RLS (Restless Leg Syndrome)

[SawyerBrown]

Does anybody else battle RLS?  And if so, would you be willing to share what helps and what hurts?

I know that I'm worse after sitting all day, such as when driving or when I used to attend a lot of meetings before I retired.  While you'd think soaking in a hot bath would relax things, I've found just the opposite to be true.  If anything, cold helps (I have a dedicated bag of frozen peas that I use.  We won't eat them since they've been thawed and re-frozen so many times ... :D).  I also have given up alcohol for all practical purposes, maybe a beer or glass of white wine for lunch once in a great while but nothing later in the day.  Red wine (which I love) and hard liquors are the worst, beer next, white wine not too bad.

While RLS started in my legs, it now manifests itself in my back.  Thought maybe after back surgery things would change, no such luck. 

Currently taking Gabapentin 2x daily, and a Pramipexole (Mirapex) 2-3 hours before bed.  Most days that seems to do the trick, but it usually makes me drowsy so I've got to be careful about driving.  I took Requip for a while but it really made me drowsy and seemed to get less effective over time.  Tried Neupro (patch) but it was totally ineffective. 

The only thing I can do if RLS kicks in when I lay down is to get up and walk until the drugs kick in.  Or I fall over from exhaustion ...

Trying to think if there's anything else ...  Well, I'll let others chime in as they would like.

[POC]

Have you tried ropinerole?

[red oaks lumber]

sawyer
i've done all the drugs you listed only in alot larger doses, they even had me on lyrica. that crap does nasty things to you :( nothing worked.. didn't even make me drowsy. 3 yrs ago my wife bought me an inversion table, let me tell you it has really relieeved the shooting pain and has given me more flexibility.

[thecfarm]

I was on that requip too. I tried to take it about 6 at night in hopes it would wear off by morning. I think a person could spend a small fortune on finding something that helps. Some nights are good some are not. keeps the wife awake too. You know the saying,If Mama ain't happy,no one is. I was on some sleeping pill. I forgot what it was. Could only get 30 days at a time. That worked good,but it was a bad one to be on any length of time.

[SPIKER]

I was on the gabapentine stuff but had a  bad reaction and almost lost my sight in one eye.   it is side effect not a common one but more so with high dose or extended dose...   had back surgery do to compressed disks and had 3 removed completely without much help in the pain or restless legs...

want to try inversion table tho but stomach dont seal up as it is figured everything would run back out I ate for the day.   least it dont run out the other end YET :x

M

[terry f]

   I don't like the head rush from the inversion table, but they work when things get to hurting so bad it doesn't matter. I take two low dose gabapentin before bed, and they put me out.

[sandhills]

My wife (a nurse) also suffers from RLS, but not every night, she says go old school, eat bananas, raw potatoes, and drink tonic water.  The tonic water has quinine, suppose to be an old remedy.  She also said amytriptylin (an anti-depressant) may also help without causing the drowsiness.  Word of caution I AM NOT a doctor  :D.

[Red Good]

Is anyone wearing compression stockings to help with this ? Red

[ellmoe]

   I am up tonight, "enjoying" a bout of RLS!

[SawyerBrown]

Have you tried ropinerole?

I have not tried ropinerole.  Success for you?  I'm trying a new doctor later this morning and I'll ask him about it.

My wife (a nurse) also suffers from RLS, but not every night, she says go old school, eat bananas, raw potatoes, and drink tonic water.  The tonic water has quinine, suppose to be an old remedy.

That's a new one on me!  Might be worth a try.

The other thing I forgot to ask is if anyone is also suffering from sleep apnea, and if they think it might be related.

I feel for you other guys who also "enjoy" RLS.  I can't remember the last time I was able to just take a nap in the afternoon.  Impossible!  One of life's little pleasures that some of us may never experience again.

[SawyerBrown]

Oh, forgot to ask about inversion table.  I know that's supposed to be really good for general back pain by de-compressing your spine, but you guys are also saying it helps with RLS? 

[LeeB]

I've got pretty severe sleep apnea and one of the things they asked me about when I did  my sleep study was if I had symptoms of RLS. I think there is some correlation between the two. I used to get it pretty regular, but can't recall having it lately. I've been on a c-pap machine at night for about a year now.

