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How intense is your RLS? need help
  1. #1
    ChrisNev is offline Junior Member
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    Default How intense is your RLS? need help

    This is my first post, its a bit long, please bare with me.

    I went from a 30 pill a day habit of tramadol, then got on suboxone, and now i'm trying to get off suboxone and be free of all medication. I've been on it for 1 year now, was on 2 tablets a day. Then tapered half a pill a day to 0 in a 2 week span. Kind of fast, but I cant taper it slower due to arrangements I have.

    Depression, aches, diareah, anxiety, cold sweats, all that I can handle no problem whatsoever. That's all a piece of cake to me really.

    The one withdrawal symptom that ends up being so unbearable that it drives me to the point where I feel like i'm going to go insane is the restless muscles. I experience it in the arms and legs

    I've actually had mild RLS since I was born. As a child I would often rock myself to sleep to cope with it. But it was subtle, it was only with the legs and I could always get a decent nights sleep.

    But going through withdrawal has made it 100x intense. I dont know if its because ive been on the pills for a long time, and because I naturally had RLS, maybe a combination of both.

    This week, I lasted 5 days off suboxone. But as you know, the RLS doesnt let you sleep. That's not so bad, but the crazy thing is, it came on so strong that I couldnt bare staying awake either! At day 5 I could not even sit and watch tv without it attacking my nerves. I had to CONSTANTLY flex my arms and legs. And since I could barely eat anything, and I had not slept in days, I didnt have the energy to constantly keep my muscles in use.

    Not being able to sleep, and not being able to stay awake seriously felt like I was being tortured, and I swear if I had to endure that for even 24 more hours I would have lost it. I'm in my 20s and healthy, and have a high threshold for pain too.

    This morning I made some calls and went to a 24 hour pharmacy and relapsed. I feel so disappointed with myself when I think of how the past 5 days of hell was now for nothing.

    I just need to find something that can calm down the RLS before I quit the suboxone again. If I cant make it on my next attempt, I think im going to have to go to a professional clinic and put myself in major debt.

    Here are some of the remedies I have tried that haven't been effective against the RLS:

    clonidine (works wonders for all other withdrawal symptoms, but not RLS)
    immodium (liquid)
    potassium (ate lots of bananas)
    hot baths and exercise

    treatments i havent tried:

    prescription meds specifically for RLS: ropinirole, and mirapex
    valium

    I hope that a non narcotic, non addictive med can treat it. But im worried that only a narcotic drug will be effective enough to relieve it. And that I might have to again choose the lesser evil, like valium.

    Has anyone had RLS so intense that even staying awake was a nightmare and the urge to flex your muscles was hitting you constantly for hours on end?

    If so, how long did it last? how long did it take before you could sleep again? Did you find anything that helped it go away?

    let me know

    thanks
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  2. #2
    Mike VG is offline Member
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    The medication that two people that I know who have RLS, but no longer experience it ANYMORE is called Gabapentin (Neurontin).
    Mike VG
    Mike VG

  3. #3
    ChrisNev is offline Junior Member
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    thanks for tip. i read it's wikipedia article. it looks like it may have potential for me. i'll add it to my list of possible treatments.

  4. #4
    Junkie781 is offline Member
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    Don't beat yourself up about the relapse. I don't know anything about RLS, sorry, but just thought I'd offer some encouragement in your quest! Good luck to you!

  5. #5
    outdrlvr is offline Member
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    Im on Day3 opiate free. Withdrawing from morphine - hard for me to say what my equivalent dosing was because everywhere on this site I see different drug names. However..
    I know exactly what you mean about the RLS... its a freakin nightmare. The rest of the symptoms aren't bad (I have a high pain tolerance too,).
    I know you say you've tried potassium through lots of bananas, but Im taking a supplement, every four hours or so. Im also taking magnesium, and l-tyrosene, all throughout the day. Ive found it really helps a lot. Not sure if this will be a problem, but I don't intend to keep the doses of vitamins this high for very long.

    Started st. John's wort too since withdrawal can make you feel very sorry for yourself.(hate prescription anti depressants, never needed them and the side effects for me are unbearable)
    Ive tried valium in the past, as well as clonazepam, and found it did nothing for the RLS. I just became very drowsy, and more frustrated cos I was sssooo tired but still bouncing around all over the place. Id rather have the energy to bounce until I can tire myself out and get some rest... eventually it does come. But, again I'll say the vitamins have really helped this time around.
    I take melatonin to help me sleep, but you might need something stronger. Talk to your doc.
    Withdrawals for me is what brings on RLS, otherwise I dont have it - thankfully.

