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PostPosted: Thu Feb 12, 2015 8:16 pm 
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I have read a lot about tapering today and would like to share something that I feel could be beneficial to people trying to get off suboxone dealing with RLS. I suffer with RLS horribly when not on suboxone and this is amplified when tapering. I read many posts of how people suffer RLS when cutting the dose and how some people think diet can help with the suffering while tapering. I find one rule to always be true not only for me but for my friends suffering RLS that I have shared this with also. I have had a few years experience with suboxone (only recently "officially" by prescriber) and find that when I am cutting my dose down (when I would be about to run out) an extremely low carbohydrate diet cuts the RLS almost completely out, key word almost. I am diabetic and have a semi-controlled diet. Im a carb addict also..lol. If I am tapering down and I do not stick with the meats and veggies, my RLS is amplified by 10. So, over time hearing my friends come to me saying that after meals or sweet binges the RLS flared while tapering and reading several people express the same here, I realized that it had to be the carbs. Very low-carb diet while tapering!!! I always have trouble sleeping when I cut my dose. Another trick I have come across is that taking one dose a day however much that may be, would be better taken 45 min. before sleeping to hush the RLS. Usually in the waking hours people find things that keep their minds and bodies busy. This makes the RLS less noticeable and easier to deal with. That changes once someone tries to find stillness, peace, and quiet. Everyone I have ever asked suffered more at bedtime w/RLS than in waking hours, suboxone users and not. Everyone is different and will taper differently. What works for me may not work for the next person. Normally I prefer to take two doses a day "says the addict in me", even though I know that the suboxone is effective for the full 24hrs. It seems to me that it wares off after a busy day and the RLS kicks in at night full force. I like to take 2mg when I wake because it helps with the pain and makes getting going in the morning easier. When tapering this comfort dose must be lowered and eventually must be cut out entirely. Then I take another 1mg at night so that I may sleep RLS free. When tapering I increase the night dose to 1.5-2 the same day I quit the morning dose, and is the only dose I will take all day. I have found a system that works for me but I would be unable to use this system if I did not adhere to the two things I have mentioned above.... low carb diet... and dosing before bedtime. I hope my experience can help just one person. Any info on RLS extremely welcome!!!


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PostPosted: Thu Feb 12, 2015 8:32 pm 
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I have RLS real bad right now. I have been on 2mg a day for 13 months and this past week I've only been taking 1mg and I feel really uncomfortable.


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PostPosted: Thu Feb 12, 2015 9:25 pm 
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What an interesting hypothesis! Darin91, are you willing to try sticking to a low carb diet to see if it helps you?

OP, our forum might be just the place to experiment with this if people are willing. If you notice someone posting about tapering or detoxing, you could definitely suggest for them to try a low carb diet. It makes sense that a spike in blood sugar could trigger extra movement, especially before insulin has a chance to neutralize the sugar. I hope you stick around so that we might be able to perform at least some anecdotal testing!

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PostPosted: Fri Feb 13, 2015 2:57 pm 
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First off I have a question for darin. Do you find it harder to sleep at night, with the RLS now that you have cut your dose?
I also hope you try it darin. After I realized this helped me, I couldn't wait to tell my friends. I have just become a member here and I thought it only right to share even if it just helped one person. Although I'm pretty sure some the suboxone savvy people here have already made this discovery, I couldn't find anything pointing it out. I pray that it goes well. Way to be encouraging Amy, I love to see the people here are so supportive of one another. It really makes me feel not so alone on my journey! Another point I would like to make is that maybe you should not eat 2-3 hours before bedtime. That way in case you do over do the carbs your system has time to burn them up assuming you are not diabetic. It is much harder getting rid of those carbs for us diabetics. Try as I may I just can't stay away(from those delectable carbs) lol. Please do let us know how it goes if you do try it.


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PostPosted: Fri Feb 13, 2015 4:52 pm 
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Interesting subject ALMOST. My wife has had a severe case of it since birth and got it from her father who drank a bit heavily at night to relieve the symptoms. My wife's is so bad that w/o medication it also affects her arms. She's been diagnosed as having one of the worst cases noted. For over 40 years she was told it was in her head. Then one day a company comes out with Requip, a medication for it. So much for the previous doctors she saw. She takes Norco for relief. Thank the gods I have Suboxone so I'm not tempted.

A little research turned up this article.

How is restless legs syndrome treated?

RLS can be treated, with care directed toward relieving symptoms. Moving the affected limb(s) may provide temporary relief. Sometimes RLS symptoms can be controlled by finding and treating an associated medical condition, such as peripheral neuropathy or diabetes.