[thecfarm]

Sawyerbrown,have you had a sleep test done?

[Raider Bill]

Plus 4 on the inversion table!

Don't try to hang completely upside down at least at first. Start just past 90 and work your way to 180 or less. I hang at about a 130 - 140 degree angle or my knees hurt after. It fixes my RLS, sciatica and upper/middle back problems. It does work on my lower back but doesn't last.

I hang regularly sometimes 3 times a day for at least 8 minutes and no more than 12 minutes each time. I wish there was a button to invert the tv screen..

[MikeZ]

Well we certainly have quite the fan club here. I have tried ropineral(mirapex) along with everything else to no avail. Sawyer Brown I think you must be mirror image of myself. Nothing works but stand up or walk. I have severe RLS, Severe Sleep Apnea, Lumber section of back which all 5 are junk, torn rotator cuff (been fixed once, not doing that again till absolutey have to). Only thing satisfied with is knee replacement. Even Discectomy and fusion in neck gives me fits. Quess I'm just a severe person. I have flexed my leg muscles so hard at night trying to relieve RLS can't walk right for two days. Currenty take 3 600mg gabapentin, two tramadol 50 and 2-3 Norco 10 (mostly due to back and arthritis) plus all the other prescr. it takes. All the RLS drugs seemed to help at first but nothing later. Did the spinal decompression sessions,helped a lot for a year. Have done hours of internet researh but haven't found anything promising. Good luck to all.

[SawyerBrown]

Sawyerbrown,have you had a sleep test done?

Oh, yeah, and I'm using a CPAP as well.  Most nights that works wonders for staying asleep, once I get to sleep, and if I can keep it from leaking too badly, but doesn't seem to be having much impact on the RLS.  Maybe it would be worse without it, who knows?

MikeZ, could we have been separated at birth and not known it?  Although sounds like you have it worse than I do.  Thanks for the clarification on ropineral, it's the same as Mirapex which is the same as the generic pramipexole that seems to work best for me.  Good luck with getting some relief, we all know how miserable that can be.

Thanks again for the advice on the inversion table.  I'd thought about it anyway for general back pain, but if there's a chance it helps with RLS I'm willing to give it a shot.  Anybody have a favorite brand?

[SawyerBrown]

[Thanks for the clarification on ropineral, it's the same as Mirapex which is the same as the generic pramipexole that seems to work best for me.

Sorry, that's not right ... should have done my research before posting.  Ropinirol is the same as Requip, not Mirapex.  And so, yes, I have tried ropinirol / Requip.

[MikeZ]

I currently take nothing especially for RLS and every thing is the same without the extra doped up feeling. Don't need that!. Now when my back or legs REALLY bother me (short of those bad thoughts you take depression meds for) I go to shop about 2 mi. away any time day or night and use 3" wide sling under armpits on electric hoist and lift myself off floor as long as I can stand it. Nice feeling of euphoria for a time, what a relief it is. Bad thing is I see stars when time to come down and gravity does its thing again. Thinking of getting a cheap HF hoist for here at home so don't have to travel at wee hours. Sawyer, if you get that baby doctors name I'll take him of my Christmas card list. HA. I've taken Requip,Mirapex no luck, hope somebody has some.

[Raider Bill]

This is the one I got.
http://www.amazon.com/gp/product/B000VSKAI8/ref=oh_details_o04_s01_i00?ie=UTF8&psc=1

Really the only reason I picked this one was at 265 lb I wanted something that would hold me up. This one goes to 300.

Only drawback is that It's a big piece of furniture so will take up some room.

I looked at the chair ones but didn't think I got the full spine stretched.

Personally I like how it works and it does work well at the price of just 4 chiropractors visits. I actually look forward to hanging. smiley_hanged

[pineywoods]

Hey, thanks guys, I'm learning a few things here. I can add a few new twists also. My wife has rls, but it's worse during the day when she is layed back in a recliner. No pain to speak of, and only in the right leg. That's probably because the left leg is completely paralyzed from a stroke. She does have mild sleep apnea. No treatment for that, when she has an attack, I just wake her up. She is on a mild anti-depressant and has thyroid problems, Probably no connection, but a hip replacement also. Just for information purposes, add low dose asprin and blood thinner. Maybe if enough of us keep adding to this thread, some useful patterns may emerge..

