restless legs syndrome

Mags39
Mags39 Online Community Member Posts: 1 Listener
edited January 2023 in Talk about your impairment
I hav recently been diagnosed with restless legs syndrome is there any help or advice, I'm in constant pain, thanks xx

Comments

  • moyrabing
    moyrabing Online Community Member Posts: 2 Listener
    Have you tried taking a magnesium supplement?  You can also buy magnesium flakes to out in your bath - it is recommended that you soak in this for 20 minutes.
    There are posts on other sites from people with RLS who say that magnesium really helps.
    Good luck if you try this.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @Mags39 welcome to the community :)
  • Matilda
    Matilda Online Community Member Posts: 2,592 Championing
    My mother had RLS and her GP prescribed a mild dose of Valium which really helped. Ask your GP.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    This is the info on the NHS site. There are also some medication suggestions on the site.  Have you been prescribed anything?

    Lifestyle changes
    A number of lifestyle changes may be enough to ease the symptoms of restless legs syndrome. These include:
    • avoiding stimulants in the evening – such as caffeine, tobacco and alcohol
    • taking regular daily exercise – but avoid exercising near bedtime
    • practising good sleep habits – for example, going to bed and getting up at the same time every day, not napping during the day, taking time to relax before going to bed, and avoiding caffeine close to bedtime
    • avoiding medicines that trigger the symptoms or make them worse – if you think medication is causing your symptoms, continue to take it and make an appointment to see your GP
    During an episode of restless legs syndrome, the following measures may help relieve your symptoms:
    • massaging your legs
    • taking a hot bath in the evening
    • applying a hot or cold compress to your leg muscles
    • doing activities that distract your mind, such as reading or watching television
    A small medical trial carried out in 2011 found a type of osteopathic exercise technique called positional release manipulation could be of benefit to people with restless legs syndrome. It involves holding different parts of the body in positions found to reduce feelings of pain and discomfort.
  • davidofqwerty
    davidofqwerty Online Community Member Posts: 1 Listener
    I was diagnosed with RLS when I was 20. And I've had the extreme version of it which was also in my arms and neck. I'm now 40 and do not suffer from it any more because of a tablet called subutex which is used for heroin withdrawal in addicts. I started taking them 3 years ago and am currently taking 16mg per day. Within 35 minutes of taking it for the first time the RLS completely disappeared. I stopped taking them after 18 months and within 48hrs of stopping them the RLS returned with vengence, so 2 days later i started taking them again and again within 35 mins it completely stopped again and I'm still taking them today. I honestly believe the subutex saved my life.
  • Boliv
    Boliv Online Community Member Posts: 1 Listener
    I had RLS but not as bad as DavidOfQwerty, it was fairly mild although unpleasant when I had it, and was accompanied by other symptoms, especially sudden excessive tiredness. It seemed to come on in the evening  after eating or drinking certain things, like crisps, alcohol, cheese etc. For me, after many years of trying different things, it turned out to be related to histamine instolerance, and when I dealt with that using DAO tablets (daosin, daofood etc with food), the RLS went away. Just posting this on the off chance it helps anyone else. 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Thank you for sharing this @davidofqwerty and @Boliv. I'm sure your insight will be incredibly helpful to others. Please do let us know if we can do anything to support you. :)
  • Katalina
    Katalina Online Community Member Posts: 1 Listener
    Hi Mags I have just been diagnosed. There are informative webinars from the RLS Foundation on YouTube. One is about iron. Get your serum ferritin levels checked. The first line of treatment recommended for severe RLS is intravenous iron. Gen up on these webinars. I discovered my ferritin level was 11 which is very low yet I had been told my ferritin was in the normal range. If you have RLS you need minimum 75. I am not a doctor but gained this knowledge from the RLS Foundation webinars.
    Kathy

  • ShirleyW
    ShirleyW Online Community Member Posts: 353 Empowering
    I suffer from RLS but not extreme.  
    I have found that magnesium supplements and making sure that I have a walk every day helps considerably.
  • lellyann
    lellyann Online Community Member Posts: 12 Connected
    I had RSL a few years ago and it just stopped. BUT now it's back with a vengeance, every evening about 9pm, the time I try to relax and watch TV, it starts and lasts all night! I am now spending the night walking around my flat, stretching my legs and arms and crying cos it won't stop. I do what the advice says to do but nothing stops it. I have a number of other medical conditions and I take a cocktail of drugs so I'm desperate to stop it. Every evening is like a living nightmare as it starts. I will keep reading the posts here which helps me know it's not only me that suffers. So thank you everyone. 
  • SueHeath
    SueHeath Online Community Member Posts: 12,388 Championing
    Ada Ada @Ada have you seen this chat darling xxx
  • ShirleyW
    ShirleyW Online Community Member Posts: 353 Empowering
    I used to get restless legs but nothing like as bad as you. I have found that Magnesium supplements help but some days are worse than others. 

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