Permission to come aboard.

[ziggypiggy]

New to the community. Good to be among those who understand. Hoping for new treatments in the future that are more more effective and safe for all of us

[Hidden]

Welcome, you don't need permission. It's a big ship!

[LotteM]

Welcome! I read somewhere you have been on opioids for some 25 years. To treat the RLS ? We would like to hear of your experiences. Opioids for RLS is a much discussed issue.

[ziggypiggy in reply to LotteM]

Yes. The RLS. I had bad reactions to the first line medications. My Dr. At that time actually suffered from RLS himself. It was like heavenly therapy everytime I went. Anyways, we tried opiates next. Worked so well been taking it since.On a side note, my mom with severe RLS was on Mirapex for many years in the 90s. Gambled away many 100s of thousands while on it. So sad. Just goes to show each person can react so differently to medications. What's helpful and benign for one person can be a night mare for another.

[LotteM in reply to ziggypiggy]

Hi ziggy, thanks for the info. Would you mind to share what opioid you take and what dosis? And whether you experience side effects? I find it is a delicate balancing act.

[ziggypiggy in reply to LotteM]

15 mg Oxycontin. Same dose for 25 years. Effective about 80%. Sometimes the RLS symptoms overpower the medicine. Also, the medication really only last about nine hrs instead of the twelve they claim. So there is coverage issues. Sometimes I take it as early as 5pm if I know I'm going to be idle or like at a movie. The consequence of that is after midnight rls. So I try to hold off taking it as late as I can. Depends on the evening and the symptoms.I just try and power through the tough times. Works just well enough that it keeps me happy and my doctor happy.

Side effects would be some itching. Of course dependency. I never request a refill early so it's a high wire act some months and I can be without it for a day or two and can feel the withdrawal.

Some nights it can interfere with falling asleep. I think there is also some augmentation issues as my daytime symptoms have worsened, or it may just be that I'm older.

[Whymelord]

Hi Ziggypiggy,welcome aboard,I've been suffering from this horrendous rls for years and years,I found this forum which has been a lifesaver for me.no one has the answer or the cure,but we all know exactly what we are going through, I too have tried everything under the sun,some things work for a while then seem to stop,we are all hoping and praying that more studies are done on rls and waiting patiently on the cure,good luck.