I have posted about this before and I seem to remember that my post upset somebody so hope I don't cause a problem by saying this. But I know how much you are all struggling so I did want to share my own experience.
I have rheumatoid arthritis and a number of other health conditions and am not able to take, at the moment, the meds indicated for RLS. I have had RLS for many years, on and off, and usually mildly in comparison to many others, with the odd more severe bout. But recently I started to have big problems with it affecting my legs and arms, day and night and it was really getting me down.
My GP prescribed some Liquid Oromorph (10mg/5ml) for me to try and, from the first time I took It my RLS has been hardly noticeable and I have been sleeping through the night almost every night. I have found that usually 10mls in the early evening and another 10mls before bed works brilliantly for me and, apart from constipation, I have no side effects from the Oromorph at all. The GP tells me that, within reason, I can take it as needed and that it is not likely to cause problems when I want to stop (in terms of withdrawal etc). Obviously it is only helping the symptoms of the RLS, rather than the cause but, for me, it has been an absolute miracle which is why I wanted to share this information.
Also, my Mum has had severe RLS for many years and struggled with the RLS meds she was prescribed. And she found, that by taking magnesium and a vitamin B supplement, the RLS is hugely better and she rarely now takes the Rivotril. This may not be of help to anyone else - and I know how frustrated i get when people suggest that my rheumatoid arthritis could be "cured" by taking vitamins or eating/not eating particular foods - but just thought I would mention it anyway in case it was of interest..
Tillyx
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Tillytop
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Good blog Tilly, i remember when you first posted about using the Liquid Oramorph, i told you i had tried it a while back, It wasnt for me, as it made me extremely sleepy during the day, but then most RLS meds. do..
I am pleased it is still working for you, and it does have less side effects than the other RLS meds. well the dopamine agonist ones anyway.
I wish so much i could take the pain killer meds. if only they didnt send me to sleep in the day, i would be on them.
Thanks for your update, its good to hear of a success story from someone who has found a med which takes care of their RLS, all the meds usually are only stopping the symptoms, the cause is still out there somewhere
I know what you mean about dopamine agonist side effects. I have, in the past, taken a low dose dopamine agonist for a pituitary tumour and even at that low dose it made me feel very sick all the time and, over the years, I have taken RA meds where the side effects are as bad as the initial problem! I know from my own experience that living with a long-term condition with no "one size fits all" answer is very challenging so you have all my sympathy.
I don't know why anyone would be upset by you telling your story of what helps you. although I run into the same thing at times. I have tried all RLS meds listed on label, and off label (things that MIGHT help) and the only thing that keeps my legs quiet is a combination of meds. I also have a lot of issues, mostly my back and neck, so take slow release morphine, plus hydrocodone (which I understand from Elisse that is not available in the UK?) Both are pain meds that I was taking anyway after my surgeries. We tried all the "regular" RLs meds, and they never worked for me at all, and made me sick beyond description. Without the pain meds (at the same doses now for 8 yrs), I would have RLS 24/7. It still breaks thru, ebcause nothing works all of the time, but it is the best my neuro and GP and I can come up with, and I can lay still. ;o) I also take Klonopin (clonazepam) late afternoon, plus a sleep med at bedtime. I also use melatonin at the advice of my psychiatrist. We are trying to reset my inner clock, but I think we have both decided that my inner clock is backwards. :o) But, f one does use melatonin, it should be taken 2 hrs before you want to be asleep.
It is not liek taking a regular sleeping pill a half hr before bedtime. It needs about 2 hrs to "tell your brain" it is time to sleep. It DOES help me fall asleep faster. I never stay asleep, but it is actually nice to be able to lay down at a "normal" hr and fall asleep. Now to stay that way is the next thing, but I am kind of used to doing things at 3 a.m. now. after 42 yrs of RLS, as long as I can get 4-6 hrs of sleep, I feel ok. Well, ok for us RLSer's. some days I am just plain knackered. I love that word I picked up from my UK friends on your side of the pond. It pretty much says it all.
Thanks people for your replies. Although I have a number of long-term health conditions, I count myself very lucky that my RLS is nowhere near as bad as for some others.
Nick - I am so sorry your Mum is in so much pain with her arthritis. There are other pain meds available and it would be worth your Mum discussing the options with her GP. Although I have never tried them, I know others with arthritis who are prescribed pain patches which I believe release the drugs slowly and can help to minimise some of the side effects. The GP may also be able to refer your Mum to a pain clinic for more specialist help and advice - both about appropriate pain meds and other strategies for helping her to cope with chronic pain. Listening to other people's stories, sadly pain clinic referrals are sometimes not offered unless you ask - or unless you know to ask so it might be worth your Mum mentioning this to the GP. Also, just to make you aware of the forum run by Arthritis Care (arthritiscare.org.uk/forums). If you were to post your question about pain meds on there I am sure you would get some helpful replies. Really hope your Mum is able to get some help soon Nick.
Yes, there are a lot of communites on this web site, and the arthritis one is pretty busy. I have no idea about arthritis meds either, although I DO know that it makes a difference what kind of arthritis it is. and, I do know about Tramadol, and 400 mgs is the max dose for anyone, no matter what the age or issue. I used to take it, too, but for RLS mostly, since it did not help my pain issues much.
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