Certain lifestyle changes and activities that may reduce symptoms in persons with mild to moderate symptoms include decreased use of caffeine, alcohol, and tobacco; supplements to correct deficiencies in iron, folate, and magnesium; changing or maintaining a regular sleep pattern; a program of moderate exercise; and massaging the legs, taking a hot bath, or using a heating pad or ice pack. A trial of iron supplements is recommended only for individuals with low iron levels. Although many people find some relief with such measures, rarely do these efforts completely eliminate symptoms.

Medications are usually helpful but no single medication effectively manages RLS for all individuals. Trials of different drugs may be necessary. In addition, medications taken regularly may lose their effect over time, making it necessary to change medications periodically.

Common drugs prescribed to treat RLS include:

Dopaminergic agents (drugs that increase dopamine), largely used to treat Parkinson's disease, have been shown to reduce symptoms of RLS and PLMS when they are taken at bedtime and are considered the initial treatment of choice. The U.S. Food and Drug Administration (FDA) has approved ropinirole, pramipexole, and rotigotine to treat moderate to severe RLS. Both drugs are generally well tolerated but can cause nausea, dizziness, or other side effects. Good short-term results of treatment with levodopa plus carbidopa have been reported.

Although dopamine-related medications are effective in managing RLS, long-term use can lead to worsening of the symptoms in many individuals. This apparent progressive worsening is referred to as “augmentation.” With chronic use, a person may begin to experience symptoms earlier in the evening than in the afternoon until finally the symptoms are present around the clock. The initial evening or bedtime dose becomes less effective, the symptoms at night become more intense, and symptoms begin to affect the arms or trunk. Fortunately, this apparent progression is reversible by removing the person from all dopamine-related medications. Another important adverse effect of dopamine medications that occurs in some people is the development of impulsive or obsessive behaviors such as obsessive gambling or shopping. Should they occur, these behaviors can be reversed by stopping the medication.

The FDA has approved gabapentin enacarbil, which metabolizes in the body to become gabapentin, for the treatment of moderate to severe RLS.

Other medications may be prescribed “off-label” (not specifically designed to treat RLS) to relieve some of the symptoms of the disorder.

Benzodiazepines can help individuals who have mild or intermittent symptoms obtain a more restful sleep. However, even if taken only at bedtime they can sometimes cause daytime sleepiness. Benzodiazepines such as clonazepam and diazepam are generally prescribed to treat anxiety, muscle spasms, and insomnia. Because these drugs also may induce or aggravate sleep apnea in some cases, they should not be used in people with this condition.

Opioids such as codeine, propoxyphene, or oxycodone may be prescribed at night to diminish pain and help to relax individuals with more severe symptoms. Side effects include dizziness, nausea, exacerbation of sleep apnea, and the risk of addiction.

Anticonvulsants such as gabapentin and pregabalin can decrease the sensory disturbances such as creeping and crawling sensations and nerve pain. Dizziness, fatigue, and sleepiness are among the possible side effects.


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PostPosted: Fri Feb 13, 2015 11:46 pm 
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Interesting article Rule, it confirms some of the things I had suspected. I have had RLS since I was a girl... I cant really remember when it started but I first noticed it in my teens. I got it from my mother. I can remember her kicking herself to sleep nightly especially when she worked long hours in the ER on her feet. I also move my arms when I am suffering from RLS, literally boxing violently. I would like to hear more of how the RLS manifests in your wifes arms. I am amazed to hear of some one else suffering this also, this is the first I have ever heard of anyone else doing so. So its not in my head like the Drs have been telling me ...interesting... I have severe seizure like activity while taking most of the meds used to treat it. Lyrica produced an all over skin rash. I have taken and can no longer take, neurontin, cymbalta, compozine, benadryl, and delsym all used to try and treat my RLS due to this seizure activity. So I have searched far and wide for something to ease the symptoms. The one non-opiate drug that came close to knocking out the RLS completely was Tramadol, that is unless my sugar was above 160. I was on it 6 yrs, even through out my pregnancies. I stayed on it for RLS up until about a year and a half ago. My prescriber quit the clinic and Tramadol has become a controlled substance so now you have to go to pain management just to get it. This was a problem for me, the clinics here do not take my insurance. RLS was my initial reason for stumbling upon opiate addiction in the first place...sad I know. I used to tell people that I was a kick boxer at night and that I only rested in waking hours..lol. I have had 2 mates in the past ten years and a big majority of the time they opted for the couch feeling guilty and ashamed for not being able to last the night by my side. I do have neuropathy, and when my sugar is up the RLS drives me up the wall. Most opiates make life bearable, but suboxone does that without the getting high part. My suboxone Dr says that the Tramadol isnt needed because Im on Suboxone so it is not allowed. Please tell me the characteristics of her RLS in the arms and legs kicking, punching, twitching, jerking, repetitive motion.... how does it manifest in her arms? I used to run my hands through my hair like crazy it seemed to quiet the urge to punch something. I know I sound like a mad woman and at times I have felt like one, but seriously I have never known anyone to have it like me, you know punching and in general thrashing about extra violently, arms and legs. Oh well I need to stop. I could go on all night about this ....Please let me know Rule. Thanks for the article!


