New to RLS meds

I'm new to this forum so any advice would be great.

I have had restless leg since I was a teenager . I am now 41 and it's the worst it has ever been. Every night watching TV I feel it starting and have to keep moving my legs. Some nights it's worse than ever but I don't get a single night without it. By the time I get to bed I can't sleep and have my bare legs propped on a cold wall to try relieve them.

A few months ago I hurt my back and was on Solpadol and Diazepam for the pain which also to my delight relieved my restless leg at bedtime. When I no longer needed the pain meds for my back my restless returned.

I have tried supplements, had my bloods checked which were normal, bracelets and creams but no relief. My last resort was the doctor and I am now on a third medication Ropinirol. It has been upped from 0.25mg to 1.0mg. I am so tired on the 1.0mg and getting pain in my right leg. Is this just a coincidence or a side effect ? Will this tiredness go ? Why can't I use a small dose of codeine every night instead ? Thanks for reading this.

13 Replies

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  • Welcome- it's the continued use of the Ropinerol that is doing you in. It's called augmentation- check it out on 'search'.

    You will need to check out non dopamine agonists - for something like gabapentin/ Horizant/ pregabalin.

    It may be that as benzos worked for you already- then you could go back on them - but be aware of the longterm pitfalls- tolerance / addiction / need for frequent holidays ( and I'm not talking the Canaries) etc.

    Two sites are worth researching-

    Rls.uk.

    Rlshelp.org.

    You will find a leaflet on augmentation in them.

    All is not lost- you will get relief. Your greatest challenge may be in educating your health professional.

    God luck.

  • Thanks so much.

    I will go have a look at these sites.

    Anything to get relief.

  • Martinekay, this is worth reading on augmentation:

    sleepreviewmag.com/2015/02/...

  • Hi Martinekay, It doesnt sound like the Ropinerole is for you, and the fact you have had to up the dose to 1mg means it sounds like you are starting to go down the augmentation route, thats when the Ropinerole is not working like it used to so you need to keep upping the dose. Also for some people the tiredness does not go away. Just dont let your doctor up that dose any more. Not sure what the pain is you are having.

    Codeine can work wonders for RLS. So, it can be used for RLS. Creams, bracelets etc are not really effective for RLS. Altho some things can help along side of a medication.

    You will have to ask your doctor about taking codeine, some doctors are reluctant to give out pain meds. You had your bloods done, did you have your ferritin level tested..? Low ferritin can for SOME be a reason for RLS a underlying condition for RLS. For RLSers, it needs to be 50-100, if below that number then trying iron pills MIGHT help with support from your doctor.

  • This is a run down on treatments - none of which my doctor even knew about. He wouldn't even listen to me, but wanted me on Ropinerole, because his wife used it. All my blood work was normal - but that iron (Ferritin) - was 49 - still normal but I read the John Hopkins treatments for iron even in people with normal levels. It has worked for me. 18 mg Ferrous Bisglycinate Chelate - daily for 2 months - now every other day. hopkinsmedicine.org/neurolo...

  • Hi wondered have you tried pramipexole , i have been on them for a few years and they work for me , i now also take solpadol 2 at night before bed and i get a great sleep .I sometimes only take 1 solpadol all depends how bad i feel . Hope this helps

  • Have you tried iron bisglycinate, calcium citrate, and Chiropractic care? (Esp. since you have recently hurt your back.) I have found (and I have also had RLS since a child) that if my back is out of alignment, my RLS is SO much worse, as it presses on the nerves and makes them hypersensitive. When the chiropractor fixes it, my RLS is SO much better. Then, for me, the iron and calcium (and a few other things) seem to keep the internal component of RLS at bay.

    Also, to keep the spine flexible, I do stretching exercises. There are other people on this site who also do these things. Even if one needed to take some drugs, there are things one can do to help calm the RLS and minimize how much medication ultimately is needed. A three pronged approach, as it were.

  • Hi all,

    Thanks for all the replies.

    I have tried Pramopexole but no effect with that and my iron levels are good.

    I do notice when my back is tender my RLS is worse so will give the excercises a go.

    The only thing I find that does work is co-codmol/Solpadol but my GP keeps telling me I can't keep taking this but when it comes to 1.30 am and still no sleep I am sooooooo frustrated and in tears I have to take 1 Solpadol. When it's bad then two is what's needed to control it. Why do the doctors not like giving this ?

    This is such a debilitating condition and no one seems to understand unless they have it. Thanks so much for the help. It's really appreciated and so good to know there are people out there that understand.

  • Hi all

    I also forgot to mention that since I was a teenager when in bed at night depending how I am lying I get a numb patch on my right leg on the outer thigh.

    This has continued into adulthood and now instead of it being the size of my fist it is the whole of my upper thigh from my knee to hip still on the outer side. My GP isn't concerned about it but could this be a nerve thing and would gabapentin type meds work better ? And could it all be connected to RLS. Sorry for all the questions but I feel like I am going off my head .

  • Dear Martinekay

    I feel compelled to mention the Monash University FODMAP diet. Following this diet has left several people including me almost free of RLS symptoms. Google it and look at posts on this forum and on the UK site Patient.com It might not work for everyone but its free. Its NOT a healthy diet and the idea is to use it as a tool to identify what is hoped to be a limited range of foods that adversely affect you. Some unlucky people find that they are intolerant to many foods while others might find that eliminating (for example) lactose is sufficient to give them a good nights sleep. Give it a try but be absolutely strict. Don't kid yourself that one onion, garlic clove or apple won't hurt. It will spoil the test and you will continue to have the RLS. Its worth a try - google it and talk to your GP and talk to a dietician who can demonstrate they are familiar with FODMAP.

  • Thanks so much ,I will go give this a try. Anything to try and relieve this as it is ruining my life at the moment.

  • Good luck if you need any more information just post it here

  • why didn't you ask the doc for Solpadol and Diazepan if it had worked before.jonjo

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