Hi Merely,
Girl, did you touch on a subject that I feel I am a tiny bit of an expert in. I wrote about this a few weeks ago, but I would like to comment on this once again.
I was diagnosed with RLS a few years ago, after 20 or more years of painful legs and lots of sleepless nights. My husband sometimes will massage my legs when they are at their worst and the harder he massaged my legs the better it was. I am, and have been for a few years, on Mirapex (.5 in the a.m. and .5x2 in the p.m.). I take it at 6:00 in the morning and ~ 6:00 in the evening. However, if I forget the nighttime dose, or if I am 1-2 hours late, then I suffer. The medicine takes at least an hour to get into your system. BUT, it works. I tried other medicines and nothing works better than Mirapex. I'm not trying to sell this medicine, but to educate others with RLS or possible RLS that this medicine works for me and may work for others.
Anyway, I am in limbo with possible to probable MS. And I have to wonder if my RLS is a symptom of MS since I was a teenage. I appreciate your research on the link between RLS and MS and I will look further into this also. Smiling, Linda
Hi Linda!
Mirapex...okay...I will look into that.
I think I have jinxed myself...ever since writing this article I have been feeling my restless legs at night. It is just so annoying.
I need to catch up with reading everyone's posts...I know I am missing a lot.
Thank you very much for contributing to our discussion!
Good morning from Israel 
,
Me, you really hit on a sore spot for me. I remember having sleep problems from about age 7. I had this twitchiness in my BACK and legs that made it hard for me to get to sleep.
I was dx with MS + FMS in 10/98. One of the first complaints to my neuro was that I hadn't had a normal night's sleep in over 6 years because of twitchy legs and toes. He immediately gave me meds to help deal with that and said that without sleep my body and mind couldn't deal with my sx (extreme pain 24/7, early brain fog, anxiety attacks).
As time moved on I started having periodic attacks of twitch in my back, arms and legs that exhausted me and left me frustrated and screaming. I still get them once in a while, but since I started Lyrica 1 1/2 yrs ago it's been significantly less. My toes still work overtime 
.
RLS became R BODY S for me. When it happens, it's one of my worst sx. I wouldn't wish it on anyone.
Feel good 
and sleep well!
Maris
Oh I am so sorry...
Anything that keeps you from sleeping is horrible. So tell us more about Lyrica...this helps you?
For a while there I was having muscle spasms in my sleep...it drove me insane. I feel for anyone who has symptoms waking them up at night.
You will have to tell us more about your life in Israel sometime. It is so great to have MS friends from around the world. Some time we will have to compare health care systems.
Thanks so much for stopping by to tell us your experience.
I started having sensations of needing to stretch my legs or exercise. A month later I had optic neruitis. I was diagnosed with MS after all of the MRIs showed lesions. The need to stretch continued to get more often. My leg started jerking so much at night that it kept my husband awake, as well as myself. The doctor prescribed Mirapex. It has alleviated the symptoms. My only concern is that over a period of 5 years, I have gone from one to 3 or 4 Mirapex tablets a day.
I have had RLS since I was a teenager. My pediatrician called it leg ache. She would have me elivate my feet and take two asprin. This usually worked. You are right streching does seem to help. It is not unusual for me to stand from 9pm till bedtime. I was diagnosed with MS in 2002. I have had RLS since the 1970's.
I'm not sure how to describe the feelings. I feel like I want to stetch, but the more I stetch the more painful my legs get. My mom also had the same problem. I asked my current doctor and she said it was definately RLS. The more exercise I get during the day, the less of a problem I have at bedtime. I am currently taking clonezpam for it. This definately helps. I have the same problems in my arms as I do in my legs. Hope this helps.
I'm not sure yet if I have MS, the doctor is still working on that, he does know that I have an immune diffenancy. My family doctor GP did say that I have RLS some time ago maybe 5 years ago or so. As a child my legs did hurt, as far as I remember the doctor never gave my mother a reason except growing pains.
YES, I have it,started about 4 years ago,before I even thought of this,4:00 am is when it usually stops,then I can sleep, the Avonex does help about 3 days of the week,then when I get close to my shot it starts again.
