Help please, I've lost all perspective

[[Ho...]]

I'd been having some good hours here and there; went out to dinner twice and had a good time and was able to enjoy family and friends. I don't know if there is a backlash from it but I feel like I've been pulled under now. Mornings are okay but afternoons, my skin burns, I get super jittery and can't sit, my thoughts go dark and I can hardly watch TV again or find the energy to distract. I'm exhausted and depressed. I walk at a snail's pace and am so disappointed in myself that I can't pull it out!

I'm about 13 months off and was so hoping to see some more light at the end of the tunnel. 

I was put on low dose opioids for RLS about 18 months ago. They're for RLS. I went everywhere for help but only the Mayo Clinic in Rochester was able to help. 

 I keep wondering if the afternoons are bad because I'm slightly withdrawing from the opioids (I only take it at night). Some days there is more burning, some days less. The doctor says it's unusual and recommended more opioids during the day, but he won't prescribe! He sends me to a doctor in my own state. Unfortunately the prescribing doctor doesn't know anything about opioids. 

Everyone here will probably tell me to get off of them. I didn't want them in the first place but the medicine that had been prescribed, after 13 years, was backfiring and causing the RLS. So I was stuck. I couldn't go to plays, movies, friends' homes or out to dinner. I thought that was awful. Little did I know how much worse things could get.

Is there anyone here who can advise me? I'm in turmoil and there is nowhere else to turn! 

[[Ho...]]

I could really, really use some help right now. I feel old and used up and desperate for hope.

[[...]]

Is RLS just when your trying to sleep? Or do your legs move at other times.

I've seen commercials. And I've had a leg jerk once in a while when drifting off to sleep. But I didn't think it needed a pill.

Just curious...tx

[[Ho...]]

No, when your leg jerks it's something called a myoclonic jerk, I think. That's something many people do, say, just before the onset of sleep.

I have RLS at night. It feels like worms crawling or some kind of major irritant, so you have to move. It's just inside your legs.

I never had it during the day but when I stopped the benzos I had something close to it during the day. Now it's sporadic in the day, so I guess that's an improvement.

[[...]]

Sounds like akinasia of the leg...right?

[[Ho...]]

Kind of yes! I have that jitteriness since benzo withdrawal that I thought was from akithasia or however you spell it. RLS is more pronounced and compelling you to move, and all in my legs, nowhere else. It's been a beast, but now that I've been through benzo withdrawal, it seems tame. I think I'd rather stay up half the night and have myself back, but it's not a choice anymore.  

[[je...]]

If the first meds for RLS are not working anymore, I can't imagine that opiods will work longterm. I think you'll develop tolerance. I don't know anything about RLS. I assume you've exhausted all options?

I found this thread. They also talk about opiod use. 

 

[[Ho...]]

Thanks @[je...], I appreciate the response very much! I am afraid of tolerance too, but the folks over at RLS.org tell me that the oxycodone rarely causes tolerance in this case because it's not technically for pain. They also state that the dose is very low, at which rate people don't tend to hit tolerance, which I have no idea is true. If I find I need more, there is a very low threshold, and put simply, I won't be given more.

Yes, I've exhausted all options. There are other opiates, however, and they start cycling you through them, which I hope never happens. Thank you for the thread: I read through it. All of these people had milder cases that, thankfully, faded away. It's thought that the RLS meds I was on for years altered my brain, which is terrifying but what can I do now? Just try to figure things out on my own, I guess. I was put on clonazepam for the RLS, so that's why I'm here.

I'll just keep trying. I'm in a pickle! 

 

[[je...]]

I'm so sorry. I wish I could be of more help other than moral support. 

[[pi...]]

@[Ho...],

I have to say I’m surprised they give opiates for RLS.  I’m not sure about the tolerance issue but I know there is a dependency issue which can develop quickly with opiates. After my surgeries they gave me a very small amount as well as a script for narcan. Luckily I hardly took any and relied on ice instead. 

I know a previous admin from long ago had RSL and was also put on benzos for it. Ultimately she found an alternative medication but I’m sorry I do not know what it was.

[[Ho...]]

Thank you @[pi...], I know it's off the grid but the medication I was on for years started doing what benzodiazepines do; it started causing the symptoms it was supposed to alleviate. So I went through a tough withdrawal period which was bad, not nearly as bad as this though. I ended up consulting with the Mayo Clinic, and no one goes to the Mayo Clinic unless they live nearby or are in desperate straits. They are the ones that put me on it. You have no idea how dark that makes me feel. I've already tried all the alternatives, but I appreciate your reply!

[[Ho...]]

4 hours ago, [[j...] said:

I'm so sorry. I wish I could be of more help other than moral support. 

I'll take the moral support any time! I was able to contact someone at RLS.org and the opioids aren't known to affect GABA receptors, so at least that's a weight off of my mind.

For the past few weeks I've been having a lot of trouble in the middle of the day. Most of the day. Burning skin that sometimes feels freezing cold, which was a symptom that left for a while. Same with sweating right after a wave of anxiety hits. I'm kind of at a low right now. Not kind of. I guess it's just the same old stuff I thought was going away. It's also a time when everything bothers me; most food, most TV, most reading and I'm dizzy & tired as heck. I was starting to feel a bit better, too. I was painting a bit too, but that's really hard. I'm over a year off! I thought I'd be further along. So I'm really sad and bothered.

