Rls licensed medicine in the uk

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I live in the uk and there isnt a lot of medicines that are licensed for the treatment of rls. There is three known ones to me prampoxile , ropinrole and rotigine. I have tried all of those and nothing has worked for me. I am currently at my wits end because I am scared that I am running ou of options. I have numerious blood test and everything is okay with my iron, I have been alerted however that I have a no heamglobin count but im not sure how to fix that. I would love for someone to give me any sugesstions in which i could ask my doctor to put me on. 

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  • Posted

    Dear Ayomi

    From what you have said your doctor has told you that you have a low haemoglobin count and no plan to do anything else.  I am an engineer so not qualified to say much except that there are lots of causes of low haemoglobin, one of which is that it might be just normal for your body.and nothing to worry about.

    However I suggest you either ask your doctor for a reference to a specialist or just go and see another doctor for a second opinion.   I would start with another doctor because your current doctor doesn't seem to be trying very hard.

    Ask your friends if they know a doctor who has done a good job diagnosing some illness.   I'm sure disgnosis is a bit of an art.   Remember you don't want a good bedside manner you want a good doctor who is willing to work at finding a cause if there is one.  If they say its all psychological find yet another doctor.

    In the UK is it difficult to change doctors?

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    • Posted

      Yeah it is quite hard I'm wondering if is even rls because it happens a all the time 24/7 not just at night. It's constant and maybe rls is a night time issue only and now it's in my lower back and not legs. So weird
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    • Posted

      Dear Ayomi

      First its very hard to tell anyone else what you are feeling.  People describe it as crawling, cramps, and all sorts of terms.   Hence it it very hard for anyone to diagnose you with absolute certainity. 

      Some people with fairly standard restless legs find it moves to the shoulders and the arms so I don't suppose it is unreasonablew to be in your lower back.

      Therefore I would suggest that you waste no time suffering and ask your doctor to assume it is RLS so you can see a neurologist and at the same time ask him to refer you to a specialist who would know about your low haemoglobin.   It is possible that the two conditions are not related.  Is it very expensive to see a specialist or can you gpo to a public hospital or something.

      I think you should do it as a matter of urgency   Its not right that you should have these problems any longer than necessary.    Besides it might be something that is easy to fix now but can get messy if you delay.

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  • Posted

    You need to be referred to a neurologist. This RLS--Willis-Ekbom?--syndrome is intolerable. Insist if necessary.

    I've had NO episodes for several weeks, since starting on the low-FODMAP diet (to treat IBS symptoms). Co-incidence?

    Good luck--do report back.

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    • Posted

      Dear Ayomi

      Its a pretty restrictive diet so you ask the wrong question.  You should ask what are the foods you are allowed to eat.  Its a shorter list.   There is also the problem that FODMAP testing is expensive for the laboratory that publishes the diet so they can't test everything.   Therefore they say that if its not on their list then dont eat it.

      Having said that I suggest that you dont start on the FODMAP diet until you see a specialist about the low haemoglobin.   The diet makes it harder to get all the nourishment you need and you really should be careful if you have a problem like low haemoglobin.

      Get back when you are seeing a specialist and I will be delighted to give you lots of details about FODMAP.

      For a bit of reading try googling Monash Australia fodmap and they should be top of the list.

      Good luck

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  • Posted

    Dear Ayomi

    The best thing I can do is send you the link to the Monash University site where they publish all the details free for anyone to use.

    Now if I insert a link here the post goes for moderation to make sure my link is appropriate.

    The quickest way for you to see the diet is to go to the discussion in this forum called "Restless Legs and Diet"   The second post (which is the first reply ) includes the  link you need.   Click on that and the Monash page should open up and you can see how well you can eat on the diet.

    For example you can eat fruits such as pineapple, banana, kiwi fruit,  oranges  mandarines and some others.  So you can eat quite a variety.

    There are a lot of veges you can eat and some common opnes you can't.

    Steak, bacon,  ham,  chicken (gluten free chicken) 

    Its not a starvation diet.   There are jams you can eat but be careful as most jams (in Australia anyway) use either apples or pears as fillers and you can't eat them, 

    If you want the diet to help see if you can get a dietician to help you.   Many councils can provide a dietician.    Most importantly Be really strict at first.   I found that one cup of coffee made with normal milk was enough to upset my legs, I have to use lactose free milk.   So be strict with yourself and please consider seeing a specialist for the low Haemoglobin as soon as possible.

    Cheers

    Graham

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  • Posted

    I live in the UK too and have suffered with restless legs for over 20 years. The only medication that has worked for me is clonazepam.  My gp started me on this 15 years ago and put me on a high dose of 4mg a night.  A couple of years ago I decided to try and wean myself off it and have managed to get down to 1mg a night.  If I go lower, the symptoms come back with a vengeance.  Very occasionally I will wake in the night with dreadful symptoms in my legs/buttocks and I take another 0.5mg clonazepam together with a painkiller and manage to get back to sleep ok.  I have worked in a gp surgery and we had several patients on 0.5mg clonazepam to treat rls.  Not sure why my GP put me on such a high dose of 4mg but at least I managed to wean myself right down to 1mg (over several months).  Some doctors are reluctant to prescribe clonazepam as it is a benzodiazepine and very addictive but I really don't know how I would have managed my symptoms without it.  Hope this has been some help.

     

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