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The RLS too group


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Hi there,

 

Thought I'd start a group for people like me—people battling chronic RLS (or WED/Willis Eckbom disease.) I've been reading so many stories about the way many people here suffer through phases of RLS, mostly the anxious jitters, either from the withdrawal or another medication. I couldn't find anyone like me, so I thought I'd put this out there and see if anyone comes! ;D

 

I was given clonazepam by my neurologist last year. I had been on pramipexole for twelve years, and it completely stopped my RLS—until it didn't. I was told to cut down slowly on the pramipexole, and given gabapentin and Tylenol #3 to help me. The withdrawal was awful; no sleep, no help from the gabapentin, and very little from the Tylenol #3. I would finally sleep around 5:00 am or when the sun came up. At least I could sleep, though. Looking back, those were the good old days. I thought that was the withdrawal from hell until this baby came along,

 

The doctor then tried pregabalin, horizant (a long-acting gabapentin), clonazepam and Xanax all to no avail. I went to the Mayo Clinic, and they recommended 20 mg of oxycontin (a long-acting form of oxycodone.) I really didn't want to take it.

 

So we tried Tramadol, short and long acting. I was a zombie and still couldn't sleep. I ended up with four Tylenol #3 pills, 1.5 mg Clonazepam ant a little bit of pramipexole. I finally broke down and said to my neurologist, let's do the oxycontin, but he only gave me 10 mg, half what the Mayo Clinic recommended. Through a snafu, he also gave me two 5 mg of oxycodone, which I tried not to take.

 

I was told at that time to get off the clonazepam. I went down quite quickly at first, but then all hell broke loose and I fell into the fiery pit of withdrawal; lost 40 lbs, was shaking, thought everything around me was death and destruction couldn't watch TV or listen to music and was so depressed I didn't want to live. Since I had no idea why, I kept titrating down on the clonazepam. When I hit bottom and called a hotline, suddenly the medical community around me snapped to attention.

 

I ended up with a psychiatrist for meds, a counselor, a sleep psychologist, a new GP and a pain specialist. The psych put my on mirtazepine which made my legs go crazy when I titrated up, so I stayed low on it. Since I was still severely depressed, she tried one med after the other and they all left my skin burning and heightened my anxiety. If I could have, I would have gone to bed and lived there, but my legs were so jazzed I had to stay up and walk around. Kept myself busy: Laundry, walks, cleaning everything. I mean everything. Used a toothbrush to clean the grout in the bathrooms! I was so depressed, so anxious and my legs were so jazzed I couldn't stop moving.

 

I finally realized that this was benzo withdrawal about two months ago, after I'd jumped. I have no idea how taking all the other medications added to the burden on my CNS but I believe they must have. I've been off since August 30, 2022, almost 2.5 months ago, and I'm finally getting better. I'm at about 65%. I'm sleeping at night but can't stay in bed in the morning; I have to get up. Naps are still toxic for me. Evenings I have to take something so I can sit and eat dinner or I'd be walking all evening because my legs are still jazzed. Days my legs are much better, but my spirits are low. I'm a bit isolated, which I think adds to it.

 

It's a conundrum. I try to get involved in things but still have unexpected bouts when my anxiety ratchets up to the clouds, and I have to retreat. So for now I'm trying to patiently let my CNS heal and not get mad at myself for not doing more (which is a struggle!)

 

I was worried that the oxycontin would slow my healing, but apparently they use different receptors. IDK, but there would be no sleep and no rest or sitting without them.

 

Anyone else have any experience dealing with both RLS and clonazepam W/D? Love to hear from you if you do!!

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You are not alone. I jumped cold turkey from klonopin three months ago and insomnia and RLS have been horrible. On the K P's for years. My mind is so blurry, I can't even remember when I started on them. My doctor retired and I had to seek out a new doctor. She has prescribed me Ropinirole which has worked with the RLS and I sleep a bit. Stay strong. We can do this.
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Glad you're at least getting some sleep! Jumping cold turkey was really brave of you! Three months out . . . we're just about in the same time frame. You're ahead of me by 2.5 weeks.

 

It's not surprising that RLS kicks in with all that jittery anxiety. Ugh. I hear you about the brain fog. I had brain fog for months and thought it was the sleeplessness. Nope.  The good news is that the brain fog is finally lifting. I even found myself correcting my husband and being right! He's been my mainstay for so many months, taking me to the doctor's, the pharmacy, the psychologists and walking with me through all of it. I couldn't remember what the doctors or therapists were telling me—good thing he was there with me! But it's so much better now.

 

It's weird the way things lift so slowly you don't realize the improvement. It's happening, though. For me, afternoons are the worst. There's something about eating lunch that sets me off, or maybe it has nothing to do with lunch. IDK. But mornings are a bit better. I used to wake up and inside I was just trembling. If I could have slept those months away I SO would have. But the RLS keeps me moving. Between RLS and anxiety, getting busy and absorbed really, really help. I don't always get there because I don't have enough to do that's compelling and pulls me in. Seriously, I've even taken a toothbrush to clean grout in the bathrooms, and all three have tile on the floor and walls. That's about all my mind was good for anyway, so mission accomplished and wahoo, the bathrooms are super clean.