    Hope you find some relief.
    And yeah, don't beat yourself up over the relapse, this is a really really hard thing to go through, both mentally and physically. I consider myself currently fortunate cos Im sick of the day to day fog of morphine, and the dreaded withdrawal hell. And Im going to use this as a reminder for the next time I want to go see my doc for another prescription. Not worth it.

    Have you heard of the "Thomas Recipe"? It's on this site, that's where I got the idea for the vitamins supplements.

  6. #6
    ChrisNev is offline Junior Member
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    Quote Originally Posted by outdrlvr View Post
    Im on Day3 opiate free. Withdrawing from morphine - hard for me to say what my equivalent dosing was because everywhere on this site I see different drug names. However..
    I know exactly what you mean about the RLS... its a freakin nightmare. The rest of the symptoms aren't bad (I have a high pain tolerance too,).
    I know you say you've tried potassium through lots of bananas, but Im taking a supplement, every four hours or so. Im also taking magnesium, and l-tyrosene, all throughout the day. Ive found it really helps a lot. Not sure if this will be a problem, but I don't intend to keep the doses of vitamins this high for very long.

    Started st. John's wort too since withdrawal can make you feel very sorry for yourself.(hate prescription anti depressants, never needed them and the side effects for me are unbearable)
    Ive tried valium in the past, as well as clonazepam, and found it did nothing for the RLS. I just became very drowsy, and more frustrated cos I was sssooo tired but still bouncing around all over the place. Id rather have the energy to bounce until I can tire myself out and get some rest... eventually it does come. But, again I'll say the vitamins have really helped this time around.
    I take melatonin to help me sleep, but you might need something stronger. Talk to your doc.
    Withdrawals for me is what brings on RLS, otherwise I dont have it - thankfully.

    Hope you find some relief.
    And yeah, don't beat yourself up over the relapse, this is a really really hard thing to go through, both mentally and physically. I consider myself currently fortunate cos Im sick of the day to day fog of morphine, and the dreaded withdrawal hell. And Im going to use this as a reminder for the next time I want to go see my doc for another prescription. Not worth it.

    Have you heard of the "Thomas Recipe"? It's on this site, that's where I got the idea for the vitamins supplements.
    thanks for the reply. it sounds like you've went through the same thing to the same extent.

    last night i spent a lot of time researching medications, and have compiled a list of about 6 prescription meds, and 6 over the counter remedies to try.


    i have a feeling that the valium will just make me sleepy but not help the RLS. and thats what happened with the clonidine, i just got so sleepy which made the RLS even more agonizing.

    ill be trying all the over the counter things from the thomas recipe.

    after i quit and try these things, i'll share with what worked the best.

    being back on the pills after 5 days of being clean has made me realize what a rollercoaster of sickness and euphoria it is, and how much better it is to have a consistent state of being.
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  7. #7
    Mike VG is offline Member
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    I have 2 friends that used to suffer terribly from RLS. They no longer have this sydrome due to a medication called Gabapentin. They tried everything the Doctor's would prescribe them, but nothing worked. Gabapentin (Neurontin) works for RLS. They don't know how, just like they don't know how it works for my Postherpetic Neuralgia. If I were you and anyone on this board who suffers from this, I suggest you get your Doctor to write a script for it. They now have uninterrupted sleep for the first time in their lives. And by the way, it's a non-narcotic.
    Mike VG
    Last edited by Anonymous; 10-20-2007 at 09:44 PM.
    Mike VG

  8. #8
    ChrisNev is offline Junior Member
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    Quote Originally Posted by Mike VG View Post
    I have 2 friends that used to suffer terribly from RLS. They no longer have this sydrome due to a medication called Gabapentin. They tried everything the Doctor's would prescribe them, but nothing worked. Gabapentin (Neurontin) works for RLS. They don't know how, just like they don't know how it works for my Postherpetic Neuralgia. If I were you and anyone on this board who suffers from this, I suggest you get your Doctor to write a script for it. They now have uninterrupted sleep for the first time in their lives. And by the way, it's a non-narcotic.
    Mike VG
    Neurontin is pretty much the one at the top of my list. That will be the first one I try, and hopefully the only prescription med I need.

  9. #9
    outdrlvr is offline Member
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    Good luck Chris...

    Im on Day 4 - nearing end of day 4, and it's been a piece of cake compared to day 2 and 3, still not out of the woods, but at least getting out with a friend today was more appealing than my bed or couch with my blanky..

    It gets easier, in reality a relatively short period of time. Although withdrawals can literally make the clock seem like it's going backwards, and worse.

    This site, and the vitamins (that I found through this site) has been a huge help, I don't feel so alone in this, and I find it easier to talk here than to my friends. Of whom most except for two, will never know I was on any kind of pain meds.

    Let us know how you're doing, as others have said to me "we're all rooting for you.."