My feet/calfs (right side worse) are solid all the time,when I spasm they jump.So if I get to sleep I wake right up.There are drugs to relax me enough,but you can't walk on them.
It has been almost 8 years since I have had a decent night of sleep (decent) meaning2 to 3 hours or better.
Every evening whether im sitting in my recliner or laying in bed my legs will just jerk or twitch usually starts off twitching sometimes it feels like it is coming from my knees sometimes my ankles. There are times when I just wish I could cut my legs off so I can go to sleep, I was so fed up with it that one night I asked my son for a couple of tokes of his pot because I know it relaxes him well guess what I was able to go to sleep in like 15 minutes of smoking that stuff so I tried it a few more times and it worked but quite doing it because of my job as a Supervisor and sometimes random testing.I have no idea what I have as to MS or RLS because I dont go to doctors.
I have had restless legs for as long as I can remember. I would spend most nights kicking my legs until I finally fell asleep. When talking to one of my clients, she described having exactly what I had been experiencing. I was referred to a sleep clinic and low and behold, the results came back that all these years I have had RLS. I was given Clonazapam and Leva-dopa and it helped almost immediately. Meds don't work as well now and I am also experiencing similar issues in my arms. No wonder it takes so long to get a diagnosis of MS if you have been having symptoms from such an early age but, certainly when I was a kid, no one would have associated my leg quicking to MS. I was just told to stop. Like you can turn it off!!
As with the diagnosis of MS, I was relieved that I wasn't going crazy, there really is a name to the symptoms. During my sleep study, I never did reach the REM stage of sleep(most restorative part of sleep) and I also at one kicked my legs 61 times in an hour!!
Hi. Just happened to be passing through these comments. I don't have MS, but I do have RLS. I've had it since I was a child, but didn't know what it was until my eary thirties. I too was initially prescribed Clonazepam and it worked well for a time. Unfortunately, one's body will slowly build up a tolerance for this type of medication (I believe it's a benoidiazepine) requiring more and more pills to get the same effect. Several years ago I switched to Mirapex and have much happier. I still have nights where I don't sleep well, but your body doesn't develop a tolerance for it.
Thanks for your response. I too find clonazepam doesn't work well. I'm still on original dose of 1.5 mg/night. With the diaqgnosis of MS and starting meds to hopefully slow the progress of the disease, meds for pain related to the nerves, antidepressants, vitamin supplements & omegas. I hadn't talked to my doctor about something else for RLS. I have heard the drug Mirapax mentioned a number of times. I am going to see if available in Canada. The clonazapam must help some as if I forget to take it, usually because I've gone to bed late and, don't want to end up sleeping half the day, the RLS begins and it takes along time to get some sleep.
Do you have family that also has RLS?
SherryO
Yes, RLS runs in the family although I seem to have a much more aggresive version than others. If I don't take Mirapex, I will almost assuredly be up half the night.
The clonazepam may not be working well at the dosage you are taking because you've developed a tolerance. I am trying to remember how much I was taking when I stopped...I think it was 0.75mg...so if you are at 1.5mg that's a sizeable dose. I recall my neurologist telling me a story about seeing a new patient who had been under the care of another physican. The patient was take 9mg of clonazepam a day and was like a zombie. Needless to say, my neurologist pulled him off the drug.
You might consider addressing the RLS with another medication. Also, note, that clonazepam is a physically addicting drug so you have to ween yourself off of it litte-by-little to avoid withdrawl symptoms. When I went off it, even with the weening, I experienced twitching in my legs. If given the choice to use it again, I'd stay away.
Hi all,
I had RLS for about 6 years prior to my dx with MS + FMS. When I got together with my neuro for the first time I told him that I hadn't had a normal night's sleep in all that time. The immediate actions we had to do were the 4 days of drip-Solumedrol, easing my pain, and getting me to sleep.
I was happy about that. I was really exhausted. We started on all kinds of treatments for my sx and 2 1/2 months later I started on Copaxone.