 

I wish I could take ropinerole but it's in the same class as Mirapex (pramipexole). And once you've augmented on it, you can't use that class of drugs again. A lot of people take what's called a 'drug holiday', which is a week off, just to make sure they don't augment. If I'd known about it, I would have done it! But it's one of those things doctors aren't well versed in. You don't have to worry about that, because you just started it and that's good. You're in a good place for healing. I can't believe some people can't sleep at all. It hurts my heart for them.

 

Yes, we can do it! You're such a brave soul for going cold turkey. God bless your every effort, and bring you back to yourself fast fast fast!!

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Thank you so much for your kind words. I felt I had to jump because I am 66 and want my time left to be as clear headed as possible. My husband has been as supportive as he can be. But, he believes that withdrawal is "all in your head".... Really?  Anyways, I will continue to take it a day at a time. Also take magnesium tablets. Afternoons are hard for me too. Today I am going out with a friend. Don't want to do this all, but I have to reconnect with the world.
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Good for you! Me too, I started going out just to reconnect, not because I wanted to. I mean, theoretically I wanted to. But the actual getting ready and going, and doing different things was just hard at first. No joy in it at all, except that it passed the time and distracted me. But now it's better; I actually enjoy myself (after a warm-up period). No, strike that. I don't know if I enjoy myself as much as I enjoy others.

 

You're husband is almost right (not that he means it literally!) It IS in our heads, and our CNS, which is currently taking our head in directions we can't control. There's a part of me that's glad even my husband doesn't know what it's like, or how bad things have gotten. It would freak him out, and probably your husband too. The fewer that have to suffer, the better. But I think it would be nice for you to be affirmed by your husband, even if he doesn't fully understand. This is not us being psychosomatic and making things up for sympathy or to get out of things.  This is our brains, scrambling for a new homeostasis and taking us for a wild and terrifying joy-less ride. We're holding on and waiting to get off with every fragment of our souls. It's happening.

 

Me too with Magnesium. I also take vitamin D, and a calcium multi pill. And I drink water like a maniac. I'm 69, so not too much older than you. I hope you have the kind of time that takes you out of yourself and makes you feel like you again. Even if it's just for a few moments, that will help, because it's a signal that more of those moments are on the way. Today I didn't feel absolutely awful until around 4:00 pm. I struggled earlier in the day, but things were doable. I think that's a step in the right direction! It's very dreary and dark here today, which makes it hard to get going and walk or exercise. Sunny, nice days really help. Oh well. Today, the treadmill might be my best choice.

 

You take care!!

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You make a good point regarding my husband. I don't want him to suffer. It's important that he has stayed with me and been calm when I am upset with this withdrawal. My visit with my old friend was actually fun. Had trouble sleeping, but did drift off here and there. Am knitting, which helps keep my hands busy and following a pattern. Thank you so much for being here. :)
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I wish I knew how to knit. I'm still casting around, looking for things to keep my mind busy and occupied. Glad to hear your visit was fun—whoop whoop! The more fun the better.

 

Wishing (and praying) for better sleep for you tonight!!

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Really? That's fantastic! Sounds like you have a great library, and some get-up-and go. Glad you got some decent sleep. I slept for about 6 hours straight, which I rarely do, so me too!

 

I struggle every day, trying to find things to do and settle into a routine. Last January when all of this tapering and the withdrawal symptoms started, we were still in semi-lockdown. I had a small Etsy business but I couldn't get supplies easily, and it sort of seeped away. Orders were few and far between, and I had such brain fog I was glad! Seems as if the only thing I did was go to the store and clean and write letters to two of my grandsons. I went to Arizona for ten days with my husband, and stayed with my sister and brother-in-law at an airbnb in March, and it was good to get a little sun! I was able to get some sleep when I was there.

 

But when I got home in April and continued titrating down, I found myself for the first time actually nervous at the doctor's. A sudden anxiety dropped on me as I sat in a neurologist's office. The typical dull office lighting looked weird and grim. From that point on, the symptoms just fell on my like weights. I tried a low oxalate diet (don't ask—it's for kidney stones but some people found it helps their RLS!) My weight plummeted. Everything seemed so empty and hopeless that I was at the end of my rope.