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PostPosted: Sat Feb 14, 2015 6:43 pm 
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Agree - I think it's more than just carbs though. Carbs transition to sugars in the body. I think the base cause is sugars with a precursor being carbs. I'm a huge carb addict, most of my meals contain many. I'm going to look up low carb / low sugar and prep my food for a week while I jump. Appreciate your insight though. I think you're correct.

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PostPosted: Sat Feb 14, 2015 7:33 pm 
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I also agree ER that it is more than carbs and that carbs break down into sugar. Im an insulin dependant diabetic so I know all about the break down of carbs and sugar. I feel like at least some people will find this one simple action may help tremendously. I wasnt trying to suggest that this will get rid of the RLS completely nor that it will work for everyone, that would be silly. It does however help those of us who tend to overload on carbs especially when cutting down or going cold turkey. You know women look to carbs for comfort!!..lol. For my friends and I (all women) letting those carbs go when doing this changed things, it almost completely knocked the RLS out of the equation. We are all on our own journey and I have found some pretty awesome advice/info here. Ive been a lurker for quite a long while but just recently decided to register. I registered so that I could contribute, possibly helping someone else like the rest have helped me directly and indirectly. Best of luck! I really hope it works for you also!!! Please let me know.


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PostPosted: Sun Feb 15, 2015 6:00 pm 
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Hi Almost,

I'm very excited to read this post! I have also suffered with RLS since my teen years. I didn't know what it was called for years and was finally diagnosed with it after the new medications came on the market. I can remember trying to explain my symptoms to doctors time and again and they kept giving me medications for muscle cramps. LOL...obviously it didn't work.

Mine seems to be cyclical. Meaning I will go through months of severe RLS every night, legs and arms. And then I may have 6 months with only a few episodes. I suffered incredibly badly during all three of my pregnancies. It seems that the extra hormones in my body during that time made mine almost unbearable. But it has also proven to be terrible for me during any extended wd that I go through. Like you, I have only heard of one or two other people who have described having it in their arms as well as their legs. It's definitely a special kind of hell when you are suffering with it all night long for weeks and weeks on end. It's so awful to be so tired and not be able to fall asleep because of the constant pain and jerking motions of your limbs. The more tired you get the worse it feels and the more impossible it becomes to fall asleep. I would definitely love to figure out what causes it so I could avoid any future flare ups. Ropinirole helps me to some extent, but only enough that I may get a couple of hours of sleep instead of zero.

I just wanted to let you know you weren't alone with that particular symptom. I'd be happy to talk with you about it through PM if you want. :D

Thanks for the great advice here. I am definitely going to give it a try the next time I have a flare up.

Q

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PostPosted: Tue Feb 17, 2015 12:08 am 
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Hi Q,
If possible can you take me through how the RLS manifests in your arms, obviously in your legs its kicking and jerking. With me like I said above, it is like I am training for some major boxing event and I must train all night long... I am dangerous to those around me..lol. I used to find that when I would get the urge to violently thrust outward I would run my fingers through my hair(obviously not tenderly) but the sensation of my hair touching each individual finger seemed to make it a little more tolerable. I might do this 10-20 times in one minute, never really counted but for me it gave some relief. I also used to pace around inside my home endlessly for hours, often with my eyes shut. I would try to lay down,,,jump, kick, punch a while,,,, get up and walk again,,,,lay down and jump, punch, kick a while,,,,get up and walk ...you get the picture this would go on until my body would just give up on one of the laying down intervals or I took a benzo or opiate. I would still kick, jump, and punch through my sleep. Thank God for suboxone, as this works the best for me, although symptoms are not completely gone. If my sugar is up the suffering is so much worse, especially if I am cutting dose or going cold turkey. I am also suffering from ongoing, worsening neuropathy. That is why I am asking how it manifests in your arms. I would like to be sure on one side of the fence or other that it was neuropathy(worsening), RLS, or poss. a combination of the two(almost sure that this is the case). I guess I just need to hear it from someone elses perspective to see what is happening to myself more clearly. My legs still twitch and kick but not as bad as they did when I was losing feeling in them,.,now the feeling is almost entirely lacking. My hands are losing sensation now.,,, I find buttoning the boys shirts more difficult and not feeling odd little things that ordinary people take for granted. I know you said pm and if you dont want to get into it in these posts thats fine.... It might be helpful to someone else though. Thanks for letting me know you are there...Nice to know Im not completely alone on this particular subject.