The rest of the story in unnecessary now, but that wasn't the end of my RLS. Over the years I had to increase meds to minimize it. Then I started getting attacks of RLS, but in my arms, legs, back. I think that was worse than attacks of MSHug and TN. They really drove me close to ending it ALL 
! Somehow those attacks also became much less frequent. Now my twitchy-toes drive my DH crazy when we're relaxing on the couch.
I think RLS is one of the most frustrating, agrivating, infuriating sx that we can get.
Good luck and feel good.
Soothing hugs 
,
Maris
Hi! I am 32 and have been diagnosed with RRMS from the past 11 years. As a child, I can remember having, what Mom called, "growing pains." But now, after reading through the information on this site, I have to wonder.
I have had severe RLS for many years now. I am also on Mirapex (my "sleep saver"), but also continue to jolt and move legs throughout the night, according to my husband.
Also, after reading this last post, I also wonder how much of it we can control. If I get into bed, without having any symptoms of restless legs, and then remember I forgot to take my medicine, my legs start moving almost instantly. Does anyone else have this problem? It seems as though, if our brains want to start moving our legs, why can't our brains stop them from moving?
I usually read information on the Internet about MS and other conditions, but never post anything. So this time, I thought I might and see if anyone else experiences the same thing. Just extremely perplexing and annoying to me.
Thanks for all of the informaton posted on this site!
I was diagnosed with SPMS in 1996 with lesions in brain and spinal cord on an MRI. Since then, I've slowly developed moderate to severe leg spasms starting in my left leg, and now in my right. It feels like electric shocks going down my legs to my heel, then causing my whole leg to tighten up. I'm on baclofen and gabapentin, but still have the spasms. I can't have a spinal MRI because I can't lay still on the MRI table for 3 hours because of lower back pain and legs jerking uncontrolably. After reading these comments, I will definitely ask my neurologist about mirapex, lyrica and a couple of the dopamine agonists because I just get an average of 3-4 hours of sleep a night and almost none of that is rem sleep. I had an MS relapse or episode about a month ago and my leg spasms have seemed to have gotten worse since then, Have got to address this problem because without rest, my MS will only get harder to live with. Any suggestions are certainly appreciated. God bless...Bob from Texas.
Hi Bob
Just a quick response...I am now using Baclofen after dinner and it has helped me tremendously. Also stretching can help.
Ask your doctor for guidance as to what medication options are right for you. Hope you find something to help...it is an awful feeling when you are trying to get to sleep.
hi name is tracey new to the sight have been in chronic pain for a couple of yrs but it is at a new level but we can talk about that someday rt now im being tested for ms and some nerve diseases. they put me on zanaflex a couple of days ago shocked how well it is working but i also take soma and narcotics plus about 12 other pills well im glad i found this website . unless people are in are shoes they just do not get it. well i will come bac in a few have to feed the big kids. thanks for listening. Tracey.
Hello Tracey. My first symptoms started in 1990 with dizziness, extreme double vision, nausea, black-out spells and slurred speech. All this came in cycles every 5 minutes and lasted for 15 seconds at a time. This went on for about a year. I was mis-diagnosed as having a viral inner-ear infection. In 1994, I noticed I would drag my left leg a little at first, then gradually it got worse. I finally saw an MS research neurologist here in Houston, who diagnosed through an MRI that I have secondary progressive MS. Am still trying to work out this leg spasm thing. Have cut-out caffeine and will ask doctor about other aids to get ahold of the leg problem. It would be nice to sleep through the night again. Hang in there and don't quit until you get a diagnosis. Everyone with MS is at a different place with their symptoms, but all of us can learn and get understanding and support from each other. God bless....Bob
Hello, I was diagnosed with MS 13 years ago and probably have RLS also. I had problems to fall asleep sometimes, but now i have a lot of problems during the day. At the beginning it was sometimes, later few times per week and now a few times per day which is very annoying. I am tired but i cant sit,i have to walk because legs are restless. i remember when i was small i have this feeling of restless legs sometimes. I will try some mediacation which you advice here, thanks for this article.
