Restless Legs Syndrome (RLS) Discussion Board

I am a 70 year old physician (retired). I had severe restless legs and either failed or augmented on gabapentin, codeine, ropinirole, mirapex, rotigotine patch. My doctor wanted to start me on methadone years ago, but I resisted, not wanting to go on a major opioid, even on my best responses to thes...

hi--Tried to go to survey monkey but link in Night Walker did not work. So I went on the gen info email address to tell "my opioid story", asking them to refer it to Ms. Dzienkoowski. Didnt know if there were any other options. Has the survey been taken down? I got message that no such sur...

As a physician with RLS, with 62 years of existence (about 55 with RLS) behind me, I can attest to some progress in physician attitudes about this disease. Like fibromyalgia for many years it was written off as a psychosomatic illness. As a child I was told by my pediatrician that I had "growin...

RLS often tells me that I am getting too sleepy to drive--I tend to get this in my shoulders and neck--this is the only good thing RLS does for me. I might suggest a simple, non pharmaceutical thing that works for me--point the air conditioning vents directly at you and turn the temp down. this ofte...

Alcohol--especially red wine
Being too warm--hot weather, too many covers. First thing I do when it starts is throw off the covers
Anxiety--I think anxiety about having RLS can actually bring it on

I had severe augmentation on ropinirole and stopped it for a long while. Recently, with the consent of my sleep doctor, if my RLS breaks through my usual regimen (Neurontin, codeine and trazodone), I have been taking 0.25 of ropinirole on an as needed basis. Though scientifically this drug should wo...

Having gone through what you are, all I can say is that it does get better though it can take several weeks. I can overstate how intense my RLS symptoms became during the augmentation, and the fear that it would not get better was a tremendous anxiety. It WILL!

My sleep doctor recently stopped my iron supplementation because my hemoglobin was high, and I was unable to get my ferritin above 60 despite taking supplements for two years. (I started at ferritin of 13). I wasnt sure the iron was helping my RLS but it has gotten much worse since I stopped. I have...

I showed the study to my internist, who prescribed a course of antibiotics and probiotics (not the same regimen as in the paper tho--I think due to insurance coverage issues). No effect, I'm afraid on my RLS, or bowel function. Havent checked Ferritin as yet to see if it has gone above 100, though. ...

Sorry, but the first half of my message somehow got cut off--In it I explained that I am a physician with RLS since childhood, which worsened suddenly when I turned 60, associated with iron deficiency. My sleep specialist started me on Iron and Requip. He did not include augmentation in his informed...

(slowly, but faster than I should have) pushed the dose up, finally getting good relief at 1mg. After about two weeks things got worse and worse, and I (without calling him) raised the dose to 2mg. I had terrible augmentation lasting about 4-6weeks after I stopped the drug. After this, he was reluct...

Zach-- You really ought to ask your doctor to take a look at the reference I quoted--your story is very similar to some of the patients they discuss in that paper. Alan

My RLS is familial and I have had it since childhood--but it got worse rather suddenly, and I became iron deficient suddenly. Bacterial overgrowth can be asymptomatic. Also at least one of the patients who responded to antibiotics in the study had been "treated for RLS in the past". It may...

Found the reference:

Leonard Weinstock, et al. Restless Legs Syndrome in Patients with Irritable Bowel Syndrome: Response to small intestinal bacterial overgrowth therapy
DigDis Sci (2008) 53:1252-6

I have had RLS since childhood, migraines since teenage. My mother also had both problems. I wonder if the two are genetically liked. Interestingly my migraines are virtually gone since I started on a betablocker (metoprolol 7 yrs ago--but my RLS is worse.