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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@lisalucier

Hi, @rlsscotty – welcome to Mayo Clinic Connect. That sounds truly bad that your life is feeling horrible right now with the restless leg syndrome (RLS).

I'd like to introduce you to some Connect members who have also had to deal with RLS, like @kd1958 @bill54321 @mugglemary @gigiraj @veteranspouseinpain. I'd also like you to meet @johnbishop.

How long have you had this diagnosis? Have you been on other medications in addition to the methadone?

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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.

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@engelee

My doctor at Mayo R has me taking 25 mg slow release iron and 500mg vitamin C everyday and restless legs stopped

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

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@josita19

I’m glad that approach has helped you. RLS is no fun, although it’s not painful, it causes many sleepless nights. However, I cannot take iron or vitamin C because I have hereditary Hemochromatosis (HH). I have to rid my blood of excess iron by way of regular phlebotomy and I have to also control it through diet. I cannot take supplemental iron, nor eat high heme iron foods, or take Vit C becase it aids iron absorption. After my HH diagnosis, and now that my iron is lower, I rarely get RLS symptoms, so, I am confused.

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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.

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@engelee

My doctor at Mayo R has me taking 25 mg slow release iron and 500mg vitamin C everyday and restless legs stopped

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

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

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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?

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@juniemoon1

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?

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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?

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@juniemoon1

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?

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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.

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@colleenyoung

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?

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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!

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@engelee

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.

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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.

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