refractory RLS, taking morphine - Restless Legs Syn...

Restless Legs Syndrome
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refractory RLS, taking morphine

byrnzy4
byrnzy4

I have been almost two weeks on time release morphine 30 mg, which I take about 7 PM, and it lasts 12 hours, to help me sleep. I tried 15 mg, which worked for about 6 nights, and then worked less and less until not working at all. (During the last three months, I got off 1 mg of pramipexole, and I think I am completely free of it now). My question: I am sleeping in three segments most nights, about 10:30 to 12:30, up for while with mild RLS, then 1-4:30 or so, up for a little while, then 5:30 to 7: 30 - times vary - but it is the three segment thing that is weird. I am tired during the day, and sometimes fight sleep while driving, while being VERY careful to not actually doze off. Has anyone else had this pattern on morphine? Is methadone better than morphine, and should I advocate for that? (my iron level is high, I take magnesium, I eat very low carb for two years now/permanently as a lifestyle, no drinking or other triggers). Thanks!

21 Replies
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You could try taking a small (250) dose of Paracetamol/Acetaminophen along with the evening dose. It will potentiate the morphine and just maybe extend its effect.

I have no experience of Meth, but Dr Buchfuhrer is a great advocate.

Good luck.

Methadone is the opioid preferred by most RLS experts. There are several reasons why they recommend it, when taken at the low doses (5 to 20 mg/day):

Much lower risk of addiction

Longer acting

Much less need to increase dosage (i.e., less buildup of tolerance). In one long term study with 76 RLS subjects, the median increase in dose over ten years was just 5 mg/day, with a maximum of 10 mg/day.

Fewer and milder side effects, especially much less dopey feeling.

All these are why it is often used in opioid addiction treatment. And for RLS sufferers, it has Ian additional benefit: it hits some novel receptors in the spinal column not touched by the morphine-derived opioids. This seems to confer additional relief from RLS symptoms.

I use it myself (10 mg) as part of my regimen, and have found it by far the best treatment.

Note: when you say "my iron level is high", what do you mean? Is that your ferritin level? For us, it needs to be at least 100, which is higher than what most doctors would consider adequate.

Is there an article I could show my doctor on methadone effectiveness?

This is the closest to a gold standard article, authored by a number of RLS experts on the appropriate use of opioids in the treatment of RLS.

mayoclinicproceedings.org/a...

It covers a number of opioids, methadone among them.

Good luck.

Byrnzy4, I'd be interested to hear your answer to my previous question about your ferritin level, if you care to share that.

my ferritin level was 153

If you’re in the UK you won’t get methadone prescribed - but maybe try extended release OxyContin- if you take twice a day it will even out the effects and ensure a steady supply of opioid without the ‘dip’.

I always wake at least once a night with mild RLS and I think most with severe RLS are the same.

You could add in the paracetamol as Madlegs advises.

Jools

Bossy50
Bossy50
in reply to Joolsg

Why can't we get in UK? I was going to ask my GP. I did wonder if only addiction specialist doctors here prescribe it but decided if it were for chronic pain or RLS then maybe a GP can.. Please God no, I recently tried methadone for a couple of days as an experiment (don't ask how) and it is fantastic for RLS and at a really low dose.

Joolsg
Joolsg
in reply to Bossy50

NICE have not approved it and most RLS neurologists refuse to discuss it! UK is at least 10 yrs behind USA. Hopefully if we all lobby our MPs and GPs that might........ change.

Bossy50
Bossy50
in reply to Joolsg

But a UK GP can prescribe for chronic severe pain I think? I just had a look at NICE blurb on it. My GP is pretty good (at off label) if we can put it down to me experiencing pain as the primary reasoning. I do experience (some) pain with my RLS too. He's especially prepared to consider when I've taken printed out evidence from US respected Specialists. I'll give jt a try. I'll be on opiates for RLS for rest of my life but the increase in tolerance on other opiates is a real problem for me. Meth doesnt haven't that problem and at considerably lower doses too. I'm one of the many who've tried everything else and opiates are only thing that works. I've heard about a med that helps prevent blood clotting, can't remember name of it, which looks promising for RLS too?

Joolsg
Joolsg
in reply to Bossy50

I really hope your GP prescribes it. Let us know how you get on. I’m on OxyContin and dread the time when it stops working. I just hope new drugs will have been discovered by then.

Low Dose Naltrexone has worked for a few on here but you can’t take it if on opioids.

Wishing you best of luck 🤞

Bossy50
Bossy50
in reply to Joolsg

Thanks, I will let you know how it goes am seeing my Doctor on 8 Feb.

Joolsg
Joolsg
in reply to Bossy50

Dipyridamole is the drug you’re thinking of I think- Involuntary Dancer has been trying that after reading reports on it working for RLS.

I was told I would have to go to a specialist for even the low dose of methadone, my doctor said it had a vicious addictive quality and he would not even try it.

Bossy50
Bossy50
in reply to byrnzy4

Yes but what country are you in please?

U.S. I am 5 hours away from the Mayo Clinic

Bossy50
Bossy50
in reply to byrnzy4

I'm in UK. If I'm going to be on an opiate for life, which I am now for RLS, then I'd rather it be methadone as you don't need increasing amounts as the years go by..and u only need a very low dose of it..

I'm on 30 mg of morphine 12 hour time released and I don't want to increase that, would rather go to a specialist for the low dose of methadone. But I am hoping that I won't need any increase

I , like you take 30 mg ms contin which is slow release morphine. I too go in 2 hr cycles of sleep . I also combine with .25 mg requip most times I wake up, trying to stay ahead of of the "alien" as I prefer to call my rls

Wow, thanks for telling me. I appreciate knowing others have this experience. When I was on vacation, I slept much better than the last two nights I've been home. I have a fairly low stress job, so I thought I'd sleep as well at home. I am having trouble staying awake during the day yesterday and today when sleep is interrupted so much. I can increase the gabapentin from 300 to 600. I just hate to get on that pattern

I take 30 mg ms contin 3 times daily and .25 mg requip before bed and each time I wake up. I too sleep two hrs at a time . I find the requip causes me to need bathroom visits every two hrs as well. The methadone treatment I am interested in seems to be most recommended by the experts. Maybe lose the Morphine and requip altogether?

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