Restless Leg Syndrome

Posted , 7 users are following.

Although I have had RLS mildly on and off over the years it has recently become almost unbearable, mainly when I come to sit down in the evening. It has strangely coinsided with my withdrawing from Amitriptyline and I wonder if anyone else has had this happen. Would be very interested to hear from you

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  • Posted

    My rls has gradually worsened over the years. I have never taken Amitrityline so I can't help there but my doctor has presribed Ropinirole which at least helps at night but nothing seems to help with the problem of resting during the day or as you say in the evening. Have you asked your gp to prescribe anything? Hopefully you have a sympathetic gp as I have as some seem to just dismiss the condition as a minor complaint.
    • Posted

      Thanks for your reply Susan. As yet I haven't been to my GP

      about it but if it continues I will certainly have to make an

      appointment. I have been reading that maybe a lack of

      magnesium or iron deficiency may be the cause so perhaps I need to investigate this more.

  • Posted

    You should certainly see your GP as he or she can help. I have tried magnesium oil which can help sometimes. I haven't tried tablets or extra iron but anything is worth a try. Unless someone suffers with this I don't think they can really understand what it is like.
    • Posted

      Your GP should be able to check Iron and magnesium levels. That would be an easy fix so hope it's that! You really need to read all the books and forums and become your own doctor. My GP allowed me to try drugs I suggested to him as I seem to know more about RLS than he does(!). He doesn't have any other RLS patients. He referred me to a specialist who suggested some drugs and also advised me to use RLS forums. We have to help each other as most GP's have little knowledge of RLS...
  • Posted

    My husband suffers badly from RLS and has tried various medications to no avail. Some will give him short-term relief and it's like his body gets used to the medication  after a while so we're back to square one again. I say 'we' because the partner suffers from this horrible condition too because of lack of sleep. What was the Amitriptyline prescribed for? Was that for RLS or for a different condition? I don't know much about these medications. Today my husband visitted the GP and was prescribed Sinemet for his RLS. Since this is used to help patients with Parkinsons disease I'm rather sceptical about its use for RLS because similar medications previously prescribed for my husband have given him very unpleasant side effects. I'd love to hear from anyone who has tried Sinemet and their comments on it. Thanks. Hope you get help too, Jean.   
    • Posted

      I have tried sinemet and suffered terrible side effects, mainly feeling sick upset stomach, diarrhoea, dizzineess, lost a stone in weight over 10 days as I couldn't eat anything. Doctor took me off them staight away, had to go cold turket for 4 days which was horrendous. I started back on patches and started taking Bio Magnesium tablets, have mentioned that I take these previously, and they really help, they contain 3 different types of magnesium, recommended for RLS.
    • Posted

      I was prescribed a very low dose of amitruptyline for sleeplessness which in fact did help but had some side effects that made me decide to come off it. Ironically I am again not sleeping properly due to RLS. Going round in circles I think.
    • Posted

      Hi. I read your previous advice about Bio-Magnesium and purchased some for my husband. Unfortunately they don't seem to have helped him. After having a terrible time from the horrific side effects of the Rotigotine patches, he went back on to Codeine Phosphate which was as good as anything else he's tried but after a while the body seems to get used to the medications and they lose their efficacy.Yesterday he went back to the GP for help and was prescribed Sinemet which, from my observation, seemed to give him worse symptoms  with more big twitching movements in the arms as well as the legs. He still had to get up in the early hours to go on the exercise bike which can give him some relief. From what I can deduce from reading entries in this forum, the same medications don't suit everybody. There isn't, unfortunately a 'one size fits all' tablet.  I feel that going on the exercise bike is the safest method after what we've been through with side effects of the medications prescribed.

      I sincerely wish all the best to all of you who suffer from this horrible syndrome  and hope and pray that someone will come up with some safe medication sooner rather than later.

  • Posted

    I am recovering from bone/muscle pain - osteo malacia and muscle twitching in my legs due to a low vit d level found in a routine blood test. Low vit d can cause poor sleep and as already mentioned magnesium deficiency can cause muscle problems and RLS. After a high dosage of vit d from my GP over ten weeks my levels in a blood test have improved and my general sleep, anxiety, bone and muscle pain is reduced by 80% now. I took magnesium orally and in an epsom salt bath 3x per week with the prescribed vit d. too much magneium gives loose stools but I regulated the magnesium and took a slow released version. Also, before realising that my vit d was so low I was given amitriptyline which I decided not to start as I hate the idea of the side effects and just felt that there was something else going on with my body.
    • Posted

      Don't blame you for not going down Amitriptyline route. I took it for about six months for anxiety and sleep problems. It did nothing for the anxiety so I decided to withdraw and I am now left with sleep problems again (but worse) plus withdrawal symptoms from the Amitriptyline i.e. RLS being being one. Found your comments about Vit D interesting so may ttry that. Thanks
  • Posted

    Hello Jean,

    good luck with it all- there is a website called vitamin d council which gives advice and support and the arthritis society talk about the problems from low vit d. Alot of GP don't want to do the blood test as  it costs more apparently than a normal blood count test! There is a NHS hospital in Birmingham which runs tests by a DIY kit - prick your finger and drop blood onto a test card and then send it to them for diagnosis, but it costs £25 for a testing kit. This does allow you to get it done if your GP refuses. 

    I wish you well

    • Posted

      Thanks Lini I will have a look at it. So many kind people have offered advice and I am willing to have a go at anything.
  • Posted

    hi there, this is for jean and anyone else who suffers from restless leggs etc., I have suffered from it on and off for the last eight years. however, the last three have been shocking , so bad i wouldnt of trusted myself driving the next day in fear of falling asleep at the wheel. I am only fourty five yrs old too. I would sit down in the evening and most nights  i would start to get fidgety and be so tired but i just couldnt sit still. Then i would head off to bed, trying to sleep being so tired, i would wake up on h our later and couldnt get anymore, i would have fidgety arms too in the end. However, just about when i was all out of ideas, my doctor found i had low iron so she gave me a liquick iron surup, called Ferodan. Well, it was for iron levels, but it blew me away when i slept really well the first night i took it. Then night after night i slept well still, then  a night i forgot to take it i found i was a bit restless again. This iron works wonders and its been approximately two months now, I feel so happy , Please, people,. try it, it is worth it

     

    • Posted

      Thanks so much Leanne. I am going to buy some as I am at wits end. It's such a vicious circle - feel tired but can't relax because of this awful restlessness and sure the tiredness makes it worse.

      thanks again

    • Posted

      hi jean, You are welcome. I sooooooo know what its like. I am hoping you can get the exact same iron surup i had because it honestly has worked and i cannot be happier. Liquid gets into your system better than tablets i have heard also.  Remember its Ferodan liquid surup.

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