Severe RLS and quitting opiates

[RLS40]

Hello, my first post not sure if this is the right place to post this, but seemed like a fitting place.

I have been on pain meds for many years for many issues. I have also had RLS my whole life, not the same as WD RLS. I complained to my parents my whole childhood and it was always diagnosed as growing pains. It has affected my life greatly, but I just dealt with it as 30-40 years ago, nobody knew what it was. I cannot sit still, cannot sleep, I cannot watch a movie, cannot fly on a plane and so on. I get it so bad it goes down my arms. It is horrible, It is like someone is inside me trying to get out it is misery.

I had a surgery in my 20's and received pain meds and the first thing I noticed was that I no longer had the RLS symptoms, it was great. Eventually I was no longer prescribed pain meds and I just shook it off and went on with my life. In later 30's I again had major surgery and again received pain meds and it was great that it fixed my RLS which had gotten worse. Eventually the doc cut me off and they sent me to pain mgmt. I have been going for years now and it has come to a point where I might not be able to get pills anymore and at the same time I don't care as I want to get off of them as they are ruining my life and marriage. I have tried to get off of them many times and only last a few days before I go nuts and cave in and take them again. I know mentally I can get off them, I mean I know I can handle the withdrawal and not taking pills, but it is the RLS that is going to get me. It is going to be worse than ever. The worst part is I am in severe pain and just had another injury that is making it worse. I am going to see my family doctor this week and see what I can do about getting off of them, however I may have to go cold Turkey if I get cut off this week, I am not sure if that will happen, which is not my fault, it is a long story, but has to do with insurance reasons, not to mention people coming down on me. I have done nothing wrong and have done everything legally, but I know states and insurance companies are coming down on medications and it is getting harder and harder to get meds. I am scared, this is all coming at my favorite time of the year and I am not ready for it and the worst part I am going to be in terrible pain on top of it all. I have tried Gabapentin and adds a little relief, but it make me crazy, I don't want to be on it long term.

Anyway, I am just looking to find any other RLS sufferers that have found a way to get off of opiates and have a normal life. What have they done? I plan to see a neurologist in the upcoming weeks, but I am sure there is nothing they are going to do, but give me false hope as I have tried the Requip and it does not work. I just want to have my life back again. I just sit around, I don't want to go outside, I don't want to talk to people and so on. My wife is not happy, I don't want to have sex anymore and don't want to go out and do anything anymore, I know she is getting tired of it. I use to enjoy so many things in my life and pain meds have just ruined my life, but on the other hand they have gave me freedom from the horrible pain and restrictions of RLS. Anyway thanks for reading and would appreciate any help or advise.

 

[Jabberwocky]

I was going to suggest Requip, but I see you tried it. Have you tried gabapentin, baclofen or pregabalin? Those three meds would all help with RLS symptoms. How about using something like Tiger balm, like really massaging it into your legs, right after a hot bath or shower and right before getting into bed? That really helps a lot when I have RLS bad when I'm kicking, so it may also help you. Tiger balm is some good shit.

What city or state are you located in? I ask only because I might offer meeting suggestions (Against the Stream, for instance). Do you have a therapist? One just for yourself, a different one for you and your wife?

 

[VastEmpty]

RLS -

Im so sorry to hear about your pain. That sounds awful. I have a severe bladder condition that causes my pain - it's autoimmune, and awful. For me, it is nagging pain, like I actually FEEL my bladder, all the time. I don't think normal people can feel their bladder like they can their arms and legs. It's always there. And it feels like I have a bladder infection 24 hours a day, some times/days more than others, but all the time to one degree or another. It sounds like the same kind of constant pain you have, just in your legs.

I dont have any advice for you, unfortunately, but you should be super honest with your doctor about what you think might be the cause of you not being successful in your attempt to quit. Tell him how bad this shit is for you. I'm sure most people think RLS...how bad could it be? So tell him straight out is my advice. See if there is anything he can recommend.

You are on the right track, but you need to make sure you are quitting because you want to. I'm not sure if it works any other way. This crap works really well for a long time, long enough to trick us into thinking that it is perfect. Then when you start to notice some physical or mental deterioration, the last thing you think it could be is your perfect pills. They turn on us every time. Eventually.

Best of luck, RLS! We are always here if you are in need of encouragement!

- VE

 

[MrRoot]

I've been suffering from RLS for a long time and when I am not on opiates I use pramipexole and it helps even in smallest dose (some micrograms). You might give it a try after consulting your Dr.

 

[RLS40]

I was going to suggest Requip, but I see you tried it. Have you tried gabapentin, baclofen or pregabalin? Those three meds would all help with RLS symptoms. How about using something like Tiger balm, like really massaging it into your legs, right after a hot bath or shower and right before getting into bed? That really helps a lot when I have RLS bad when I'm kicking, so it may also help you. Tiger balm is some good shit.

What city or state are you located in? I ask only because I might offer meeting suggestions (Against the Stream, for instance). Do you have a therapist? One just for yourself, a different one for you and your wife?

I have tons of Gabapentin. The last time I went off for a few days I used Gabapentin and it may of helped, but was not a cure not to mention I took a lot of it and lost my mind. I stated doing things and could not remember doing them like walking into a store and walking out with nothing. Never tried Tiger Balm, will ask my wife to get that for me today. I still have meds but will run out by next weekend if I get cut off, but probably will not happen this month, but cannot rule out next month. Have to wait and see. Thanks for your reply.

RLS -

Im so sorry to hear about your pain. That sounds awful. I have a severe bladder condition that causes my pain - it's autoimmune, and awful. For me, it is nagging pain, like I actually FEEL my bladder, all the time. I don't think normal people can feel their bladder like they can their arms and legs. It's always there. And it feels like I have a bladder infection 24 hours a day, some times/days more than others, but all the time to one degree or another. It sounds like the same kind of constant pain you have, just in your legs.

I dont have any advice for you, unfortunately, but you should be super honest with your doctor about what you think might be the cause of you not being successful in your attempt to quit. Tell him how bad this shit is for you. I'm sure most people think RLS...how bad could it be? So tell him straight out is my advice. See if there is anything he can recommend.

You are on the right track, but you need to make sure you are quitting because you want to. I'm not sure if it works any other way. This crap works really well for a long time, long enough to trick us into thinking that it is perfect. Then when you start to notice some physical or mental deterioration, the last thing you think it could be is your perfect pills. They turn on us every time. Eventually.

Best of luck, RLS! We are always here if you are in need of encouragement!

- VE

I have a failed knee replacement which has spawned many other problems including my back where I have multiple herniated and bulging discs and one slipped disc that is hitting nerves and is running down my legs. I also have issues with my feet. On top of it all this damn RLS. Like I said going to my family doctor tomorrow to ask what I should do, I intend to be honest. It is going to be hard I know, but I knew there would be a day that these meds would end and it may be that time. Like I said as much as I will miss them as they get me going I can handle not taking them, it is just going to be my RLS that will kill me. I will have to combat with that the rest of my life. It is probably going to be worse as my mind is going to make it worse. Thx.

I've been suffering from RLS for a long time and when I am not on opiates I use pramipexole and it helps even in smallest dose (some micrograms). You might give it a try after consulting your Dr.

Have not tried Pramipexole yet. I will research it and throw that one at the doctor. Thank you.