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).
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.
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.
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.
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.
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.
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?
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.
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.
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?
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!
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.
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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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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1 ReactionI'm beginning intravenous iron treatment for 3 rounds to try to give it a quick bump.
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1 ReactionWell, 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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1 ReactionHi, @engelee - did your doctor explain why the iron and vitamin C and how they affected the restless leg syndrome?
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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1 ReactionHello. 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?
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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Like -
Helpful -
Hug
1 ReactionI 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.
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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Like -
Helpful -
Hug
2 ReactionsWow! 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.