    Peace

  10. #10
    Survivor23 is offline Junior Member
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    Don't be so hard on yourself about taking another suboxone, I know it seems like you threw all those days down the toilet, and you know what ..Maybe in REALITY you did - but at least you know in your heart that you MADE it through 5 days, and you KNOW you can again. I'm sure after you get the whole RLS thing taken care of it will be a peice of cake - (Well not really, but you get what I'm sayin..*I HOPE*)
    I am also on Suboxone, I am only on a 14 day program though, I've been on exactly one week, so next week around this time I will be all done with my pills and boy..am I scared to death already.
    Today I went into my doctor for my check up, even on the suboxone for some reason I've been feeling heavy RLS symptoms also, My doctor said it could be a few things..withdrawl from vicoden (Which I don't really understand because I'm not feeling any other WD symptoms) RLS, or underlying anxiety. Which he and I both think its the anxiety thing.
    But anyway back to your thing, he suggested I take 2000 mg of magnisum a day and see if that helps me out at all..
    So I'm going to try it out and see what happens.
    I do understand your pain though, I've never had RLS and it is honestly just CRAZY..When I lay down to go to sleep it seems like everytime I relax to the point I'm about to fall asleep my legs just FREAK out on me...then they'll calm down and my arms will jerk around...so yea I know what you're going through and I hope you that you do well getting off the suboxone...Let me know how you're doing...
    My doctor said it wont be 1/10th of the WD feeling I've felt from the vicodens so let me know if hes just bull****ing me okay?? Thanks a lot !

  11. #11
    ChrisNev is offline Junior Member
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    Well, I got the Gabapentine (Neurontin)

    and some of the over the counter remedies from the Thomas recipe:

    L-Tyrosine, Milk of Magnesia, B6, liquid Multivitamin.

    and still have some of my Clonidine.

    and a few Valium for backup.

    I'll be started it the day after tomorrow. Atleast one of these things have got th help the RLS!

    I'll let you guys know.

  12. #12
    outdrlvr is offline Member
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    Default Good luck Chris

    I hope it all goes well for you. Hang in there, it'll still be hard even if you don't feel the symptoms of RLS.
    It CAN be done though. Im on Day 8 now, remembering back to the anxiety I felt just a week ago, and recognising how much stronger and more like myself I am today.

    I've just been through an awful few days, found out Im a victim of bank card fraud, (ya when it rains it really pours) this ***hole racked up thousands in purchases and cash withdrawals. I was tempted to go to my doc for benzos, but glad I decided not to. Pretty scarey thing to have happen, but Im glad to be sitting here realising I don't need drugs to help me cope with stressful situations.

    Not preaching, just sharing (I'll never judge someone going through or who has gone through what I did with opiates).

  13. #13
    miss kitty4 is offline New Member
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    Hi,
    I have had RLS for 15 yrs. I recently started taking Mirapex and it worked with the first dosage! My neurologist told me some of her patients said this over the counter medicine works just as well: HYLANDS LEG CRAMPS (I haven't tried it yet.) You can buy it at
    Walmart or any drug store.
    Good Luck I know what you are going thru.
    Miss Kitty4

  14. #14
    ChrisNev is offline Junior Member
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    Update:

    So I tried the Neurontin (Gabapentin)

    It didnt work

    I even took double doses. I think it may have helped mellow me out, but I dont think it did anything for the RLS, and if it did, it was too subtle to notice.

    Plan B:

    try Mirapex or Requip.

    since they are the only 2 medications that are FDA approved to treat RLS.

    Only problem is that they are very expensive! I dont have insurance, i'll also have to pay $100 for the doctors visit with no guarantee that i'll get either medication.

    If I cant try either of those, then I might try the tapering thing again.

    At the very least, I am only taking 1/4 pill of suboxone a day, I was taking 3 a day before.

  15. #15
    chrisb751 is offline New Member
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    Default So Tired

    Reading your post is like reading about my life. Ever since I hurt my back when I was 17, I've had rls. Its been so bad that I've tried sleeping on the floor. After awhile it went away and then came back with a vengence. I started going to pain management about 3 yrs ago and I've tried everything perscribed for rls that they make. Nothing worked except pain medication. Now I'm trying to get off of it and detoxing is bad enough but try it with relentless rls. It just about breaks you. I just can't get off pain meds b/c of this condition. It just about drives you insane! So I feel your pain. If you find the answer please let me know b/c I'm searching also. Mine is more in my lower back and legs. I've tried hot baths and mirapex and lyrica and it just makes it worse for me. I've even been told its all in my head! I promise its not. Like I said its relentless. It just dosent stop. So anyone with answers I'm all ears.
    Last edited by Anonymous; 05-26-2010 at 03:11 AM.

