bad start to 2017 pt/2

no no more broken wing mirrors [1st one not fixed yet] am going thru a period of complete waste of time going to bed to get some sleep my GP stopped me having PREGABLIN/CODIENE am on 3mg patches that in my view isnt enough to keep the RLS under control i do believe that most fellow sufferers on patches also have other meds to help am looking for some sorts of advice on what to hit my GP with when i see him on the 15th FEB [other than the gate post] in the past he ruled out tramodol/sleeping pills

whatever you put my way will be gratefully welcome. its 2oclock legs ok at the min but i know when i hit the sack they will start the minute i lay down hope to hear from you all asap many thanks in advance.

29 Replies

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  • nice.org.uk/advice/esnm67/c...

    Hi Stan,

    Know how you feel. I've upcycled 2 bedside tables!! My legs refuse to believe I've taken 900mg of gabapentin and 45mg of codeine phosphate. They just want to riverdance all night instead. I've given up trying to get any sleep.

    Try taking in the copy of the NICE guidelines on RLS ( link above) and point out the list of meds used for RLS and the detailed prices , as listed under "costs of alternative treatments". That might persuade him that pregabalin and codeine are recognised by NICE as off label treatments for RLS and they are cheaper than Targinact, which is the one drug recommended and licensed by NICE for RLS.

    Off to watch "the Crown" on Netflix while shuffling around at the same time. I expect I'll fall asleep around 4 or 5am . Hope you manage to get some sleep and persuade your GP to prescribe additional meds.

    good luck,

    Jools

  • Now I've just been reading about "Morton's toe", having googled "burning sharp pain in big toe" ( something I get often before the RLS kicks in big time). Morton's toe is where your big toe is a little bit smaller than the second toe. And yes I seem to have it.

    Fascinating what you can find out when the legs are keeping you awake in the wee hours. Seems like it may contribute towards RLS but can be helped by sticking a simple home made pad under your big toe. Well, I'm going to have a go at making one- got to be easier than upcycling the bedside tables and see if it makes any difference to the jumpy legs.

    Jools

  • hi jools ---i am sure your having a laugh but who the heck is MORTON isnt time you gave his leg back lol

  • Yup Stan, I know! You couldn't make it up, could you. The weird & wonderful things you discover in the middle of the night on the internet. Morton is more than welcome to his own leg & both of my jumpy ones.

    jools

  • My neurologist has put me on 5mgs of oxycodone (a controlled drug) late afternoon then I take pramipexole at 8 ( 360mgs max ). Yes it makes me a bit sleepy but I can cope with that ! Good luck

  • Angela can you just confirm your Pramipexole dose as that can't be right? X

  • Sorry its 0.36mg of pramipexole. 2 of the oval ones . Sometimes I take just 1 .Hope that helps ?

  • Go on rls website and down load documents with info on about your needs, my GP was doing that till I told her about what people on this group gave me, she has now given me codeine, as I can't take tramadol. The only thing is sometimes they can be a bit awkward if you take info in. They feel you are questioning them, but they can't know everything? But due to years of knowledge of fellow suffered on this site. My GP also referred me to a neurologist with knowledge of this condition 3 weeks ago, I am due to have appointment between 9th & before 22nd February good luck.

  • cheers SHAFT 1952 was surprised to read how soon you got your appointment my GP wrote off for one over a month ago telling me at the same time it would be 12mts or more

  • Where about in the uk do you live?. I have just stopped my last dose of ropinerole, but the last 4 nights I have been up varying amounts of time. Last night was the worst yet up from 11pm to 5am I had had 40mins sleep. I am on pregablin 25mgs lunchtime 50mgs teatime, then 75mgs at night, the pregablin is due to be slowly build up dose further. I also take codiene as I can't take tramadol. Good luck with contolling your RLS. Shaft1952

  • hi shaft1952 thanks--- i live in valley town called ABERDARE Its situated mid-way between CARDIFF/SWANSEA do you think it may have some bearing on the time difference--- ive gone thru all the med sizes ropinerole --pramipexpole all great whilst they lasted --now on 3mg patches with no back-up hence my posts . hope you have good nights sleep ----stan38angler

  • No no bearing on things. If you find out name of neurologist at hospital, check them on line and it can show speciality and other areas they are interested in, then if it says RLS. Look & see what knowledge they do have. Good luck shaft 1952

  • B**t**d Drs! Well I say that with the knowledge that my GP has prescribed me a decent if not ineffective amount so well done her!

