What next?

[jy13131]

Hi
I am new to your board but unfortunately not new to RLS. I have had sporadic episodes since childhood. It has always been exaggerated when I took cold or sleeping medications. I only had to take medication for it beginning about 4 years ago. I took Klonopin almost nightly but I am in recovery for addiction now and this is not an option. I switched a year and a half ago to requip and it works but makes me feel icky when I take it. Occassionally it makes me REALLY ill and I vomit. It happened one time when I took one so that I could see a movie. Needless to say, I didn't get to see the movie. I am interested in getting off the requip. I am afraid that my body has become so used to the requip that I will get symptoms when I might not otherwise. I want to at least see what my body in a natural state does. HOW DO I GET OFF THIS STUFF??? I have not had a night without RLS in almost 4 years.
I appreciate the support and any information shared!

[Betty/WV]

Hi JY: Welcome, but sorry you are so miserable. I certainly understand. You need a doctor to help you get off the Requip. I have had that "bully" RLS for 30 or more years. I am now on Mirapex and trying to get adjusted to the dosage. But I am sleeping for the first time in years.

What anyone on this site will tell you is to get informed. And this is the place to do that.

Go to the index and you will see a heading something about new ones to the board, and when you click on that at the top there will be a place that says "stickys" when you click on that there will be alot of good information. Just cruise around this site and find out all you can about RLS and meds.

It is totally amazing but there is a Dr. Buchenfrer, he is in Southern California and has written many books on RLS. You can email him and he will answer any questions. He usually answers within hours. His email address is somno@earthlink.net. Just tell him what you said in your post and see what he answers. I have emailed him twice and I just can't believe such a doctor exists. But he does. I think he used to be on the board for the RLS Foundation.

I wish y ou the best, and this is a wonderful site, with wonderful people who are so understanding. It has helped me so much. There have been nights when I haven't slept a wink and I would stand up in front of the computer and pour my heart out. (I stood up, because the RLS wouldn't let me sit down.)

So, don't give up. Get informed, email Dr. B. and if you don't have a doctor that will help you, try to find one. But I am sure Dr. B will help you get started. Take care JY and please let me know how you make out. I will be pulling for you. BETTY/WV

[Neco]

I know you may not consider this as a good option.

But you may find better success getting treated with Methadone or Suboxone.

Many of us here take methadone and get great results, and at least one person that has visited the board has commented that Suboxone is working great for her.

I am also a recovering addict like you, although I was addicted to opiates instead. I don't know where I'd be right now without methadone. If either Methadone or Suboxone are available options for you, either through your doctor (they can prescribe Methadone in 5mg tablets, possibly even Suboxone) or through possible county services (you can likely get Suboxone from them) I'd urge you to consider it.

Opiates are one of the best treatments for RLS, and since you can't take benzo's anymore, and the Requip is making you miserable, I see no reason why a sane doctor would not let you try either of these two drugs, as they are both successfully used for addiction management, as well as chronic pain.

[jy13131]

Opiates are not an option for me either unfortunately. I am a case manager at a treament center and I am monitored very carefully. Also seems risky for me. I will have to work around that-
Thanks for the input though!

[Aiken]

You can't be terminated for taking a legally-prescribed medication for a valid illness, no matter what kind it is, and no matter where you work. That's against the law.

Don't discount opioids right off of the bat.

[Neco]

Especially opiates that are used as a treatment for addiction to other opiates..

Methadone may be on the fence.. a lot of people swear it does nothing to them, while others (me too) say there is something "there" that you feel.. But it is in no way like popping a truck load of Vicodin for instance.. It's more just like feeling normal, but a little positive.

Suboxone is supposed to be tightly controlled and administered in much smaller doses than methadone as well.. (like 1mg) and according to my case worker, a lot of opiate addicts prefer it to methadone and feel it works a lot better. It's supposed to be kind of sedating, but I wouldn't think to the point where you can't function, or that would defeat its purpose.

These medications are not like a script for Vicodin or Oxycodone, they ain't gonna severely mess you up, and Aiken is right, I'm pretty sure its against the law to fire someone for taking a legal medication for a valid medical reason.. You don't have to go to your boss and say you're an addict (assuming they don't know), and they have NO right to assume you are. Methadone and Suboxone are wonderfully useful medications that help a lot of people, recovering addicts AND chronic pain patients alike. RLS, cancer, a chronic painful injury... These are all valid reasons that have nothing to do with the social stigma surrounding methadone and other medications that are also used for addiction management.

I am pretty open about being in recovery these days, but I still always tell people I take methadone for my RLS, and not because I am an addict. I consider addiction management aspect a positive secondary benefit and nothing else. My addiction wasn't so bad that I needed Methadone but the severity of my RLS mandated that I continue to be treated with opiates and not give them up.. So it was a good solution.