[red oaks lumber]

 having taken most pills in the pharmacy :D without much or any sucess, i thought hell lets smoke pot and see if maybe just maybe that would help. well after doing that for a month that didnt help either :( so DEA dont worry i dont have any weed :D :D

[RPowers]

I am much younger than most of yall with RLS, so my symptoms may be different and from different causes. Also, I have not been to a DR to get diagnosed as I think with the internet available Dr's are almost superfluous for diagnosis.
My RLS, what I have always called "jumpy legs", is usually but not always worse after a day of inactivity, especially sitting at a desk or in a car. I have found that my shin and calf muscles, ligaments, and tendons seem to be very compressed and not flexible. If I find the muscle area that is jumpy at the time and then do stretches  to pull those tendons and such my legs calm down alot. I know that stretching does something both chemically and physiologically for your body, which is why athletes do it. I think that sometimes my legs are just too "compacted", because even normal walking and working really doesn't stretch things much. So I do primarily calf stretches for 10-15 minutes, and that usually helps alot.  YMMV

[loggah]

My wife Cheryl has had RLS for years,i mean 20 or 30 years, and she came across a spray of magnesium oil,a magnesium salt from ancient minerals ,just rubs it on her legs at night ,hasn't had a problem in about 6 months since she started using it !!!!! hope this helps.

www.ancient-minerals.com

[Brucer]

Well, I have it ... sort of. I'm at the very low end of the spectrum. The symptoms are mild, they disappear overnight, and I only experience it every couple of months.

Two things associated with RLS are iron deficiency and magnesium deficiency but those aren't universal causes. I don't recommend that anyone take supplements without medical advice. You might want to find out if your doctor has tested your body's iron levels.

Magnesium is present in green vegetables so if you eat your veggies you should be getting enough. However, diuretics can reduce your magnesium levels quite a bit. Alcohol also depletes magnesium levels. Taking straight calcium supplements can reduce your magnesium levels as well -- the two minerals compete for transport in your circulation system.

Just a couple of thoughts. There doesn't seem to be any one cause -- what works for one person may do nothing for someone else.

[SawyerBrown]

Two things associated with RLS are iron deficiency and magnesium deficiency but those aren't universal causes. I don't recommend that anyone take supplements without medical advice. You might want to find out if your doctor has tested your body's iron levels.

Both good advice, Brucer, I've been recommended to and tried both.  I know my iron level was way low for a while (depleted probably from over 15 gallons of blood donated over my lifetime), but now it's back up to where it should be after taking iron supplements.  (By the way, taking a lot of iron gives a whole new meaning to s****ing bricks!)  Also taking magnesium supplement (500 mg magnesium citrate).  I certainly can't say they've hurt, because my RLS is probably controlled as much now as it has been in a long time, but it isn't the cure-all either (at least for me).  But it might be good advice to have your blood tested for ferratin levels at the next regular visit.

I visited a new doctor yesterday (for other reasons), and we discussed RLS.  His opinion was I was already on the best stuff available (pramipexole and gabapentin).  However, he encouraged me to "experiment" with more gabapentin.  I take (2) 300-mg per day, but he said for many patients trying to contend with RLS and other related nerve maladies, they can go as high as 4g (or about 13 of my 300-mg pills) per day.  That's way more than I want to take, but he encouraged me to try an extra pill or two a day if I knew I was going to be doing a lot of sitting/driving, which always makes it worse.  That's what I plan to experiment with the next few weeks.  (The current medications are doing a pretty good job if I take the pramipexole 2-3 hours before bed.  The biggest struggle right now is if I need to sit/drive late in the day, and don't dare take the pramipexole because it makes me extremely drowsy).  I hate drugs, but sleep deprivation is also hard on a body, so for now I'm going to minimize the drugs but still get a good night's sleep.

The other interesting thing he asked me (unrelated to RLS) is how recently I'd had a tetanus shot.  When I was a kid, I think.  In our line of work, it's an extremely good idea -- so I did.  Will start a separate post to remind folks.

Thanks everybody for keeping this post going, again as somebody said above, maybe we can find some common themes.