restless legs syndrome

[Martha]

For as long as I can remember, I have had the symptoms of restless legs syndrome . Specifically:

1. an urge to move the limbs with or without sensations (for me, I do have sensations, best described as "icky.")
2. improvement with activity (get up and walk and it immediately goes away)
3. worsening at rest
4. worsening in the evening or night.

It makes it hard to go to sleep and I have to get up often to walk a bit. Or, I might stretch and rub my calves very vigorously for relief. I learned years ago that caffeine would make it impossible to sleep, so I lightly use caffeine only in the morning and only a bit. My iron levels tend towards the high end so it isn't an iron deficiency, which according to wikipedia is a somewhat common cause.


Anyway, I have never asked my current doctor about it, probably because I have lived with it my whole life. It was those dang commercials for Requip that made me realize what it is and that maybe there is a solution. But I also know that the restless leg commercials are a favorite target of people who criticize cures waiting for a disease.

So, does anyone else have this problem that makes it so hard to go to sleep at night? Have you ever tried any drugs for it?

 

[SecondCor521]

I used to have it at night, but it seems to have gone away in the past few years.

I never took any drugs for it. I was told by a doctor once to try quinine water for it, which is I think equivalent to ginger ale or soda water or something like that. It seemed to help.

2Cor521

 

[bssc]

My friend's sister had it to the point where she was going a little psychotic (she thought she was Jesus Christ) but the combination of drugs her doctor gave her allowed her to lead a normal life.

 

[Rich_by_the_Bay]

RLS is common, especially in women. It's consistent how difficult patients find it to describe the symptoms, but in essence they mention some vague kind of discomfort in the legs only at rest, immediately improved by moving around. Normally it's below the knees and both legs are involved, and it's not unusual to have it combined with jerking leg movements ofen while you (but not your bed-mate) are fast asleep. I usually don't get into a lot of fancy testing if the story is good, just check a few routine blood tests.

Usually you classify the symptoms as intermittent (don't require daily treatment), daily, or refractory. The usual medications do seem to be moderately effective but they involve changing your brain's dopamine levels, not a trivial thing. You have to adjust for side-effects, paradoxical worsening of symptoms, etc. Ropinirole, though, is pretty well tolerated and mild side effects usually go away after a couple of weeks. However, when similar drugs are used for Parkinson's Disease, they caused in a small percentage a bundle of impulsive behavior like gambling and other unmentionable activities.

Non-drug therapies like massage don't have any supporting evidence.

By the way, there have been reports of improvement with iron supplements, even when the blood tests for iron are normal.

This is a technical reference: Link

This is not technical: Link

Some feel that this is a disease which has received unusual amounts of direct-to-consumer advertising with mixed agendas. No doubt it's very bothersome to some, but mild, moderate, or almost minimal to others. So it's extra important to be sure that the treatment is proportional to the distress of the patient.

Oh... and "Requip" goes for over a buck a tablet and is given three times a day.

 

[retire@40]

Take a multi-vitamin every day and/or eat bananas (for the potassium)

 

[donheff]

A partner at my wife's firm took Permax (similar to Requip) for RLS. She wrote an article for Chicago Magazine about her experiences with the RLS drug treatments. No one bothered to mention that there is an uncommon but known side effect of gambling addiction. She happened to take a trip to Las Vegas while using the drugs and fell into a virtually instant gambling addiction (she never gambled previously). She burned through her entire retirement savings before she learned of the drug side effect. When she quit the drug the cravings disappeared. It is a scary story - worth a read.

 

[Martha]

Take a multi-vitamin every day and/or eat bananas (for the potassium)

I do. No difference.

 

[Martha]

A partner at my wife's firm took Permax (similar to Requip) for RLS. She wrote an article for Chicago Magazine about her experiences with the RLS drug treatments. No one bothered to mention that there is an uncommon but known side effect of gambling addiction. She happened to take a trip to Las Vegas while using the drugs and fell into a virtually instant gambling addiction (she never gambled previously). She burned through her entire retirement savings before she learned of the drug side effect. When she quit the drug the cravings disappeared. It is a scary story - worth a read.

Very strange. So far, I have decided to live with it. But I do have fantasies of being able to just lie down in bed and go to sleep.

 

[donheff]

Very strange. So far, I have decided to live with it. But I do have fantasies of being able to just lie down in bed and go to sleep.

If I remember correctly, the drugs worked for RLS and the side effect is rare. So it may be worth a try -- just watch out for weird side effects. Forewarned is forearmed.

 

[ziggy29]

My wife had it pretty badly for a couple of years. Her doctor had her on Mirapex for it which seemed to work reasonably well with no significant side effects, but eventually she decided to cut the dosage slowly, again and again, until she realized she just didn't seem to have the problem much at all any more.

 

[Martha]

RLS is common, especially in women. It's consistent how difficult patients find it to describe the symptoms, but in essence they mention some vague kind of discomfort in the legs only at rest, immediately improved by moving around. Normally it's below the knees and both legs are involved, and it's not unusual to have it combined with jerking leg movements ofen while you (but not your bed-mate) are fast asleep. I usually don't get into a lot of fancy testing if the story is good, just check a few routine blood tests.

Usually you classify the symptoms as intermittent (don't require daily treatment), daily, or refractory. The usual medications do seem to be moderately effective but they involve changing your brain's dopamine levels, not a trivial thing. You have to adjust for side-effects, paradoxical worsening of symptoms, etc. Ropinirole, though, is pretty well tolerated and mild side effects usually go away after a couple of weeks. However, when similar drugs are used for Parkinson's Disease, they caused in a small percentage a bundle of impulsive behavior like gambling and other unmentionable activities.

Non-drug therapies like massage don't have any supporting evidence.