  16. #16
    newyorkgal is offline Advanced Member
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    RLS is one of the major symptoms of w/d for most people and it is a killer. When dropping down on sub from .5 to .25, I had RLS and RAS that was so intense I went back to .5. I know, it doesn't let you think straight becasuse all you're thinking of is it. I know there is a perscription med especially for RLS but I don't recall the name of it. Perhaps someone does.

  17. #17
    gymper11 is offline New Member
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    Default been there/still there with RLS use marijuana/tramadol

    I hope the guy that started the thread is doing ok, and thanks for starting it. RLS sucks, period, point, blank. I have been being treated for it for about 12 years. I may have had it before but I used to drink a lot so I don't think I noticed since I just passed out. I got sober and found I couldn't sleep. I thought I had insomnia. Then I found out RLS runs in my family and I talked to other aunts who had it and yep it was the exact same thing. My great-grandmother had it before they knew what it was so people who think this is a made up disease are wrong. If I could have willed myself out of it I would have.

    As far as non-medical treatments I've tried them all but if you have severe restless leg, they may help, but probably won't take care of it. Often they just get you to sleep and then you wake up like 10 minutes later.

    Medically I started with Neurontin which worked for about two years. Then I switched to Mirapex which worked for several more years. Then I noticed some ssues - flying through Las Vegas I would drop 100$ in slot machine on layovers. Then I became a full-blown addict. I had same problem on Requip. So those two, although affective, I had to stop taking.

    I had a huge debate in my head about it because I'm in A.A. My next options were narcotics - namely opiates. Well I'm not stupid and I know I would get addicted to those quick. So I read that marijuana helps, and tried that. It did work. Although it has it's negative sides too. But I felt extreme guilt, and still do. In fact I just called A.A. about it today to find out if there were special meetings for people that are forced to take narcotics, because I feel separate from A.A. The stigma against marijuana is quite large in A.A.

    On the other hand, it's not near as addictive as the opiates. I did end up trying opiates at one point and got addicted right away. Started using them as soon as i woke up even though I take it for nighttime. Right now I'm sober as a judge. I have no desire to smoke pot during the day, although sometimes my evenings start a little early I must admit. So it's slightly addictive for me.

    I went to another doctor that gave me a combination therapy of Neurontin, and tramadol which again worked for a year or two but then wasn't enough anymore. Now I use the nuerontin, tramadol, ambien, and the medical marijuana so I don't have to get baked to kingdom come to get to sleep. I'm in CA where they have medical marijuana, but it's expensive. And you build up a tolerance of about 5x to 10x of when you start so when you start you're like "perfect" one or two tokes and I can go to sleep. Now it's like 5 bong hits at least even with all those other medications. But if I were taking Oxycontin or one of those, I would be dead. So those are my choices.

    Hope this helps someone.
    -jim
    Last edited by Anonymous; 11-11-2010 at 09:31 PM.

  18. #18
    axeman87 is offline New Member
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    Hello ChrisNev,
    I know exactly what you were going through. I am new to this place and just reading on this forum has helped calm me down a bit and take my mind off things. Today is my 5th day off of the Suboxone, and the RLS is pure hell..

    This is my 4th or 5th time trying to kick the subs and am very determined to make it through this time. Like you I can deal with the other symptoms but the RLS is the worst.. I have it in my legs, arms, back, and neck and is horrifying.. Some may not agree with this but , I have been using klonopin(.5 around 10am and another .5 around 10pm), exclusive amounts of marijuana, and hot showers/baths. Sometimes 4/5 a night. I also try to get out and do some walking each day.. Its horrible but it would be WAY-WAY worse if I didn't do those things. I have also heard that potassium helps so I have been eating banana's and drinking Ensure's for vitamins. It's no miracle cure for the restlessness, but I just though I would share what I have been doing to cope with it..

  19. #19
    ThePistol is offline Banned
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    Looks like you got alot of answers.Im jus hear to tell you ..I Feel for you ..I Read your post and it was like exactly what i woulda wrote..All them damn symtoms aint nothing really.

    But the RLS..I Barely Made it,But i had a partner to do my w/d with half the time.when i wasnt at work

    The other time i walked and walked and walked till i got home to my wife and we talk to each other and and jus complained to each other..Im sorry man...

    Heres a funny thought .i swear i thought i was gonna have to do it...stretch my legs so so so far out..and tie my legs stretched out some how to something....My 9th day is here brother im living it

  20. #20
    shanenc14 is offline New Member
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    Exclamation

    I have HORRIBLE RLS exactly as described in this thread. I was on 400mgs of Neurontin 3 times daily, which is the maximum dose of 1200mgs per day, and it worked pretty well for me for about 2 yrs, and it then started to poop out on me about 2 months ago. My doc then put me on Lyrica 150mg 2-3 times per day, and I feel like a totally different person! I'm almost 29, and have had severe RLS for as long as I can remember, Lyrica, at least in my case, has been an absolute miracle drug, hands down. Ya might wanna add this med to your list (near the top!) Note: It IS a controlled substance, and Neurontin is not. Reason being, Lyrica is chemically very similar to Neurontin, however, it is many times more potent.