If your RLS is painful, then you've already got a good excuse. Especially since you can't tolerate other medications and can't take benzos. To be honest, unless you try Mirapex, or Gabapentin you'll have to pray one of those works, or it will most likely be methadone/suboxone - or no treatment at all.

I've gone through periods without treatment and it is NOT healthy. You will crack so bad, if you don't get fired over something stupid like Methadone you will end up fired because you can't function and do your job like a normal person from lack of sleep and all the stress and other medical problems that can bring on.

I'm not trying to scare you, or put you down.. But you don't seem to have a lot of options open to you and you shouldn't so quickly dismiss ones that may help, especially over fear of getting fired when that may not even be legal.

Hope this doesn't come across the wrong way, maybe I am a little riled up, but it's only cause I care about helping others get the proper medications, something a lot of us have had to go to hell and back to do.

[ViewsAskew]

Hi
I am new to your board but unfortunately not new to RLS. I have had sporadic episodes since childhood. It has always been exaggerated when I took cold or sleeping medications. I only had to take medication for it beginning about 4 years ago. I took Klonopin almost nightly but I am in recovery for addiction now and this is not an option. I switched a year and a half ago to requip and it works but makes me feel icky when I take it. Occassionally it makes me REALLY ill and I vomit. It happened one time when I took one so that I could see a movie. Needless to say, I didn't get to see the movie. I am interested in getting off the requip. I am afraid that my body has become so used to the requip that I will get symptoms when I might not otherwise. I want to at least see what my body in a natural state does. HOW DO I GET OFF THIS STUFF??? I have not had a night without RLS in almost 4 years.
I appreciate the support and any information shared!

You can stop the Requip. You may not sleep. Your RLS may be horrible initially (or not), but you do NOT have to continue taking it nor do you have to taper off in any manner if I remember correctly. You'd want to verify that with a pharmacist (about not tapering).

If you have any increased RLS from taking the Requip, it should shake out to whatever "normal" is now for you. That process will take from 1 to 4 weeks. Maybe even a bit longer, depending on if and how much you augmented (see the Pharma "sticky" post for an explanation of augmentation).

Then you can find out. It really varies and depends as to what will happen. You might go through a REALLY rough period. That's why a LOT of us use opioids during that transition. They can help you get through it. At the least, you use them to allow you to function and get some sleep until the worst is over.

Of course, you may not have difficulties. You'll know quickly once you stop it how hard it's going to be. For me, by day five I was back on the dopamine agonist because I was so miserable and hadn't slept in 4 nights. But, I was a tough case. You may not be. Either way, it will get hard quickly if it does get hard and you'll be able to decide if you can do it on your own or need assistance.

[dogeyed]

JY,
Betty had said she takes Mirapex and it helps her sleep, so sit down with your RLS doc and perhaps get him to help you with going off the Requip and getting onto Mirapex. Also, Zach is absolutely right, there is nothing wrong with taking opiate-derivatives...so what you can do is, if the Mirapex doesn't work out for you, see if your physician will put you on Methadone or whatever, ask him to write a note for your work concerning the use of the drug. THEN talk to your supervisors about your condition, give them the physician note, and ask them if THEY think it's okay for you to take that medication or not. The worst that could happen is they'll say no, and then you're done and will have to go for more natural ways of dealing with RLS.

Since you've had it forever, you know the drill. But I DO know that you simply cannot take over-the-counter cold and sleep medicines with it, because nearly all of them automatically worsen the symptoms of RLS! I believe it's the antihistimine in it or something. At the very least, perhaps you could take a prescribed sleep medicine on the weekends, maybe, so you'll get some good sleep (the worst thing about RLS is sleep deprivation), and that's assuming those are not on the list of drugs you can't take.

Otherwise, everyone has tips for getting thru a rough patch with RLS, like wearing support hose or even medical socks like diabetics wear, also massaging the calves and stretching them out before you go to sleep, and then there's relaxation techniques like meditating, professional massage, and hot baths with lights turned down during quiet times of the day. Sunshine, heat lamps, heat pads, omega3s from eggs and B vitamins from wheat or oat cereals, perhaps extra iron, sort of covers the natural ways to cope.

But really and truly, if you've got this RLS real bad, to where you can't sleep right and all that, and plus if it hurts a lot, you have really got to get some good medicine, even if you have to look at transferring to a similar but less restrictive job as relates to drugs you can take.
GG

[Sojourner]

j.... not a lot to add to what others have said. just want to say hi and welcome you to the board. lots of good information here from long time sufferers. so hang in there and don't be afraid to push and advocate for yourself. best of luck. m.