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PostPosted: Tue Feb 17, 2015 4:24 pm 
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Yeah, the punching is the same with me. I have never had the desire to run my fingers through my hair, but I would have tried it had the thought occurred to me. When mine gets to that point I will usually move to the couch so that my husband can actually get some sleep. The only relief I can find is if I lay flat on my back and rock back and forth, side to side, extending and unextending my arms and legs. Something about the continuous movement seems to keep me from having the outbursts of kicking and punching. I'm sure it looks ridiculous. I have learned different things to make the leg pain tolerable over the years, but once the arms set in I'm absolutely miserable. There really isn't anything that I can take to make it stop for me. Benzo's or sleeping pills only make it worse. Opiates are the only thing that have ever given me relief.
I will get up and walk around the house, and do lots of stretching of my legs and arms to relieve it for a few minutes at a time. But, I usually wind up just being miserable for hours on end until I finally get so exhausted I fall asleep. Once asleep the movement continues, but at least I don't feel it. I don't know how the heck my husband puts up with me to be honest. He says I jerk and kick in my sleep every night, even on my good nights.

If you are dealing with this every single night, you have my sympathy. It is a vicious cycle, for sure. One bad night can start a snow ball of weeks or months of it for me. I am always worse when I get over tired, every time. So, when I have a bad night with it and don't sleep much I can bet the next night will be almost as bad unless I can bring myself to nap during the day and rest a bit. I have always wanted to know why I can go months without a flare up, and then have months where it bothers me every night. It seems like I would eventually figure out what contributes to it, but so far I haven't. Well, I do know that any kind of WD will set it off, and as I said before when I was pregnant it was really bad. Other than that, no idea.

I hope I answered your questions. If there was something else you wanted to know, ask away. :D

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PostPosted: Tue Feb 17, 2015 9:54 pm 
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Really it sounds as though Im hearing myself talk when you describe yourself... I also find that rocking helps. I believe its the controlled movements that help to counteract the uncontrolled ones. Im with you on that completely, hence the idea to move my hands and arms purposefully running my hand through my hair helps with the minute sensation of the hair through my fingers as a sort of distraction to the uncontrolled bursts. I also suffered more while pregnant. The doctors had me on hydros at first but decided that they were too addicting. They then decided I could keep the tramadol I normally took throughout the pregnancies, both! I have to say it did help the nights I wasnt sooo tired. If my feet hurt then I was gonna twitch and jump for sure (the over tired part) They were expecting to detox the babies but they showed no signs of addiction. I dont suffer daily, but I too when having had an exhausting or stressful day suffer worse. Stress and anxiety are one of my triggers. My biggest trigger is my uncontrolled blood sugar. If I am going through wds I make sure my diet is on point, or the nightly workouts will send me to the nut house. I guess now you can understand why the need for a stash...hehehe. Suboxone keeps me normal for the most part and I cant bear the idea of going back to the RLS full time. I am an addict so I would prefer not to be on morphine, or oxys or you know whatever. I made an agreement with myself this past May that I didnt want to be on the "high-chasing" rollercoaster anymore. I want to be the best mom possible and I dont feel that I can do that high or suffering RLS constantly. I finally got into see that first suboxone Dr. and he was on a power trip I tell ya. I could sense that he didnt give a crap about his patients,,, I was treated like I was the village idiot. The Dr. I have now actually cares about the outcome. He is very strict but has everyones best interest in mind. I see so much of a difference in him and the other jerk I seen. My Dr. has a plan to get anyone who enters the program off in a years time so I need to find someone who will prescribe suboxone as a maintenance dose. Any suggestions on who or what to look for whilst doing that? I live in rural West Tn and I have state insurance..my options are limited. You have been very nice to say the least by explaining how things are for you and in listening to me cry baby about this very unusual problem (apparently less unusual than I thought) :o and I would like to thank you. Any advice would be nice. Lets keep in touch. Thanks again Q! :D


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PostPosted: Wed Feb 18, 2015 4:17 pm 
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Check your PM folder. :D

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