How intense is your RLS? need help

[ChrisNev]

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

[Mike VG]

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

[ChrisNev]

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.

[Junkie781]

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!

[outdrlvr]

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.

[ChrisNev]

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.

[Mike VG]

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

[ChrisNev]

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.

[outdrlvr]

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

[Survivor23]

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 !

[ChrisNev]

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.

[outdrlvr]

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).

[miss kitty4]

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

[ChrisNev]

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.

[chrisb751]

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.

[newyorkgal]

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.

[gymper11]

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

[axeman87]

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..

[ThePistol]

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

[shanenc14]

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**

[shanenc14]

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.