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RLS nightmare

Posted , 18 users are following.

Flangies
Flangies

Hello all, I have had RLS for a few years now and it drives me mad. My gp won't do anything even though feeling sorry for me! Just lately it has got worse and is now in the arms too! Any advice would be grateful 

5 likes, 28 replies

28 Replies

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  • RobertT
    RobertT Flangies

    Posted

    I'm very surprised your GP won't help. Has he not given you any reason? I read people are driven to suicide by the condition and without my Ropinirole I can't believe my life would be worth living, quite the opposite in fact.

    Your case is rather interesting though since your profile says you have haemochromostosis. I have a 94 year old anaemic mother who needs transfusions to treat it and I'm sure we'd be glad to here there's iron rich blood in the blood banks, but it's interesting in regard to RLS since RLS is associated with a particular lack of iron in processing dopamine. I wonder if there isn't some sort of reverse effect when there's too much iron in the blood. For a long time I have taken an iron supplement not least in respect of the amount of exercise I take and my suffering with RLS. Recently I read that older people can store up too much iron in the brain and that that excess iron can cause oxidation damage to the brain. I now seldom take an iron supplement. How does this all hang together, I wonder.

    • petejb
      petejb RobertT

      Posted

      I saw 11 doctors and none could offer a remedy my RLS.
  • Lilac_S
    Lilac_S Flangies

    Posted

    I think that is a terrible response. Fancy mentioning comitting suicide? Flangles ask for amiltrypiline as a starter or get a new GP. Ignore that irresponsible comment. 
    • RobertT
      RobertT Lilac_S

      Posted

      My mention of suicide was really only to emphasize how serious I thought the situation was, and possibly is. If Flangies is suicidal then I insist the irresponsibility is the GP's.

      A number of antidepressants make RLS worse (Mirtazapine possibly the most). What one really wants to know is why a dopamine agonist won't help or a painkiller if necessary.

      [...glad to hear ... (sorry)]

    • Flangies
      Flangies RobertT

      Posted

      Hello Robert

      I didn't take your response badly and appreciate your advice and Suzy's advice too. I do suffer with hemochromostis and don't really know enough about RLS so wasn't aware that it can be caused due to low iron! How strange is that knowing I have high iron overload. I have been advised to get referee to a specialist. I have private medical insurance through my partner work.

      So I will hopefully get some help. I can go 2weeks with no restless legs then bang it back with a big bang. It has got worse over the years too and is now in the arms

    • Flangies
      Flangies Lilac_S

      Posted

      Suzy thanks for your prompt response it is appreciated.

      I was given amitriptlyn a year ago as I had shoulder pain following extensive surgery I was also given gabepatene too. I no longer take these.

      Didn't know they could help with rls x

    • RobertT
      RobertT Flangies

      Posted

      When I first started getting it, a walk around the bedroom would do to "reset" things. Then I found that paracetamol and raising my blood sugar (eating carbohydrate) helped. Only when all this was failing did I ask my doctor about medication. Since there is an augmentation problem I guess they will tend not to prescribe until the problem is causing serious sleep loss or other problems.

      I believe you can buy an extract from black velvet beans online or even OTC quite legally in this country. It contains L-DOPA, a precursor to the neurotransmitter dopamine, but I understand this has even greater augmentation problems.

    • nikki74962
      nikki74962 Lilac_S

      Posted

      It might be an old pist, but I have severe RLS. It gets so bad. You think you might as well be dead. No sleep cann do this to you
  • coral81968
    coral81968 Flangies

    Posted

    I think you should change your doctor as I have not been able to find anything other than medication to help me so you need to find a gp who will prescribe you something to help ! 

    Regards coral

    • RobertT
      RobertT coral81968

      Posted

      The last time I looked at the situation you need your current doctor's permission to change to another or to get a secnd opinion, though permission to do the former may not often be found to be withheld. If you think you have a problem with your GP you might want to talk to the Patient Advice and Liaison Service (PALS). (All this if you are in the UK, of course.)
    • Flangies
      Flangies RobertT

      Posted

      Robert, I am not worried getting a second opinion to be honest! Lol. I did this re: the fact I was constantly tired and unwell. That's when they found hemochromostosis. I am glad I kept on as I didnt realise the seriousness of it long term.

      Thanks for your advice

  • JWH
    JWH Flangies

    Posted

    Greetings Flangies,

    I certainly understand what you're going through. I got RLS about 8 years ago and the medication I was prescribed stopped working, and in fact, was making my RLS worse (called "augmentation"). I was losing sleep and losing my mind. 

    Fortunately my sister found a RLS specialist at Johns Hopkins, where she works - Dr Christopher Earley. He may be the top RLS research doctor in the country, and he started me on low dosage Methadone (15mg) for my RLS. It's been an absolute miracle for me! It quieted my legs down right away, and the dosage hasn't needed to be increased any. Another sister has also had great success with Methadone. Get your doctor to prescribe 10-15mg Methadone, as it works for 85% of RLS patients.

    Good bless you and good luck! 

    J.W. Hornsby

  • JWH
    JWH Flangies

    Posted

    Also, Dr Earley is from the UK, Scotland I believe. He's starting to scale back his practice since he's getting older, but methadone has been a life saver! 
    • Flangies
      Flangies JWH

      Posted

      Hello and thanks for your message. I will SPK to my gp to get refered to a specialist.

      Must add this condition is surely debilitating.

      Even when I fall asleep through exhaustion I still wake up jerking my legs and arms. On a really bad night is a nightmare, other nights it is not so bad and a walk up and down the stairs or go and sit downstairs for an hour.

      I wonder if exercise daily may help. Like walking or light jogging

    • coral81968
      coral81968 Flangies

      Posted

      yes it helps for a short while I have even bought s tread mill but as soon as you stop and test it comes back they say that low iron levels can cause it too do k have been put on iron tablets as well but not noticed any difference o still need the medication to lead s mormal life 
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