    I wish you luck, and pray that you get some relief, I know the hell RLS causes, and that's exactly what it is, hellish torture to the point that ya just wanna crawl out of your own skin!

    Again, Best of luck **HUGS**

  21. #21
    shanenc14 is offline New Member
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    Smile

    Quote Originally Posted by miss kitty4 View Post
    Hi,
    I have had RLS for 15 yrs. I recently started taking Mirapex and it worked with the first dosage! My neurologist told me some of her patients said this over the counter medicine works just as well: HYLANDS LEG CRAMPS (I haven't tried it yet.) You can buy it at
    Walmart or any drug store.
    Good Luck I know what you are going thru.
    Miss Kitty4
    Another Hylands OTC all-natural option that does help a bit is Hyland's Restful Legs tablets, usually in a reddish-orange box, 50 tabs per bottle.

  22. #22
    lexsckat02 is offline New Member
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    Cool I've had RLS and RAS for a long time... use tramadols but....

    Chris your quoted below because everything you're going through is what I am too. Just started more research on another site and I found the the OTC drug a local Walmart carries Hyland's Restful legs for $5! I will go try it. I've read post similar to ours who seem to say it works. I have no energy without my Tramadols aka Ultrams. When I'm out it's BAD withdrawals. I have used Loritabs, Vicodin, etc any hydrocodone products that are similar for pain and it helps ease the withdrawals. My problem is without tramadols I have no peace. But I'm tired of having withdrawals because even taking them as prescribed it happens but I have a high tolerance so I have to up the recommendations myself on bad days. There's other things I've tried to cope but they don't work for me. For instance, the hot baths (nope), Requip (nope), taking vitamins and Geritol an iron supplement for energy (will make you gag to puke sorry but it will). I'm out of options. I do want to lose my drs script just yet unless I can find a solution to where I don't need the trams anymore. They do effect other things like moods, loss of appetite and constipation which causes severe stomach cramps. I have been up all night tonight fighting my withdrawals and RLS RAS.. yet 4 kids are about to get up and Mommy's job is never done, regardless. I cried tonight for the first time because I'm a strong willed person but I can't continue down this path forever. I mentioned to the doc that I was having the withdrawals when I'm low or out but he says you shouldn't be if you take it right. Well I am taking them right but like I said my tolerance is high so I have to take more on some days. It's a stress train and I'm about to get it. Any other advice you have for me please hit me up on facebook or email: lexsckat02@yahoo.com (leave subject line of some sort or I will not respond or add dang spammers.




    Quote Originally Posted by ChrisNev View Post
    This is my first post, its a bit long, please bare with me.

    I went from a 30 pill a day habit of tramadol, then got on suboxone, and now i'm trying to get off suboxone and be free of all medication. I've been on it for 1 year now, was on 2 tablets a day. Then tapered half a pill a day to 0 in a 2 week span. Kind of fast, but I cant taper it slower due to arrangements I have.

    Depression, aches, diareah, anxiety, cold sweats, all that I can handle no problem whatsoever. That's all a piece of cake to me really.

    The one withdrawal symptom that ends up being so unbearable that it drives me to the point where I feel like i'm going to go insane is the restless muscles. I experience it in the arms and legs

    I've actually had mild RLS since I was born. As a child I would often rock myself to sleep to cope with it. But it was subtle, it was only with the legs and I could always get a decent nights sleep.

    But going through withdrawal has made it 100x intense. I dont know if its because ive been on the pills for a long time, and because I naturally had RLS, maybe a combination of both.

    This week, I lasted 5 days off suboxone. But as you know, the RLS doesnt let you sleep. That's not so bad, but the crazy thing is, it came on so strong that I couldnt bare staying awake either! At day 5 I could not even sit and watch tv without it attacking my nerves. I had to CONSTANTLY flex my arms and legs. And since I could barely eat anything, and I had not slept in days, I didnt have the energy to constantly keep my muscles in use.

    Not being able to sleep, and not being able to stay awake seriously felt like I was being tortured, and I swear if I had to endure that for even 24 more hours I would have lost it. I'm in my 20s and healthy, and have a high threshold for pain too.

    This morning I made some calls and went to a 24 hour pharmacy and relapsed. I feel so disappointed with myself when I think of how the past 5 days of hell was now for nothing.

    I just need to find something that can calm down the RLS before I quit the suboxone again. If I cant make it on my next attempt, I think im going to have to go to a professional clinic and put myself in major debt.