[[je...]]

I know how frustrating this must be. I'm approaching a year and I thought I would be much further along. All we can do is keep going.

[[or...]]

@[Ho...] one of my buddies on here in years past developed RLS. As I recall, the condition really bothered him at night as he had to constantly move his legs. His neurologist prescribed gabapentin. They had to tinker with the dose, but eventually they arrived at a dose that controlled the RLS yet spared him some of gabapentin's worst s/x. (I myself took gabapentin for a foot neuropathy, so I'm familiar with the good and bad of the drug).  I'm not advocating for this . . . just wondering it the drug would help you. 

So sorry for you, Hotcold. 

[[Ho...]]

Hi there @[or...], thanks for writing! We did try gabapentin. I wish that it had worked! We kind of ran through all the options. Mine is familial, meaning it runs in my family, not idiopathic (when it just crops up.) But I'm the only one on anything. It's a bummer. But I really, really appreciate the thought!

[[Ho...]]

18 hours ago, [[j...] said:

I know how frustrating this must be. I'm approaching a year and I thought I would be much further along. All we can do is keep going.

I just read a post by Pamster telling someone that 1-2 years is the norm, dependent on how long you were on it, how old you are etc. So I've tried to readjust my expectations. Today I'm feeling a bit better. Agreed; we'll just keep going and try not to lose hope! Thanks for writing, @[je...]!

[[An...]]

1 hour ago, [[H...] said:

Hi there @[or...], thanks for writing! We did try gabapentin. I wish that it had worked! We kind of ran through all the options. Mine is familial, meaning it runs in my family, not idiopathic (when it just crops up.) But I'm the only one on anything. It's a bummer. But I really, really appreciate the thought!

Who in your family has it? Have any of these ppl found anything that helped them? So, are you saying this really has little to nothing to do with your post benzo w/d?

[[...]]

Everyone is different. And it doesn't have to be 2 years.

[[Pa...]]

[[Ho...]]

47 minutes ago, [[A...] said:

Who in your family has it? Have any of these ppl found anything that helped them? So, are you saying this really has little to nothing to do with your post benzo w/d?

Hi @[An...], I wouldn't be here if it weren't for the RLS. Clonazepam was part of the cocktail of meds my doctor brewed up to ameliorate my RLS. Everyone here seems to have been put on a benzo for a different reason. A lot seem to have had trouble with anxiety, but not everyone, and not me. I can't say for sure, but it's possible that my RLS was triggered by coming off of Zoloft too quickly in 2007 or thereabouts. Before that time, I only had one instance of it during a long car ride. My daughter has had a couple of instances, but only when she was expecting a baby. My niece has had a few episodes when she's under a lot of stress, but not that often. So it's familial, but you can see that it's not severe in my family, so no one has needed treatment. Mine, though, is severe.

During my benzo withdrawal, the lines got blurred. I thought and still think that I had jittery benzo sensations that made my RLS worse, because suddenly, it would strike at any time! Couldn't sit with friends, couldn't sit to eat dinner, couldn't even sit in the bathroom. It was in my arms and hands too; I was wringing my hands all the time. Couldn't take a bath because I couldn't lay down that long and had to shower. 

I guess I'm often in a position when I am trying to tease out, is this RLS? Is this a symptom from benzo withdrawal? I asked a doctor about it and he suggested I go on opioids 24/7. I said thanks, but no thanks. I take as little as possible. Honestly I've not even been tempted. But the bedtime dose gives me one hour of peace before I fall asleep, and I've been thankful for that. It's not a particularly restful sleep and sometimes I dream of coming off of everything, but that's an RLS issue and I'm sure I've talked long enough about it!! Sorry for nattering!! But it's so nice to talk about something I can never talk about!

[[Ho...]]

48 minutes ago, [[P...] said:

Hi @[Ho...], I didn’t realize you were in so much distress, but I’m glad to see you’re feeling a bit better today.  One of our former administrators had RLS, I wish I could remember what she did for it, hey @[pi...], do you remember what Challis used? 

Hi Pamster, 

Thanks for stopping in!! Love hearing what others have done. I'm still wishing I could be 100% med free. Can you imagine? Not having to make sure I'm in town for refill times. (These meds are controlled and there is always a problem getting the prescription filled.) I can't move to another state without making sure I have a doctor who'll prescribe for me. So I'm motivated, that's for sure! I don't think I'd have a problem getting off of these. Not after this experience! 

You never know. Good things can happen. 

[[in...]]

Dear HotCold,

My psychologist has suffered from RLS for years.  He was on Klonopin for several years but it did not help long term.  He is now in a clinical trial at a major medical institution snd they have him on Buprenorphrine which is experimental and is working very well. FYI

[[pi...]]

On 01/10/2023 at 20:14, [[P...] said:

Hi @[Ho...], I didn’t realize you were in so much distress, but I’m glad to see you’re feeling a bit better today.  One of our former administrators had RLS, I wish I could remember what she did for it, hey @[pi...], do you remember what Challis used? 

Hi @[Pa...], I wish I remembered what Challis took for RLS. 

[[Co...]]

For RLS: benzos; opiates; Parkinson's treatments (Requip & Pramipexole); Gabapentin; Lyrica; and some others too. I don't recall what @[Ch...] took.

[[Co...]]