can't believe that my sons have developed it. They both thought that they had Parkinson's. I do not have middle of the night symptoms. My discomfort always came around 8 or 8:30pm while watching television, for about 3 days in a row and maybe once a month or two months.
I was able to control it by taking 2 aspirin and within 30 minutes it would be gone. This past summer my symptoms became more "intense" and at least 3-4 times a week. I was still able to control it with the aspirin. In the fall it became unmanageable and my internist put me on Sinemet 25/100 right before bed. I took it for 27 days with a huge increase in my symptoms.
I now had it everyday beginning at the same 8pm start, but it never stopped before I went to bed and the only way I could fall asleep was to take an over-the-counter sleep tablet (Tylenol Simply Sleep). I even have the symptoms slightly in the morning. I never seem to be able to relax.
I want to switch medications and cannot decide between asking for Requip or Mirapex. Which would be better for RLS symptoms that occur during awake time?
I am now taking Mirapex 1.0 mg/evening and Neurontin 1 300 mg capsule/evening. These seem to be working okay but earlier I was taking the Mirapex and Wellbutrin 50 mg/2 x day. That worked better for sleeping (I wake up several times each night) The combination of Mirapex and Neurontin works well for the neuropathy but I don't sleep as well.
Before I go to my doctor, I was wondering if it would be feasible to take all three or if this would not be a good idea. I'm not even sure if this is where I should be asking this question. Just wanted an idea before asking my doctor.
I have had RLS for a 5 years and am now 60. Originally a sleep study doctor (had trouble sleeping) put me on clonazepam .5 mg He took me up to 2.5 which was really a drugged state for me. Another sleep doctor said to go off that (fun) and put me on Mirapex 2 a night of .25 mg. Did not help RLS and leg pains so current general practitioner put me back on clonazepam. which I take 1 mg at night along with the Mirapex.
Does not seem to help much and sleep is getting worse. plus very tired and feeling drugged when I get up in the morning. Have a new doctor who says he has no experience with Mirapex and has no idea if there is an interaction but says to give it a try. been on both now for 2 months and sleep not great and no help with RLS..
I was born with a dislocated hip, and have always had leg issues because of it. When I was little I used to wake up screaming at night it hurt so bad. The doctor always attributed it to growing pains, but when it continued, I knew it wasn't. It mostly bothers me when I'm tired or late at night, or when it's cold and rainy.
Winter is usually the worst time. stretching my lag into weird positions often helps relieve pain, but other than that, I don't really do anything for it. sitting for long periods of time bothers me, especially if my legs don't quite reach the ground, or on stools. I haven't discussed this with my doctor yet, but my mom is making my an appointment.
I'm just happy to know that I wasn't going crazy all the times I told my parents it felt like something was crawling inside my legs. I think it's great that their are places like these where people can discuss symptoms and remedies.
The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.