    Here are some of the remedies I have tried that haven't been effective against the RLS:

    clonidine (works wonders for all other withdrawal symptoms, but not RLS)
    immodium (liquid)
    potassium (ate lots of bananas)
    hot baths and exercise

    treatments i havent tried:

    prescription meds specifically for RLS: ropinirole, and mirapex
    valium

    I hope that a non narcotic, non addictive med can treat it. But im worried that only a narcotic drug will be effective enough to relieve it. And that I might have to again choose the lesser evil, like valium.

    Has anyone had RLS so intense that even staying awake was a nightmare and the urge to flex your muscles was hitting you constantly for hours on end?

    If so, how long did it last? how long did it take before you could sleep again? Did you find anything that helped it go away?

    let me know

    thanks
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  23. #23
    lexsckat02 is offline New Member
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    I'm in your boat too but I wrote before now I will at least try the OTC Hylands Restful legs but I still need my energy level

  24. #24
    lexsckat02 is offline New Member
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    Forgot to mention. I had RLS and RAS way before any pain problems or pregnancies.. It started lightly in High School in waves. Then after preggers it hard all the time. After each child I've bore there's never been any relief until pain meds like I mentioned in my main post.

  25. #25
    Joglux is offline New Member
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    I've had pretty severe RLS since 2000 and I have used either Mirapex (pramipexole) or Requip (ropinirole) with good results. BUT, there is a little known fact that these medications, after you have taken it for awhile, will actually cause the RLS movement. You can tell that is starting to happen because you will get symptoms earlier in the day. At that time my Dr changes me to the other medication and all is well again for a few months...until we have to switch back to the other medication. To get off an opiod it would be well worth trying the above meds. I wish you good luck!

  26. #26
    iloerose is offline Platinum Member
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    Absolutely Not! These drugs should not be taken for the minor RLS of detox. There are home remedies that help. Both of these drugs have dangerous side effects. My boyfriend had parkinson's and was on both at one time or another. I'm sorry that some people must take these drugs. What works for opiod detox:

    Gatorade
    Hyland's remedies (calmes forte, restful leg)
    Hot baths
    Heating pads

    Opiod physical detox doesn't last all that long. No requip or Mirapex, read the side effects of these drugs. I watched someone endure those side effects.

  27. #27
    Izzn is offline Member
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    Read this thread with great interest. I have had RLS for 38 years. Seems to come and go. I have found benedryl will 100% of the time make the RLS far worse. The RLS I had during c/t WD was a nightmare. It was intense for WEEKS. I had restless leg, restless back, restless butt, restless arms, intense and awful. I take nothing for it right now, but I did find a OTC sleep aid that works for me but doesn't exacerbate the RLS. It's doxylamine succinate, it is in one of the formulas of OTC Unisom. I have to be careful to read the labels as most OTC sleep aids are pure benedryl, which those of us with RLS should not take! I know someone else who is able to take the doxy wthout ill effects to her RLS. It isn't much but it is something at least, that might be able to help some RLs sufferers get some rest. I suggest taking it early in the evening, before the RLS kicks in. Also, it wont work every night. At most I can only use it once or twice a week or it is just ineffective.

    I see my doc next week, but I doubt he will care any more than he did the last time I asked for help on this. He still thinks I am talking about CRAMPS in my legs, which isn't it at all. I have no insurance so I am pretty stuck with whatever I can get...

    Thanks to the person who started this thread all those years ago!

  28. #28
    JDubya is offline New Member
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    Default This should keep going!

    It is very helpful to me to read all of these posts so I am going to add mine

    My problem with RLS started in 2011 along with partial seizures, lost memory and lost time. The specialist Dr put me on Gabapentin for squirrelly nerve sensations like crawling bugs, burning sensation, and numbness. I was having very vivid dreams - so vivid that I could get them mixed up as actual memories even though I could not remember the dreams at all - they would come back as memories later. I had never taken drugs of any kind for any reason before this except an occasional Bufferin for back pain (including my youth and college days). In there somewhere, while trying to allow me to sleep through the night (they tried sleep apnea, too) the Dr put me on ropinirole er 2 mg at bedtime. Ropinirole ER is very expensive so the Dr changed that to 4 mg of ropinirole at bedtime. No problem, but too many other problems to really tell if it was doing anything.