Having been an extremely sickly child I would lay in bed and cry over my aching legs as well as headaches my family told me I was too young to have so was told "you don't have a headache!"...and to be quiet in not such a nice way and the pains in my limbs were those of growing pains. These growing pains that I never grew out of, but only steadily increased as I have gotten older. If my mother knew I had something like this she would never have told me. She was a very selfish abusive woman who couldn't be bothered with a sick child that might need more attention or to put it plain and simple....cost her money she could spend on a new dress for herself.
I have been sick for so long, been branded with lupus and RA that now is negative so the doctors in the new state I am living in are negating my having it as well. They branded me with fibro, which only has half the symptoms I am feeling. I have not been able to empty my bladder fully in decades, my limbs go numb and tingly...legs so numb I fall on the floor. Now my memory is going, some days when the phone rings I know that it would not be possible to put a full sentence together so I wait for it to subside (sometimes a week) to call the people back. Thats if I can remember everyone I need to call back which is unlikely until a month later. I have been sleeping now 18 hours a day.....if I stand for an hour or two, after I sit down I get what feels like a charlie horse in my whole foot and ankle that leaves me screaming, the same sometimes in my back after work (when I was still working). Limbs go numb constantly....repeat myself, cannot get simple words to my brain or if they do make the words leave my mouth. My red blood cells are running rampant, but they say this shouldnt cause me not to be able to work.....please help me. I don't know how much longer I can live like this. Its tiring when you feel like the md's don't believe you. After 8 months and many specialists I sent myself to my internist finally has sent me to a neurologist!! I have been complaining of these things for the almost four years seeing him!! Now my workplace is threatening my job, since I have been laying on my back unconscious with out the wellwithall to do anything more and a doctor who let me lay there. Oh, the house I had owed eleven thousand on I have lost during this illness out of sheer forgettfulness and not enough money....now they will come after every cent I have soon. :"( No one would do this to themselves purposely!!!!!
I can remember having pains in my legs while growing up which my family doctor called "growing pains". Well, at the age of 40 I was diagnosed with multiple sclerosis. I chose not to take any medication. I have had at least three exacerbations and now at age 54 I have chronic back pain. I have been going to a chiropractic neurologist every six weeks for the past 11 years. I was getting relief to an extent, but now find I have horrible burning pain in the calves of my legs, especially upon waking in the morning. It pretty much lasts throughout the day and I am really starting to get sick of it. The back pain and calf pain is affecting my sleep. I have to get up and urinate at least three times during the night. At least I am not incontinent - yet! I think these exacerbations came on due to the extremely hot summer we had this year. I am trying to get more exercise as well as water therapy, and take vitamins. If this doesn't help soon, I will have to go back to a neurologist for medication.
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I didn't have any problem with RLS as a kid, but I have had a couple of episodes that sounds like RLS recently. About 1/2 hour after going to bed I had the feeling of something sharp poking me in the shin. It felt like a staple or something was in the bedsheets, kind of a cross between a pain and a real bad itch. It made my whole leg jump and twitch like crazy. I had two episodes that night and another about a week later. Nothing since.
I doubt there's a connection, but I had a lot of leg pain as a kid. I went through a huge growth spurt and I think the pain was related to that. I was 5'-2" when I was 10 years old, 6' when I was 12 years, and 6'-2" when I was 14. Looking back, I think I may have had some early signs of neurological problems around the age of 13 or 14.
Wow...that was some growth spurt! My son who is 14 is growing like that...he is already over six foot tall. When do kids stop growing anyways?
I think we all have the weird leg things...just hard to tell what is causing what sometimes.
Thanks for your comment!
Merely Me,
Let me know if you find out when they stop growing! I was thinking of rationing the incredible amount of food teenage boys can consume in a day! They have the fridge door open before they even have their coats & book bags off! My boys are 14 & 16 and appear to be taking after their dad's family, even his sisters are close to 6 feet! Better that then my side of the family' the males avg. 5'5" to 5'9", most of the women barely made 5'. I was lucky, I made it to 5'2.5"! They both appear to be dealing with RLS but, at this point they fall asleep as soon as their heads hit the pillow and, sleep quite deeply. I can see their legs moving when I look in on them.
SherryO