New to site.

[brightonrider]

Hello to fellow RLS sufferers!
I have had the RLS symptoms all my life...only until the last few years I really never had a name to describe it. Never could sleep or lie in bed for any length of time without being miserable. Most of the time it would get me when I wanted to go to sleep at night. Many...many...many sleepless nights. I retired from teaching in my middle 50's...that's when it really took off. I had read that the symptoms get worse as one ages...now in my 60's no doubt that is true. The last 3 years the RLS has become so bad that it literally has consumed my life. After much study on the net I have tried virtually every remedy known to man to relieve the symptoms. Exercise...no exercise...eat...don't eat...nutritional supplements...yoga...relaxation techniques...ivory soap...you name it I've done it. I'm currently taking Requip and Lyrica with only minimal success. I get a little time over night that I can relax a little...and sometimes a little time in the morning. 3 hours sleep considered a blessing. When I'm moving...riding my motorcycle...working outside...talking to someone...there's no problem. But the minute I sit down...forget it. Within 5 minutes I'm suffering and have to get moving. Watching TV is almost impossible. Reading or getting on my computer is something I can very rarely do anymore. Now that it's getting warmer I'll spend many night outside swinging in my swing trying to get some relief. But that's not even possible now...I get the RLS while I'm swinging. So I walk the sub division streets half the night. The neighbors probably think I'm the neighborhood peeping Tom. Driving my car over 30 minutes at a time is unheard of. We take the dogs for a walk and a ride every night. It gets me on the ride home every night. I'll get an intense tired felling...to the point I almost have to pull off the road. Within 2 more minutes I'm saying to my wife...' if we don't get home soon I'm going to jump out that window'. This has really affected my wife terribly. She has to lie in bed each night and listen to me suffer. I'ts really had an affect on her health. In addition to the suffering with the RLS...I'm pretty sure I have augmentation from the increased dosages of Requip that I take. The symptoms now can come on me at anytime of day...but particularly at night and in the afternoon. The side affects of the Requip are also something else. I call it the 'drug from hell'. If it worked better I could put up with the sick of the stomach...and anxiety...and just crummy way it makes you feel. I've tried many different regimens to ease the side affects...but this particular drug really doesn't like me at all.
Enough venting! Get me talking about this ailment and I can't stop. Trouble is there's nobody to talk to about this so when I get a captive audience...here I go. Most people can't come close to know what a terrible thing this is. Not much sympathy from people who have never experienced it themselves.
Thank's for listening...I hope I can offer someone some advice...and also learn from some of you how to deal with this.
I'm going fishing...can't sit anymore...got to get moving!
RonC

[SquirmingSusan]

Hi Ron. Welcome to the discussion board, but sorry you have to be here. We all do understand just how horrible it is to live with RLS. It sounds like you need to talk to your doctor about getting on different medication. You certainly don't need to put up with Requip side effects and possible augmentation when there are other effective medications out there.

Have you tried Mirapex yet? It is similar to Requip, but it works better for some people than Mirapex, and the side effects may not be as bad. Sometimes people can switch directly from one to the other and get good results. Of course the side effects may be worse, and you might develop augmentation on Mirapex as well. But it might be worth a try.

If you do have augmentation on both Mirapex and Requip, then it's time to move on to a different class of drugs. Usually, when you stop a dopamine agonist and you are augmenting, you will need a narcotic painkiller to treat your RLS for a time while your dopamine receptors settle down. After that you can try other classes of medication, such as the anticonvulsants. But since you already take Lyrica, that class is probably not going to be that effective.

A lot of us end up taking opioid painkillers, such as oxycodone or methadone, to control our symptoms. These are very effective for treating RLS and usually have minimal side effects. The worst part is usually finding a doctor who will prescribe them to treat RLS.

Please look up the "Mayo clinic Algorithm for the treatment of RLS." You can find links to it in the sticky posts at the top of this part of the discussion board, and some people have links to it in their signatures. It outlines the treatment options for RLS and gives more information on what I've posted. It's a good thing to print out and bring to your doctor when they don't know what to do next.

I hope you have a good time fishing!

[Polar Bear]

Hi Ron, Welcome.
You will get the link to the Mayo Clinic Algorithm on my signature below.

And don't be concerned about venting, we have all done it, particularly during lon long nights when we are ready to our hair out.

[badnights]

Hi Ron. We do know what it's like, and I ache to think of you suffering like that! Dr. Buchfuhrer (who answers emails about EKD - he's on the website of the southern California RLS support group at www.rlshelp.org) has said that everybody with EKD (RLS) can get some relief, and 95% (or was it 98%?) (I'm paraphrasing here) can get full relief with the proper treatment.

The trick is to find the treater: a physician who can care for you. Susan has given you a great review of the plan of attack a knowledgeable physician would probably follow.

Please speak to your doctor about your need for treatment. Nobody should be suffering like that! especially when you realize you don't have to - that there is a medication regimen that will relieve your symptoms. You just have to work with your doctor to find out what it is. So do it! You need to stop the grief, for your sake and your wife's and really, everyone around you, but most of all for you. Your life is not a real life right now.

The Mayo document in Susan and PolarBear's links is a good thing to take with you to show and give to your doctor. Personally I like the medical bulletin published by the RLS Foundation better; it's at http://www.rls.org/Document.Doc?&id=2112. Read them, or one of them, carefully first, and highlight the parts you think are relevant to your situation. Then when you give it to your doctor, point out the highlights, and he/she may actually be able to absorb some of it during your appointment.

How much Requip are you on? I augmented on Requip and I call it the Evil Drug. I wonder how many of us do?

Do you know the criteria for determining if you're augmenting? You sound like you've read up a bit on this. If you're sure or suspect you're augmenting, it's important to get off the Requip soonest, but do not try to quit it without having something else in place because your symptoms will get even worse for a few days to 2 weeks after you quit while your brain tries to adjust.

[sleepdancer]

Your story of misery is echoed in these "halls". I'd just like to interject that I spent years suffering with augmentation before I realized what was going on, and that this was not "the progression" of the disorder. I regret not dealing with it sooner. But do not go off these meds abruptly. Even if you are augmenting, you still need to wean off. I found that if I dropped the dose down a little it could sometimes give me a few more months of relief before the augmentation returned.

More than my RLS, I am dealing with PLMD (Periodic Limb Movement Disorder), so what I need may not work for everyone else. But at this point I'm off all meds and using a TENS Unit before bedtime to get some sleep. My doc is going to do another sleep study soon to see if this approach is as effective in helping me sleep as I believe it is.

Best wishes in finding what you need for relief.