    I went on like this going on two years (2013) dealing with gout, knee problems, ankle/feet problems, partial seizures and back pain, and one by one the Dr found a way to overcome each. In late 2013 the back pain started to get worse. The Dr had by now increased the Gabapentin to 2400 mg (800 mg three times a day). The Dr wanted me to try a specialty topical cream that supposedly (the Dr thought) would provide enough Gabapentin topically. We found out that only about 5% of it was getting to me that way as I went into a tailspin. Most of it I cannot remember, but my regular doctor took over the pain meds, reduced the Gabapentin to 900 mg (3 x 300 mg) per day with Naproxen (500 mg twice a day) and finally she added Tramadol (50 mg twice a day) to control all my pain except the RLS. The specialist Dr never did realize that I was actually suffering from RLS and was trying to fix the pain with Gabapentin. So now I was beginning to suffer with chronic kidney disease. Shortly after reducing the Gabapentin, the kidney levels became stable.

    While dealing with all of this, I noticed that I could change the occurrence of the problem that I was having (mostly in my legs, especially the right upper leg muscles) was changed by when I took the ropinirole pill. I moved the time from 11 pm to 10 pm and went to bed earlier because the problem (RLS) was giving me so many issues that I could not use the computer at night, so I went to bed earlier and got up earlier to do the computer stuff. The pain in my legs (awful, awful stuff) went away within about one hour of taking the pill. So the Dr increased the ropinirole to 6 mg all at one time (oh, we tried moving the 4 mg to 6 pm first and that made me sleepy so I couldn't do anything in the evening) at the same time - the Dr knew what would happen and it did - nausea to the point of gagging. I did that a few days and called the Dr to tell them that I was moving it out to 10 - 11 pm, but that still caused nausea all day long.

    The Dr then suggested that we try ropinirole er again at 6 mg at bedtime. I did that and it reduced the nausea (still some) but the ropinirole er is so expensive. I called the Dr and suggested that I wanted to try spreading the regular 2 mg ropinirole (not er) over the day ie, 2 mg every 8 hrs. I found no difference with that but the Dr referred to this method as archaic. But it works except that now I still occasionally have the pain in my legs around 8 - 9 pm, usually relieved by walking around. So I called the Dr again and suggested that I needed 2 mg at 7 am, 2 mg at 3 pm and 4 mg at 10-11 pm. I heard nothing back from them so I started using that regimen and, lo, it works! Still some nausea, but otherwise ok. (The Dr had the office call me and tell me not to come back.)

    I think the Dr was peeved because I took it upon myself to relieve my pain when I needed to do so - they had set me up on 3 month visits and then 6 months and I was just supposed to tough it out I guess. I called them each time and told them what was happening and what I proposed to do - they did not object. I think the Dr was trying to get me onto a regimen that cost an arm and a leg (like Lyrica, which did absolutely nothing for me - I was taking Gabapentin and ropinirole so it had no positive effects) so that they could get a kickback from the pharma.

    I think this way because accidentally I started taking Levetiracetam (the generic Keppra) by mistake and once I was on it, I noticed a benefit from it. But the Dr insisted that I take Keppra, and when I pointed out that I didn't want to change because she was increasing the dose and changing meds at the same time. The Dr was visibly unhappy with that, but went along. I finally topped out with 1250 mg of Levetiracetam twice a day and that seems to be working. Oddly, the Dr was so upset that she called us liars, in effect, when we told her that we had not insisted on the generic - we didn't know Keppra from generic - apparently the pharmacy accidentally made the switch. Then there was that specialty topical cream which I am sure would have cost us a fortune had we continued to use it, then Lyrica (which my regular doctor told me to get off right away having had personal experience with it, and then ropinirole er. The Dr knew full well that 6 mg or regular ropinirole would make me nauseous, but prescribed it anyway, trying to get me sick so that they could get me on the expensive drug. Then got angry with me when I found a way around it. Don't misunderstand me, the ropinirole er works fine but it cost $144 per month. I have $0 copay with ropinirole and all I had to do was spread it over the day - just like er. No wonder the Dr was peeved. They don't make squat on Medicare patients and the Part D wouldn't pay on these expensive new drugs.

    BTW, I had a seizure right in the specialist Dr's office while I was talking with them and they did not even recognize it! I woke up when my wife called me blocks away on some street I did not recognize and cannot remember much about that day at all.

    Sorry, for such a long post. I didn't even get into much of the detail LOL.
    Last edited by Anonymous; 01-28-2015 at 11:31 AM. Reason: Correct wording errors

  29. #29
    carperry is offline New Member
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    Quote Originally Posted by ChrisNev View Post
    This is my first post, its a bit long, please bare with me.

    I went from a 30 pill a day habit of tramadol, then got on suboxone, and now i'm trying to get off suboxone and be free of all medication. I've been on it for 1 year now, was on 2 tablets a day. Then tapered half a pill a day to 0 in a 2 week span. Kind of fast, but I cant taper it slower due to arrangements I have.

    Depression, aches, diareah, anxiety, cold sweats, all that I can handle no problem whatsoever. That's all a piece of cake to me really.