    I trust the Dr weaned you off the codeine?

    I started on 1mg of the patch and a low dose of Targinact. Long story short now on 2mg Neupro and 40/20 Targinact twice a day. I also have Tramadol to use as and when but when the WBFUYLS, (whole body F**K Up Your Life Syndrome - more accurate than RLS!), kicks off proper it seems nothing will touch it. I have seen nights where I've my patch on, taken my Targinact, 100mg of Tramadol, and then have to take several grams of Kratom to ease the pain & movement. In fact twice this week - with that concoction in me I haven't gotten relief til after 7am, I then can ssleep/rest - I should be grateful I lost my job so I don't have to struggle on.

    I contact Dr B on rlshelp.org and he felt I should have been getting better relief on less :( Point is there is no telling, imho, what a person is going through and no way of saying X amount of drug Y will suffice.

    As Joolsg said maybe take along a copy of NICE guidelines and it could do no harm printing off the treatment options from rlshelp.org, (although might not like a US site so go with rls-uk.org). Again I mention the weaning off codeine as opiate withdrawal causes RLS in people who don't even have it.

    I'd push for a referral to a pain clinic they tend to be more realistic in their prescribing - most Dr's under use/prescribe opiates due to unfounded fears of addiction, (properly assessed people properly prescribed and monitored generally do not become addicted to opiates not my view but has been found in a number of studies). If you are still working you could tell them how its interfering with your work and you are worried if not brought under control you will end up loosing it.

    Hope you get it sorted soon. Take care.

    And Joolsg - give Mortons toe back to Morton :)

  • hi raffs thanks for getting back NO he didnt wean me off the CODIENE i had only been on it for 2/3 months maybe and had run-out i asked for more together with pregrablin got no reply he just tapped away on the computer the other part then spewed out the scripts that turned out to be for the 3mg patches and the meds for my chest infection. maybe thats why i am going thru hell???? its not interfering with work have been retired for nearly 17yrs it is of course not doing much for everthing else who the heck is MORTON?????.

  • Depending on how high the dose of Codeine was I'd say its quite likely that it is exacerbating the RLS. Wouldn't you love to be able to let Dr's feel the pain and discomfort they leave us in? They might think twice when prescribing.

    You may ask Joolsg about Morton, he has his toe apparently! :)

  • already have on both

  • Sorry you are having probs Stan after all your other lot. I havnt got an answer but look up what Raffs said,as you know I am on Tramodol with my patch going good but still have a bad day now and again,,take care x

  • I had to reply to this post but I will no doubt get it in the neck from Nightdancer and Pippins2 just to mention two. I had RLS for years but didn't know what it was or that other people suffered like I did. I was trying to run my own business and was going into work with about two hours sleep (I seemed always to drop off around 6 am). I changed my GP and was told there was a name for my condition and drugs to help but not cure. After an operation I was prescribed co-codomol and the codeine help me more than the other drugs so I asked for codeine on its own and I found 3 x 30mg worked quite well in the evening, however to cut a long story short (just realised the amount I have written) I was prescribed 2mg rotigotine on the Neupro patch which was encouraging to say the least but not quite there so I put two patches on and BINGO. I was transformed so I asked my GP if it was okay and after checking with a neuro consultant I have been on the patch for over four years but, there's always a but, and this is where I will be castigated, in the early evenings when RLS tries to break through I take 3 x 30mg codeine along with 3 x 50mg tramadol. I have told my GP who still prescribes them and I have told other doctors in hospital (have just had a total knee replacement) who give a sharp intake of breath but then say if it works stick with it. I am not suggesting anybody does what I have done after reading this but I am now virtually a normal human being who is brought down to earth only when I forget to take my meds. THIS WORKS FOR ME, IT MAY NOT WORK FOR YOU! As raffs said " there is no way of saying X amount of drugs will suffice.