By the way, there have been reports of improvement with iron supplements, even when the blood tests for iron are normal.

This is a technical reference: Link

This is not technical: Link

Some feel that this is a disease which has received unusual amounts of direct-to-consumer advertising with mixed agendas. No doubt it's very bothersome to some, but mild, moderate, or almost minimal to others. So it's extra important to be sure that the treatment is proportional to the distress of the patient.

Oh... and "Requip" goes for over a buck a tablet and is given three times a day.

Sounds like no perfect solution. I do have the twitching/kicking thing going on as well. There are maybe less than 5 nights a year when I don't have a problem, but some nights are far worse than other nights. But the last thing I need is something that might cause me to behave impulsively.

I'll mull things over and next appointment I probably will bring it up with my doctor.

 

[ziggy29]

Oh, and I should have added that in my wife's case, she thinks the reduction in symptoms came with increased use of iron supplements. But she's had iron deficiency problems in the past and you say yours is fine, so that may not be much help here. Just another data point.

 

[Dude]

The usual medications do seem to be moderately effective but they involve changing your brain's dopamine levels, not a trivial thing.

Martha - how much regular aerobic exercise of moderate or high intensity do you do? Dopamine is one of your brain's neurotransmitters, and there is much evidence out there that aerobic exercise can optimize these neurotransmitters in the brain the same or better than medications. I'm reading "SPARK, The revolutionary New Science of Exercise and the Brain" by John J. Ratey, MD, which has me convinced (along with reading "Younger Next Year") that many of these brain related problems cropping up these days are due to sedentary lifestyles. If you're not doing vigorous aerobic exercise the majority of the days of the week you might want to try ramping that up first for 3 months or so before resorting to medication. Of course, always ask your doctor first

 

[Martha]

Dude, not as much as I used to and I know I need to do more. Oddly, the more I exercise the worse it is.

 

[Dude]

You might also want to ask your doctor about taking a Magnesium supplement if you're not eating a Magnesium rich diet. Magnesium has a natural calming effect on the nervous system. I've taken Cardiovascular Research Ltd. brand Magnesium Taurate in the past, you can get it at Vitamin Shoppe. Some believe that some movement or tic disorders, e.g. Tourette's Syndrome, is due to Magnesium deficiency. Maybe try fish oil also.

 

[donheff]

You might also want to ask your doctor about taking a Magnesium supplement if you're not eating a Magnesium rich diet. Magnesium has a natural calming effect on the nervous system. I've taken Cardiovascular Research Ltd. brand Magnesium Taurate in the past, you can get it at Vitamin Shoppe. Some believe that some movement or tic disorders, e.g. Tourette's Syndrome, is due to Magnesium deficiency. Maybe try fish oil also.

I had a minor case of RLS -- I would wake up occasionally with a creepy feeling in my leg which would make me want to stretch it. I have been taking magnesium for a couple of years and haven't noticed any RLS symptoms since. But I have also kicked up my aerobic excercise a lot (biking) so that may be involved per Dude's post.

 

[citrine]

There are a lot of things you can do that don't involve taking drugs....you can do stretching, Yoga, massage (we do that at the spa), reflexology, reiki, accupuncture, or accupressure.
Depends on how open minded you are.

 

[REWahoo]

Martha, put down that damn whip, take off those spike-heeled boots and see if things don't improve...

 

[Martha]

Interesting points. Maybe the spike heels have to go.

 

[tashon]

Restless Legs

Hi Martha and all,
I too have restless leg syndrome. Never knew what it was and spent many sleepless nights. It is so horrible when you're walking the floor while husband snores away. After seeing the commercials I realized I could actually talk to my doctor about this. YAY!!!! Anyway, she prescribed Mirapex and I have had fewer sleepless nights since. It does bother me occasionally (like last night ) but most nights I can sleep....FINALLY!!!!! I have have no side effects from using .75 mg.
If you are looking for a more natural approach I hear low levels of magnesium can also cause restless legs. Also, about the exercise, my doctor said that exercise can actually make restless legs syndrome worse.

 

[Rich_by_the_Bay]

You might also want to ask your doctor about taking a Magnesium supplement if you're not eating a Magnesium rich diet. Magnesium has a natural calming effect on the nervous system. I've taken Cardiovascular Research Ltd. brand Magnesium Taurate in the past, you can get it at Vitamin Shoppe. Some believe that some movement or tic disorders, e.g. Tourette's Syndrome, is due to Magnesium deficiency. Maybe try fish oil also.

Dude. I think you are confusing nocturnal leg cramps with restless legs.

 

[Martha]

Thanks tashon for checking in to give me your experience. Mine is the same. It is odd how exercise seems to make it worse. Definitely true for me.

I don't know about the magnesium. I take my multivitamin. I eat a lot of veggies, especially spinach, which is very rich in magnesium. But I'll talk to the doc about the pills like Ropinirole, and the supplements like iron or magnesium. I am feeling a bit less weird about learning about this because of a commercial. The problem is that it is difficult to describe, but now it seems like people know what you are talking about. Edit: I see Rich has said that magnesium might be for leg cramps, which this is not.

 

[tashon]

I read the magnesium thing on the RLS website. The woman at Vitamin World also told me they sell it alot to people for RLS. I am in the middle of taking it but haven't reduced the Mirapex yet as it takes the magnesium a month or 2 to kick in. Will let you know how it goes.

 

[barker]

One thing I've read to improve blood circulation in your legs is alpha lipoic acid. I've started taking that and after a week or two, I noticed less tingly feeling in my legs when I sleep. Maybe it would help RLS too.

 

[donheff]

Dude. I think you are confusing nocturnal leg cramps with restless legs.

I used to have those too - worse than RLS. Maybe the magnesium is a miracle cure.