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← Return to Severe RLS solved for me
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@reillyg1013
Share my story if it will help. I hate doing meds but it is the only choice I have if I want to live. I don't say this lightly. I was so close to taking my own life because what I was going through was not living, not even existing, it was 24 hr/day agony. As I stated in my initial post I tried every medication and life style change there is on the books. Since my last posting I have stopped the dopamine agonists per my doctor's recommendation. Evidently the latest clinical data has shown dopamine agonist to have significant long term adverse affects but the Neupro was augmenting anyway and become much less effective. I am now on only one medication, 15-20 mg of Methadone per day. I hate it. I cannot stop taking it without severe withdrawal symptoms and horrible RLS recurrence. So I live with a dependency on Methadone and the resultant perpetual constipation side effect. The Methadone does keep my RLS in check and I can lead a mostly normal life. Without Methadone I'd be dead and this is not hyperbole.
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@zombiewoof
So many people do not understand it when you tell them you have RLS. They make comments like oh yeah, I get the jimmies too or yeah I get cramps in my legs. RLS is nothing like that, it literally ruins your life because you never sleep and the anxiety is overwhelming. I don’t go on vacations if I have to travel more than 3 hours by car, and even at that, I let the driver know I have to stop and walk around at least once during the trip. I refuse to get on a plane because of my fear of having to sit for too long.
Several of the people at the support group were also on methadone and said the treatment along with other medications was working.
I applaud your bravery and I’m so happy that it is working for you.