 

Here I am, going on and on again about the past year. I guess what I'm trying to say is that the brain fog and low spirits sapped me of any interest in things, and I sort of shuffled through the days. Being with others was the highlight of my week. My husband and I are both recently retired. Retiring during Covid was peculiar. We couldn't take anything up or find new interests, because everything was closed. Between Covid, retirement, getting a grip on my RLS and benzo withdrawal, there were so many disruptions that I still haven't gotten a decent routine going. Evenings are pretty good; I've got a routine at home and some regular times with friends, mainly Bible studies, but they're great. Mornings I don't feel rotten any more, but I just don't have any reason to get up other than to eat and sit under my light!! :idiot:

 

I'm struggling with the afternoons most of all, partly because that's when I have the burning arms and legs and the jitteriness. That's currently my nemesis. Sometimes I can't sit for long, while other times I can.  :( The inner jitteriness seems to set off my RLS.

 

But all in all things are so much better than they were! Anyway, thanks for responding to posts! I appreciate it so much!

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It's so hard at times. Beautiful day here. I'm trying to get going with my life and just don't have the energy today. At least I can read and follow some shows on TV. I have a flat feeling too. We have to keep going forward. My husband and I are retired. He is in constant motion, which is not easy to be around. I just him be.
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Can you easily sit and knit? I was just wondering because I'd love to start some kind of hand work. Sometimes I just get so jittery I have to move.

 

I'm impressed that you can both read and knit. I can read in the morning; love biographies, history and non-fiction. It's hard to find books that are both highly readable and compelling. But so far, the afternoons (after lunch) are tough times. Need to move no matter how tired I am or how ill I feel. It's probably good for me. Otherwise I'd be in bed with the covers over my head!

 

You'll be able to get on with your life; it's gonna happen! From where I"m sitting you seem to be doing SO much better that most. Anyway, I'm impressed!

 

 

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It's not easy to sit and knit. I'm sorry I am sounding rather pompous! For years, even before benzo hell, I was willy nilly about my own direction. I do go to bed early and try and just breathe steady for a few minutes. Lucky to not have to work these days. Not sure I could handle the kind of work I did now. My drinking behavior was secretive and sad. Oh, the years wasted. Don't have to go there anymore. 8)
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Believe me, you are not sounding pompous at all!  When I look at the list of meds you were on and off of, it would be impossible NOT to be impressed. Sure, of course the things we do in secret are things we feel badly for, or we wouldn't do them in secret. There is usually a reason for those things, though. My son had panic attacks and anxiety, and used Kratom constantly. He kicked it and found other ways to address his anxiety. I have and armload of family stories of alcoholism and addiction. And of healing. All of them went through a LOT, both before and after. Frankly I think of the ones who went there and back as the bravest ones. Not only did they have to bear the reasons they turned to drugs and alcohol in the first place, but they also had to carry the pain of addiction. And they did, and were better people for it. Yep, you don't have to go there anymore!

 

I don't 'feel' this way, but I trust God that nothing is ever wasted. It feels like it though! Right now I'm feeling that jitteriness and angst and am fighting all the negative thoughts that come like arrows. I'll be better later in the evening, so that's one good thing! And I do believe that I am healed. I just don't see it yet, but I will.  I'm on the treadmill because I just can't sit. I tried working on a puzzle with my husband and was able to do that for a while. Can't nap, but that's probably a good thing; I'll sleep better tonight. Thank God I have a treadmill. It's about 30 degrees outside. This will fix the jitteriness and I'll get some exercise too.

 

I can't tell which sensation in my legs is jitteriness and which is RLS. I'm guessing the meds are taking away the RLS and this is benzo jitteriness. Ugh. Still, every day it's a bit lighter, and I have more and more good times.

 

You take care, Gracced333!

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  • 5 weeks later...

It used to be the the evenings were more peaceful for me. I felt a bit better. Now the burning has started in the evening, and since the bu rning's in my legs, it's hard to tell if it's RLS or the standard benzo jitteriness. When I also get a huge influx of energy and have, absolutely have to move my legs, I know it's RLS.  It usually comes on the heels of the jitteriness.

 

Ugh. I hope this timing settles down soon. I don't like it. And I'm soooo tired from all this Christmas stuff! I just want to sleep for a thousand years!!

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  • 1 month later...
I too have the burning and restless leg.rls started after upping dose of,sertraline and also was taking 19mg diazepam at night.currently tapering off diazepam.think have been too quickly as been reducing 1 mg a week.seems that 2nd night of a taper I get horrendous restless and pain everywhere.havent had a night without some twitches .so glad I am not alone with the rls.i use magnesium spray on my legs at night.does help a bit.xxxx
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So sorry you're going through all this! I went off sertraline years ago and that started my RLS. I was fine when on it: think I went down too fast. Yes sometimes the burning gets my legs going too! I walk on the treadmill, work on a project or clean; getting my mind off of it helps. Some days it's harder than others, that's for sure!

 

Yah I think magnesium helps! Heard an Epsom salt bath can help too. (I read that Epson salt is Magnesium sulfate.). I know it pulls heavy metals out of your system and is a good detox. I've never tried it but I found some in the bathroom and am considering it! So glad the spray is helping a bit!!

 

 

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