  • As a retired medical proffesional , having had RLS all my life, but only deteriorating in last 6yrs. I am not supprised GP raised eyebrows, you need to look on line at long term effects of both of these drugs. I don't know how you wake alert the next day after all that amount, but as you say what works for you, shaft1952

  • I seem to have qa big tolerance for opioids whereby small doses are ineffective and larger doses are...just about. Other drugs seem to knock me for six at small doses.

    Its a shame that those of us educated enough aren't allowed to have a better say in the drugs we use. I for one can see no reason why the opioids are not used more - forgetting the misguided Dr's that think everyone who takes these ends up addicted the research shows otherwise. I know for one I'd rather take plenty and have an easier life than always take an insufficient dose to placate the fears of a Dr that hasn't done the research.

    If they just looked at the use of Heroin by US troops in Vietnam they'd learn a thing or three about addiction, tolerance and drug use! I would bet my last pound that the side-effects of opioids are not as deleterious as the side-effects from uncontrolled RLS.

  • Jefro you are obviously aware that 60 mg of Codeine is the maximum dose to take in one go and 2x 50 mg of Tramadol is the maximum dose to take inone go. You will have seen it often enough on here that 3mg is the maximum recommended daily dose of Neupro patch. You must also knowthat is not normal practice totake Codeine and Tramadol at the same time.

    You won't be "getting it in the neck "from me. Your body, your choice

    Good luck xx

  • same answer as Pippins. Whatever works for you, but just know it is a lot of drugs at a high dose. But, if you are transformed, then so be it. It is not normal practice to be on that high of a dose. Just know you have nowhere to go up in dosing, IF it stops working for you. But, good luck and may it last. We only go by what the recommended therapeutic dose is that is put out by the IRLSSG, the RLS-UK Foundation, and the US RLS Foundation, Johns Hopkins, Mayo Clinic, the Quality Care RLS Centers. But, if you are happy right now, then we are happy for you. Only if you start augmenting would I say something. Cheers!

  • hi pippins good to see back!! is your MUM ok now or are you still with her??? ive read what JEFRO posted and your reply as ive got some 2mg patches left i have been contemplating putting 2 on just for 1or2 nights just to see if it would give me some relief then go back to the 3mg --am open to your reply!!!!!!---- STAN.

  • Hi stan, my advice would be not to be tempted to use 4mgs patch. Yes, it would most probably work, BUT then dropping back to 3mgs which doesnt work i am wondering what would be the point. The highest dose that is set by whoever works out the doses, is 3mgs patch for RLS. They set the dosage for a reason. Is there another doctor at your surgery you can see who would be more willing to give you either the codeine or the tramadol. ?

  • Please do not do that, Stan. Just because ONE person says it is ok, it is really not ok to just decide to use 2 patches, and double your dose to one that is higher than recommended. Jefro is an exception to the rule, no one should be doing that to be honest and to double your dose like that for 2 nights and then have to go back down, is not a great idea. We know you a lot better than we know some people here, so I only say it out of concern for you, my dear. :)

  • hi nightdancer ----many thanks for your reply you have endorsed my decision not to double up on the 2mg patches as you say jefro may be heading for a bad one ---- once again many thanks STAN.

  • thanks for post JEFRO -- my GP has ruled out tramadol plus he didnt give me anymore CODIENE---- so there you go-- back to the surgery on the 15th to do battle.

  • I have been taking codeine and tramadol every day for nearly four years now but only once a day at about 6pm and I have no after effects or side effects apart from a good nights sleep.

    I have tried taking the recommended dose of both drugs and in one day I would have taken 8 tablets and over a week 56 tablets and I would still be suffering with RLS. I have found that RLS needs a big hit to stop it so 3 tablets per day or 90 per month is not excessive and not habit forming. As long as my GP is happy for me to take them then I am happy to be free of jiggy legs.

  • Thats all good then x

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