Restless Legs Syndrome (RLS) Discussion Board

Any words of encouragement? - I have succesfully reduced my meds to 5mg methadone, but have not experienced a lessening of pain that I had expected. It has only been one week since stopping one other opiod, a low dose, but in the past I could at least gain some relief from 0700-0900hrs. This adventu...

Hi Beth, I was wondering if you have discovered that stopping the hydromorphone helped with your circadian problem or how your attempt at changing meds has gone. I take methadone and oxymorphone and expect I may benefit from a drug vacation also. Your comments are very succinct to me, especially in ...

Thanks Bjorn!

At worst my symptoms could include my scalp, as though some relief would come from rubbing my noggin, but this could be subjective and nothing to do with RLS. If it was RLS related I can see symptoms arising in the face.

Cool! I look forward to seeing it.

The FB page states 8 May as the deadline. Should we disregard this?

Thanks.

In a strange way your story gives me comfort. It has been ten years since I was grounded from flying for the Army, and when I realize how long it has been and how I continue to grieve it bothers me. It's grieving for the past and the present, and some days it can become overwhelming. You have a way ...

Thanks Beth, I'll keep my eye out for the results. And thank you Ann for sharing your story. I can stop kicking myself so much now, although I expect there are others who will continue to say I'm "lazy" or something similar. The fact that you were teaching at the Graduate level tells me yo...

Thanks again, its difficult to learn that I may not have the will power to beat this thing, but I know I'm not alone. I keep wondering if I might endure the pain and anguish long enough to allow the symptoms to subside enough that I could take only gabapenten or nothing at all. I survived a couple o...

Thank you to everyone for the responses. I plan to return the favor. My burning question now is How is this the first I've heard of this correlation? Dr. Earley has told me numerous times that I am just a night owl, but I knew there was something more. I have never in my life had this much difficult...

Hi Ann, Thank you for your candid response. It confirms what I thought, but didnt want to believe. I've been contrmplating another try at stopping meds or a an extended vacation to see if it may help to reset my sleep cycle, but I know I will be miserable to put it mildly. I'm tired of the opioids d...

I was wondering how in the world I might get out of this neverending sleep wake cycle that starts around 0200-0300. Its seldom that I can ever fall asleep at an earlier hour even when I get very little rest (3-6hrs daily). Any ideas? Its getting to the point that I wonder if I may ever find gainful ...

I often use my fist to pound on my lower legs, usually along the shin. Its good to know I'm not the only one!

There is a lot of drama involved with the FB groups. I was permanently blocked from a group for simply sharing information about doctors who specialize in RLS, a document that was posted in their own group documents folder! Total power trip.

Hello, I have been dealing with RLS for decades and was elated to find the care of Dr. Earley at Johns Hopkins, but at least once every 2-3mos I have difficulty receiving my renewals in a timely manner. I am beyond frustrated and have sent an email to the Patient Rep office at Hopkins weeks ago, but...