Would appreciate any thoughts ya'll might have.
Does anyone out there have RLS (restless... - My MSAA Community
Does anyone out there have RLS (restless leg syndrome) along with MS? The last time I slept more than an hour at a time was about 2007.
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barbaradonnahoe
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Jesmcd2CommunityAmbassador
Hi barbaradonnahoe I don't think I have had the pleasure.☺️ I'm sure there are people here that do have RLS and will hopefully give you some good ideas on how to deal with it.
Not sleeping has got to be rough! I would be a walking zombie by now!😭
🤗💕
J🌠
Hi Barbara, nice to meet you. I have PPMS but I have had RLS for near on 35 years. I had it so bad I wore a figure of 8 in the carpet, and my hubby refused to buy another one. I was up all night, watching tv as I walked, I could not sit, as that made it worse. Finally I fell off my horse, needed back surgery, created havoc in the ward as I couldn’t keep still. They shot be up with OxyContin which helped. Also my neurologist put me on mirapex, so between those two and pregablin and codene, I now sleep at night and I have a new carpet. It’s a horrible disorder. Also I have been better since I had a hysterectomy, as my womb swelled up each month the RLS got worse, but now I don’t have it, it’s a lot easier. Just ask if you have any questions, Blessings Jimeka 🦋
So what do you take now to control it? I take Requip 3 times a day, but it's not a preventive drug, just " hope it works" drug.
I take pramepexole / mirapex . I find that the combination I take works for me. I just take 1 pramepexole at around 5.30 pm so by the time I go to bed at 7 pm it’s worked and I can settle down for the night. Plus I still take OxyContin morning and night which helps with the ms pain as well as the RLS.
Thanks for the info. I'll check it out for me.
YES, had it for years. Given Mirapex for a few years,.. though it stopped working, and I found alternating Mirapex with gabapentine, one night one, the next night the other, got another year out of these drugs. Then even the combination stopped, so lived with it grinning and bearing it for years till I didn't realize, it went away, but that's when my burning feet started? So then for a decade? my feet burned at night. Horrible! Thought about cutting them off every night. Became a walking zombie. Then came Medical Cannabis, specifically CBD rich strains of cannabis, but not also from hemp? Did the trick, and still does. But RLS creeped back in after a couple? years, replacing the pain controlled well by CBD cannabis, and still does (confirmed over and over by, no CBD, pain's back. CBD, pain's gone. What works for the RLS? Tried the RLS foot cream (magnesium &...) available from your local drug store again, tried it in the past, still limited benefit. But some. BUT what really works, and still does....Take a magnesium citrate (250mg) (less than 100% of the listed Recommended Daily Allowance Value) in the morning with your other daily vitamins, and then AGAIN about an hour before bed. Does the trick! No other meds or RLS creams, just this! Used the non-citrate magnesium, but in higher concentration. Either works for me when taken both morning and night. Good luck!
Waiting for Medical Cannabis to be legal here. I know it works. Feel better every time I visit Colorado. I do get to use CBD oil to help with pain. I take magnesium along with my other vitamins in the am. I'll try the night time one too. Thanks for the info!
I have rls x 19 yrs old left leg only.
Lidoderm patches on my calf give relief some time.
Deep massage and calf compression at nite help.
Topical and oral mag had not made a difference.
Have never tried mirapex or requip (too concerned @ side effects) but those meds and clonazepam have benefited my patients.
Gabapentin and lyrica and tegretol (taken for other things) no help. But some patients have gotten relief.
Once I self treated with bupropion for dysthymia and it helped the rls. Bupropion is a dopamine agonist and dopa deficiency is assoc. with rls. I contacted the pharma co. About this but they had no interest in pursuing.
Good luck!
Thanks for your input!
It’s 4am and I’m still up!!
I have PPMS and RLS. What a great combination. I tried Requip without any real success, now I use Pramepexole until it quits working.
When that happens, like tonight, I get up and write on my computer while enjoying a glass of whiskey. I eventually get tired enough to try sleeping again. Fortunately, this doesn’t happen all the time.
I’m going to ask for some muscle relaxer meds next time I see my neurologist. Sleep deprivation is terrible given that my normal symptoms come with daily fatigue anyway.
Keep talking to your doctor about using different meds until you find the right combination.
Good luck.
I have PPMS & RLS too. So much fun. Requip works a little for me. Haven't tried Pramepexole yet, but willing to try anything. I don't drink anymore, so that won't help. CBD helps too. Matter of fact, it's the only thing I've tried that doesn't give me weird side effects. Thanks for your input!
That’s funny you mentioned that. I remembered that I had one stick that someone gave me so I smoked it after writing this morning and was able to get some rest. I’m heading to the dispensary to see what is available.
Hoping Medical Cannabis will be legal here soon.
I have had it for about 5 years, not on any medication for it though. I have found recently that on nights that it's really bad are days that I have not had enough water, so now I am trying to, what feels like over-hydrating, to help keep it to a minimum. I'm tired of getting up and walking around the house in the middle of the night. A lot of times it leads me to the refrigerator which is not a good thing. I am going to have to do something though because it's starting to bother me during the day when I sit at the computer or sit to read etc.
Ropinerole (2mg) 4x a Day helps a lot
I also take Baclofen 3x a day(20mg)
My Neuro took me down from the Ropinerole 2mg 3x a day back to 1mg 3x a day. Seems to help a little. Said the higher dose could cause things to worsen? Go figure. Baclofen makes me feel odd so I quit that. Thanks for your info.
I recently got a Fitbit to track how many steps a day I take (high thus far has been 3800) but surprising to me was that while I sleep it shows I have 4 to 5 interruptions of restlessness and I always thought I slept like the dead as I always wake up on the same position. I now wonder if it's RLS lite?
Believe me, if you sleep through it, it's NOT RLS. There's no way you sleep with your legs (and sometimes my arms) flailing about moving in what ever motion they decide too.
Thanks barbaradonnahoe! This is where I get the best advice and insight! Scratching out RLS from my list of things to worry about.
Hi Barbara,
Dx with RRMS 3 yrs, have had RLS for many more without medication. PCP was not interested in prescribing anything ad I tend to develop the rare side effects of meds.
Neuro has me on Baclofen 2x daily, mirapex .5 and .025 3x daily, I drink plenty of water daily and walk daily on treadmill. I am usually able to get at least 5hrs of sleep at night, and a small nap during the day. If I don't use treadmill RLS flares and I wiggle,jerk or shake legs after about 2hrs in bed. I find the combination of meds and exercise do the trick as much as they can. Still feel the issues but not nearly as bad as it could be.
Sometimes it is just finding the right combination for you. Keep trying new ways to combat the monster, with your Drs help and I am confident you will prevail. Prayers and Good Vibes your way for some relief and SLEEP.
Debbie
Thanks for the info. Been dealing with this for about 20 yrs. Guess it's like MS. Can't cure it if they don't know what causes it.
