RLS

My name is amanda I'm 27 years old and I suffer from RLS . I have had RLS since 2007 and I got it from being on chemo, I'm in 10 years in remission and there's nothing my doctors will do for me for RLS I've had narco perscribed once that seems to help with the pain but my doctors won't do nothing for me and i don't know what else to do. There are nights where I'm in tears and I can't take the pain what should I do ?

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  • Hi and welcome!

    What exactly are your symptoms , Shawty? And what medications are you currently on and have been on in the last 2 months- all of them- even cough meds etc.

    We can then have a go at helping you to get a better experience, hopefully.

    Cheers.

  • Can you try pot? I wish i could i didnt suffer with rls till i stopped now i rely on codiene, preagablin sometimes tramadol. I only suffer with pain below knees and feet boil all night and restless so i sympathise with you. Hope u find some help and support here x

  • I feel like I'm always running , burning , bug crawling feeling , I feel like I always hVe to be moving to try and stop the pain but it does not help and I get alot of pain I don't sleep . I'm not in no meds only two weeks ago I was giving narco for my wrist cause I sprained it but other then that I don't take nothing

  • Can you be more specific, narco doesn't really mean a lot, sorry. It might also help to let us know what part of the world you are in

    The more details you can give us the more help we can give you.

    That said there are some pretty standard things that can help:

    Hot baths/showers can ease things for a while.

    AVOID Caffeine and alcohol - they are bad for RLS

    many drugs can cause a worsening of symptoms as madlegs1 is suggesting so if there are OTC drugs you can stop safely then stop. Many 'sleep aids' contain antihistamines and that makes things so much worse!!

    Diet - many of us find avoiding sugar helps. Iron levels may be low that can make things worse also look into Gentle Iron. There are plenty willing ot offer good solid advice on iron.

    Stretches, if you can Yogic stretches can bring relief to some.

    You are among those that know only too well how bad it is so take some comfort in that too!

    Hope you get relief soon.

    take care,

  • I am from USA Rhode Island, Narco is a pain med it's like Vicodin that usually help me but I can't get prescriptions because my doctor will not give them to meme thinks I'm to young to be on pain meds . I had one script that he prescribed and that was it . I take about 20 baths to ease the pain a day but that only does so much.

  • That's just rubbish saying that , it's cruel to say your too young for pain relief . It infuriates me that they can be so uncaring . X

  • Yea that's what they tell me and it's awful that no doctor will help me

  • Why is everyone awake at 0:500 hours?

  • My body is quiet and my mind isn't.

    I'm beginning to think my brain and my body are f**king with me!

  • Hmmm, did you take the FB like a good rls sufferer?

  • That iron knocks me out. Did you fall asleep and then wake up?

  • FB? Been up all night sort of, drifting ...in ...and ...out ...

  • Bisglycinate. I think that insomnia, even without RLS symptoms, is still somehow related to that minimal amount of dopamine in the central nervous system. Might I recommend googling PatchMd Iron Plus and see if you can buy. I bought it off of a website called Bonanza because it was cheaper. But the manufacturer has a website as well. It is an 8 hour patch with 45mg of ferrous bisglycinate and vitamin c in a transdermal patch. It doesn't pack as much of a punch in the beginning but then you might be able to stay asleep. I found less awakenings using the patch.

  • thanks I'll look into that when my head is less mangled!

  • Cause our legs want a walk .

  • It's tomorrow with me in New Zealand! !!

  • My phone doesn't type words correctly sometimes sorry for the mispelled words

  • Yeah burn the phone! :) sure auto-correct gets us all at some stage, bit like the grim reaper!

  • Back on topic. There is great advice to be got at:

    rlshelp.org

    and you can contact the Dr there and get a personal response, (I believe he is a bit of a stickler for proper punctuation and what not).

    I'm not up on the US side of things and frankly I get weak even thinking about your healthcare system, ours is bad enough to circumnavigate! Mind you there's plenty on here will understand better.

    take care

  • Scream . Sorry but ive had many nights sitting myself hiding the tears cause thats how it gets you .docs can do brain surgery .heart transplant and hod knows what else .but nobody knows how to stop rls .i accept i just have to get up and do stuff till it goes cause having rls all my life theres nothing else to do .sorry.

  • Hi there. I know your pain. Have you tried Himalayan salt baths and magnesium as a supplement? Please google Ashley Black, Fascia blasting as well.

  • First of all congratulations on 10 years , I'm so sorry you suffer from this painful condition . I too suffer from it and if I can get some pain relief in as soon as I feel it starting and go for a long walk not always possible in middle of night , then I walk up and down my hallway . You are too young to not be getting any help , can you go to another doctor ? Bless you I hope you get some help . Xx

  • Thank you so much ! Going threw that was the toughest thing I had to do but I got threw it , I'm sorry you have to deal with your pain too it's not easy . I always feel like o have to walk and sometimes I can't cause it's to late at night

  • I can only imagine how awful that must have been for you , but your out the other side yeah . I walk round my house if it's in the night I walk around the house my hub is unconscious when he sleeps , I promise you I could put the hoover on and he wouldn't wake . I have been in pain nearly all my life with one condition and another but I keep mysel as happy as I can or I would go under . Hope you get some help soon cxx

  • Thank you it's tough but I try and hang in their I take it one day at a time it's all I can do but it's tough how we all have to suffer, I hope you get better soon

  • Well I have had it for fifty years so I don't think mine is going but I cope well . I busy myself when I can and rest when I can't simples x

  • Yea just one day at a time that you have been doing :) that's all you can do

  • It's true , I do think it's hard when you are young to cope with it my worst years were from 18-28 with fibro and the other things just came along in time and I think I just accepted I was going to have a life of pain and although it's tough I'm in a good place most of the time, and when spring comes so will my happiness . X

  • Yea a agree I think I have to learn to cope with it but there are days where I break down and cry cause I can't take it

  • I know my darling I have been there too and I know it's not easy and I have had times when the pain has been so bad I have wanted to die . But I have survived and you will too . It's sounds to mess if you might be depressed and no shame in that , most of us with pain can get depressed and that can make pain worse too . Go and see you doc see what he thinks . Keep your chin up xx

  • Thank you I will

  • HI Shawty, pain meds are very effective in treating rls but there are a few other possibilities and obviously it is preferable if you can avoid taking them. Have you tried Kratom? You can order it online in the states - you don't need a prescription for it. It works well for stopping symptoms for many people, although it does taste pretty foul. Also get your php to check your iron levels. You could try the ferrous bisglycinate that tredlight suggests. Raising iron levels can be helpful even if it doesn't stop your symptoms in their tracks the way it does for tredlight. Good luck

  • Okay thank you

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