    The one withdrawal symptom that ends up being so unbearable that it drives me to the point where I feel like i'm going to go insane is the restless muscles. I experience it in the arms and legs

    I've actually had mild RLS since I was born. As a child I would often rock myself to sleep to cope with it. But it was subtle, it was only with the legs and I could always get a decent nights sleep.

    But going through withdrawal has made it 100x intense. I dont know if its because ive been on the pills for a long time, and because I naturally had RLS, maybe a combination of both.

    This week, I lasted 5 days off suboxone. But as you know, the RLS doesnt let you sleep. That's not so bad, but the crazy thing is, it came on so strong that I couldnt bare staying awake either! At day 5 I could not even sit and watch tv without it attacking my nerves. I had to CONSTANTLY flex my arms and legs. And since I could barely eat anything, and I had not slept in days, I didnt have the energy to constantly keep my muscles in use.

    Not being able to sleep, and not being able to stay awake seriously felt like I was being tortured, and I swear if I had to endure that for even 24 more hours I would have lost it. I'm in my 20s and healthy, and have a high threshold for pain too.

    This morning I made some calls and went to a 24 hour pharmacy and relapsed. I feel so disappointed with myself when I think of how the past 5 days of hell was now for nothing.

    I just need to find something that can calm down the RLS before I quit the suboxone again. If I cant make it on my next attempt, I think im going to have to go to a professional clinic and put myself in major debt.

    Here are some of the remedies I have tried that haven't been effective against the RLS:

    clonidine (works wonders for all other withdrawal symptoms, but not RLS)
    immodium (liquid)
    potassium (ate lots of bananas)
    hot baths and exercise

    treatments i havent tried:

    prescription meds specifically for RLS: ropinirole, and mirapex
    valium

    I hope that a non narcotic, non addictive med can treat it. But im worried that only a narcotic drug will be effective enough to relieve it. And that I might have to again choose the lesser evil, like valium.

    Has anyone had RLS so intense that even staying awake was a nightmare and the urge to flex your muscles was hitting you constantly for hours on end?

    If so, how long did it last? how long did it take before you could sleep again? Did you find anything that helped it go away?

    let me know

    thanks
    RLS for going on twenty years, multiple hospitals, multiple doctors multiple drugs. Suboxone for more than fifteen, I think, years. Now take the films for pain, I'm a banged up 77, and RLS. I know the above doesn't help. Nevertheless Suboxone is the only drug that worked. I am a patient at Johns Hopkins. Goes without saying there is no better place for treatment. I urge you to contact them.
    Last edited by Anonymous; 06-02-2016 at 05:25 PM.

  30. #30
    Bluto-61 is offline New Member
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    Default One thing that I havent seen addressed yet on this Thread...

    Quote Originally Posted by carperry View Post
    RLS for going on twenty years, multiple hospitals, multiple doctors multiple drugs. Suboxone for more than fifteen, I think, years. Now take the films for pain, I'm a banged up 77, and RLS. I know the above doesn't help. Nevertheless Suboxone is the only drug that worked. I am a patient at Johns Hopkins. Goes without saying there is no better place for treatment. I urge you to contact them.
    Hi, I'm new to this forum, I'm currently on day 4 of withdrawaling from a heavy Oxycodone depaendancy due to deteriorated hip joints. I was prescribed a high dosage of oxy to keep me on my feet until i could undergo both hip replacements, It's been 6 monts and I'm recuperating from my 2nd hip replacement and no longer need the pain meds (not that I've needed them for awhile, I was just taking them so I wouldn't withdrawal at the end). That's my story now on to RLS... I have it pretty bad now with the withdrawals... it is indeed a nightmare, and I plan on trying some of the non-prescription remedies mentioned above to help me during my detox. great info!

    I've had RLS since I was a kid, as many on this thread have expressed. I'm 55 years old now but I made an important discovery when i was in my early 30's, I discovered that my RLS was directly related to my consumption of dairy products. I was not "dairy intolerant" I was full-on Dairy Allergic... big difference.

    Dairy is in just about 75%-80% of all processed foods. It's in just about everything, if you do a bit of research you'll find that you need to be very purposful in avoiding dairy as so much of the food that we eat is processed and "improved" with dairy proteins, whey, cheese (dried) etc...

    When I do well to avoid dairy products my RLS is basically nil. I know when I've eaten someting containing dairy within 10-15 minutes as my legs begin to pump and jiggle beyond my control, it's very uncomfortable and annoying for me and everyone else

    Anyway, just a thought that some of you who are experiencing the worst RLS symptoms during withdrawal MAY be dairy allergic without knowing it. It may help (as it has with me) to be careful to avoid dairy products (or any foods/substances that you may be allergic to) during withdrawal so as not to exacerbate the intensity of the RLS.

    I hope that this info might be helpful to some who may share my affliction

    Bluto

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