I have suffered RLS for the past 40+ years... And have been prescribed Mirapexin for 4 years, and now just gone on to Ropinirole, 2mg. As it is 03.52am the pills are obviously working... Not...! My right leg is going mad and is so sore. Help! What drug works?! I seem to have times when I am fine, for weeks, then... With no warning.. Bang they start up again. This time I've been suffering for about 5 weeks and I'm fed up. I want to sleep through the night please!
There MUST be a drug that works .... Can anyone suggest one...
Hi Lady, I have only been a member of this forum for 2 weeks, and I have found this most helpful. Just been able to share is a great help. What I have discovered is the main thing all RLS sufferers have in common is that we are all up all night with what I call the jibbly jabblies, but we at the same time are all different. What works for one may not work for another.What I have found out so far is, magnesium and calcium tablets, magnesium oil to rub into the skin after a bath, get your feritin levels checked, for RLS sufferers around 50 is good, they may put you on iron tablets, you can also get your magnesium levels checked at the same time. Someone mentioned Halcyon Bracelets helped, exercise, bouncing on an exercise ball, and lastly medication. Someone recommends disprin when the onset of RLS starts, I am on Pramepexole, and at the moment it works, but the doseage keeps been increased. Anyways hope this helps, Jimeka
Thank you for this Jimeka. I am going to take this to my doc and discuss it, but I will have investigated this first! I have already changed my pain medication through this site and amazed the docs by my knowledge! So let's try this now! I am away in Spain for a short break, so will get appointment on my return and let you know. Thanks again.
Although every drug can work in different ways for each sufferer I find that 50mg Tramadol works for me if i need to sleep at least one night to break the pattern! I then find sometimes that to take a break from my prescription Ropinirole (0.5mg once in the morning and again in the evening) for say 10 days with Tramadol it somehow resets the effectiveness of the Ropinirole which prevents me having to increase the prescription?
Does the doctor know that you are doing that M1946?
Oh right M... I have Tramadol as back up pain killers, and I think I have some with me here.. So I'll try your suggestion today by taking one of my Ropinirole now and one at night with a Tramadol. That'll give me 4 days before I'm home then I can re assess! Thanks!
Regarding ferritin serum levels I understand that up around 100 is the preferred level - especially if taking a dopamine agonist drug such as mirapex or requip/ropinerole. A higher level of ferritin serum is hoped to delay augmentation.
It might also be very useful to help with relief for someone with very minor and infrequent symptoms.
It has taken me about 7 years on Ropierole 2mg for augmentation to take effect which is a long time. The reference to Feratin levels is of interest as when mine were checked it was well into the 400's so is this why no augmentation until now. I have stopped ropinerole for a month and taking Premipexole 2 x '88 plus one 50 mg Tramadol will then go back to Ropierole and hope no augmentation!!! fingers crossed.
I know it is high Elisse and the Doctor was a bit concerned but decided to leave it alone due to my RLS I may ask to have it checked again but if they tried to get it down I wonder if my RLS would get worse (if that is possible as it is 24/7 now)
Probably having a high ferritin level is not why you have RLS. Usually having a low ferritin level can for some be an underlying condition for RLS, Secondary RLS. As has been said on here before, having a low ferritin level and taking iron pills doesnt always work to help with RLS. Whether you having a lower level would make things worse, i dont know. But it sounds as if you are having augmentation. I do know that people can take the dopamine agonists for years before augmentation starts,for others it can just be a few months .
If you have an inflammation in your body it highen the ferritin level. My ferritin rose from 48 to 231 due to an inflammation in a teeth root.
I can't say thank you enough to you all for all this help. There is a lot to try. So will take many months to get through it all. So trying the Tramadol version today as away from home let's see what happens! Thanks so much everyone!
Hi Ladybal, sorry to hear you are having bad time with RLS at the moment. I too have suffered for many years. I take ropinirole and find I get a better nights sleep if I take my tablets about 3 to 4 hours before I go to bed. This also helps me feel less groggy in the mornings. I was interested to hear about the posts regarding magnesium oil and shall be trying this out as well.
I take 2mg ropinirole.I jiggle doses. at the moment I take 2 tabs at 4 30 pm and 4 before bed. GP says I am still within safety limit. Hope that helps.
2mg. But it's not working at the mo. I've printed out all this conversation and given it to my doc and asked him to do homework and then I'm going to send him next Friday. I'm getting beyond tired now. Even if I take an afternoon nap, 30 mins alarm set... But within 15 ... Hey ho the leg starts, so I'm falling asleep at 8.30pm... Great company at night! I'm just so p....sed off at the moment. I want to sleep through! Good luck at doc!
What annoys me the most is that there is no rhyme nor reason for the on set. Exercise or not, pills or not, it just makes it's own mind up whither it's going to visit you or not! You can have a dreadful three months then it stops! You've not done anything different, it just stops! You think. Phew! You catch up with sleep, get back to normal, then bang... It's back. Why? It's so weird.
Anyway I'm back to uk tomorrow and I'm going to print this all out and hand it to the doc and get him to do some homework and then get me started on a new regime.
Hi LadyBal, you are right, RLS has a mind of its own, whatever you do or dont do, RLS will breakthrough. Lots of us have that happen, the pills are working and you are sleeping, then bam.!! The RLS comes back to bite you, for some it can be a few nights, then it settles back down. I dont think anyone knows why that happens. Especially after you have racked your brains, to see if you have eating or drunk anything different, or done too much exercise or not enough, taken a OTC med which might have set it off. Its enough to send you nuts. !! Lots of people do a diary of what they eat, drink etc etc, to see if they can track down what might be setting it off. That isnt always helpful tho, and a hard thing to do.
I find that the attacks seem to come on if you do something that restricts the circulation in the legs, like a heavy laptop on your knees or your legs tight against the chair rail.
Hi there,I've just been reading all this ,I forgot about this site it seems it was 2 yr since my last visit to it,I can't even remember how I came about it yesterday now ! Anyway thought I would give you an update ,I don't take ropinirole at all now and I haven't for a while,it appears that since I started amitriptyline and tramadol my legs don't bother me at all .
I suffer from RLS and find that codyramol (a combination of paracetamol and codeine) x 2 (a POM) taken at the start of an attack relaxes the muscles and stops the attack. Hope this is useful Jrushforthlee
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I do know that people can take the dopamine agonists for years before augmentation starts,for others it can just be a few months .
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