Restless Leg Syndrome (RLS) and Opioids

Posted by kd1958 @kd1958, Oct 21, 2019

Getting nearly impossible to get meth in Wa. St. By Rx but heroin given out like candy. Will heroin work? Desperate

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rlsscotty | @rlsscotty | Mar 3, 2020

In reply to @lisalucier "Hi, @rlsscotty - welcome to Mayo Clinic Connect. That sounds truly bad that your life is..." + (show)

No methadone yet . But yes other meds including , pardon the spellings gabapentin , pamaprexole, rotigotine and of course ferrous sulphate. I'm going to start 3 rounds of iron intravenous on Wednesday.

rlsscotty | @rlsscotty | Mar 3, 2020

In reply to @engelee "My doctor at Mayo R has me taking 25 mg slow release iron and 500mg vitamin..." + (show)

I'm beginning intravenous iron treatment for 3 rounds to try to give it a quick bump.

engelee | @engelee | Mar 3, 2020

In reply to @josita19 "I’m glad that approach has helped you. RLS is no fun, although it’s not painful, it..." + (show)

Well, I’m very sorry about the problems you have to tolerate. However, not all solutions work for everybody. I can understand why what Dr. scalcini ordered for me may not work for you. But, great that don’t have RLS.

Lisa Lucier, Moderator | @lisalucier | Mar 3, 2020

In reply to @engelee "My doctor at Mayo R has me taking 25 mg slow release iron and 500mg vitamin..." + (show)

Hi, @engelee - did your doctor explain why the iron and vitamin C and how they affected the restless leg syndrome?

engelee | @engelee | Mar 3, 2020

Dr. Scalcini in Internal me just knew what to do. Then I later read about it in the Mayo Clinic Health Bulletin.

juniemoon1 | @juniemoon1 | May 30, 2021

Hello. I've recently joined and this is my 1st post. I hope I'm doing it right! I had an appointment a few days ago with my new neurologist (the 4th one I've seen!). For the first time in years, I finally have hope that my RLS will be under control, I'll be able to sleep, and I can have my life back.

My husband and I met with this wonderful new doctor for an HOUR! For the first time in years, I felt like I was being heard. I had done a LOT of research before the appointment and had decided that I was going to ask for methadone. I wasn't even sure how this new doctor felt about the use of opiates for RLS. But, before we were halfway through the appointment, he suggested the methadone. I thought I was going to cry! Of course, I have no idea if this will be "the" answer for me, but I have Hope.

Anyone else have experience with opiates for RLS?

Colleen Young, Connect Director | @colleenyoung | May 30, 2021

In reply to @juniemoon1 "Hello. I've recently joined and this is my 1st post. I hope I'm doing it right!..." + (show)

Hi @juniemoon1, welcome. You posted perfectly. I moved your message to this existing discussion about restless leg syndrome where members are talking about RLS and opiates, including methadone. I moved your message here so you can connect with members like @engelee @engelee @rlsscotty @josita19 and others.

Junie, what a relief for you to feel heard and understood. When will you start treatment with methadone?

engelee | @engelee | May 31, 2021

In reply to @juniemoon1 "Hello. I've recently joined and this is my 1st post. I hope I'm doing it right!..." + (show)

I had RLS & my internet at Mayo prescribed 500mg Vitamin C & 25 mg slow release Iron. After many years of going to ER for terrible RLS and getting Ativan . I haven’t had an episode for 6 yrs—go figure.

juniemoon1 | @juniemoon1 | May 31, 2021

In reply to @colleenyoung "Hi @juniemoon1, welcome. You posted perfectly. I moved your message to this existing discussion about restless..." + (show)

Hi! I started the methadone 5 days ago. The first 3 nights were somewhat better. Where as before I couldn't get to sleep until 8:00-ish in the morning, I was able to get to sleep around 3 am. Then the night before last it was 5:30. Last night I went to bed at 10:30 and Slept Through The Night! I truly cannot remember the last time that happened. I woke up with a whole new outlook on life!

juniemoon1 | @juniemoon1 | May 31, 2021

In reply to @engelee "I had RLS & my internet at Mayo prescribed 500mg Vitamin C & 25 mg slow..." + (show)

Wow! I'm assuming that your ferritin was low at that time? How is it now? My ferritin wasn't in the single digits, but it had dropped by 50% in 6 months (80's to 40's). So, I'm also taking iron/vit C. At this point, the neuro said he wanted to concentrate on getting the symptoms under control, then we'll concentrate on the iron.