Where I am at the moment

I've been having a really hard time with the rls...my feet,legs,pelvis and lower back. I'm taking co codamol at night to get a little bit of sleep but it wakes me up when the pills wear off. I still won't take the dopamine drugs. I know my ssri has probably made things worse but I've been on them for a year almost and have no intention of giving them up. They have literally saved my life . And I feel any side effects should have stopped by now anyway. My diet has gone completely to crap. I'm living off chocolate,biscuits,nuts and energy drinks to get me through work. All bad I know. But I can't seem to get control. It must be about two years since I had an rls free 24 hours. I am going to see a nutritionist tomorrow. She also does the koren chiropractic techniques. I have seen her before a few years ago and it did help but couldn't afford to keep going. Don't tell me to look at the site with drug and foods to avoid....I don't believe what I eat and drink has any effect on my rls. Although it is impacting on my general health. That feels better ....getting it all out!!!! I've been saving up a bit and mean to blast it with whatever help I can find out there. Nothing ventured and all that! And I need help especially with the eating. I got myself lost!

24 Replies

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  • Well i knew you where having a bad time, but didnt know it was this bad, sorry to hear this Dragon, but im a bit like you, i dont believe anything i eat or drink make my RLS any better or worse, ive try all that cutting things out and it makes no different to me.

    Wish i could say something to help, i know you dont want to take the dopamines, what about Gabapentin, did you consider them ??

  • There was a reason why I couldn't have that but I can't for the life of me remember why!!! Ha ha ...I'll do some reasearch.....thanks Tallula. You are always there for me..x x x x

  • you do the same for me xxx

  • Awe it sounds reeli bad times for u .....i do feel for you ....i dont have ot to that extent but wen i do have flare ups its my legs n right arm always ....iv been told to eat bananas dunno if its helping but i have joined a gym purely for the swimming but my lufestle is 100 miles n hour ....id love to be able to sit n relax sumtimes but its a no no ....i just keep on going .......hope ypu find the help you need .....i only joined this group last nyte but im loving communicating with ppl who know how i feel ...coz it cannot be described to anyone whos never experiencedrls

  • Hi Dragon, I'm not a big sufferer and don't profess to have rls in the same awful way that many on this site do. My latest bout was brought on by a cervical spine operation (wonderfully successful). I was totally unprepared for rls to strike, and after just 10 days felt a wreck. However, I wanted to find a quick remedy (I knew so little about rls). I did find cocodamol a little helpful but as soon as I strated taking Magnesium Phosphate the rls stopped. I was one of the lucky one's and as I said it's been intermittent only for many years but for me this worked. Worth a try if you haven't tried it already - I recommended it to another rls sufferer and it worked for them too, and it's not a horrid, addictive drug. So sorry you're having such a bad time and hope things improve for you very soon.

    best wishes.

  • What about Tramadol, thedragon, have you tried that pain med, its stronger than the co-codamol.. All the bad stuff you are eating, i am sure is because of the sleep deprivation, Gives a quick energy fix to get you through the day. Thats understandable. As we know, RLS can get progressively worse as time goes by.

    Hope the person you are going to see will help you.

  • The eating crap is a comfort thing isn't it! And you've eaten it absent mindedly! Sometimes self control goes on holiday....it sounds simple to say get control but its not .

  • It's like being 2 people....the normal one and the rls freak!

  • Yes, it is..!! You are miserable because of lack of sleep, so turn to crap food to comfort yourself, anything to feel better .. Its not simple to say get control, and i hope the lady you are seeing will help with that.

    Shame the Tramadol did help.. Not sure what you can try next.

  • Elisse, I too, have to have that morning coffee or I can't make

    myself move, I'm like I'm walking in a trance without it.

    Bad junk food is comfort food and that's what most people seek

    when they can't sleep, eh? =O

  • Thanks everyone for your support. I have tried magnesium but it didn't really help. Tried for a few months. And as for tramadol...it think smarties would have more effect.....nothing at all...not a sausage! I'm wondering if I have a physiological problem . I seem to have certain points where I feel the rls comes from....maybe an injury when I was a child that I don't remember. I don't know! Maybe my mum did drop me on my head! I slept from 8 am till 10...my appointment is in an hour. The lady was really upfront on the phone saying she knows about rls and she cant cure it but can help my eating and hopefully other stuff. Ill let you know what she says

  • Hope you find it helps Dragon, we want you back to breathing fire soon as possible :)

  • I have what they call severe RLS. I agree the dopamine agonists have horrible side affects but work great. I take breaks from the "RLS" drugs by substituting them for fentanyl patch. I start with the 12 and eventually end with 37 and then start working my way down again. It is a narcotic 100times stronger than morphine so you have to be careful with it. However it really does help RLS.

  • It makes me very sad to read about dragon, tallula, elisse and everyone else here who has resorted to painkillers for rls relief. I am the same. Surely clinicians should be re-thinking their approach to rls and researching better options for treatment. For me tramadol was the most fantastic painkiller, but ugh, the nausea, and on one occasion my husband had to fetch me home from work, as they spaced me out bigstyle! The 'script strength cocodamol are of some help, but of course, only mask the situation. Wow, rubylane, fentanyl - I have had that following surgery, but it is another 'out of it' drug for me - are you in US? I have not pushed for the dopamine drugs, because the thought of them only being a temporary solution would be devastating when they ceased to work. Does anyone know roughly how long they work before the augmentation begins? Cheers all x

  • Hi, genorm, i dont take any of the pain killers for my RLS, i couldnt even if i wanted to, they are too strong for me, even co-codamol.. Tramadol, made me violently sick. I take pramipexole, Augmentation can start for some people either after a few months or years. It just seems to depend on the person. All medications only "mask" the RLS, its always in the background waiting to get us.

  • Well that was interesting! It was good to find someone who understands and really wants to help. She had a good laugh at the food diary I did over the last week! She is starting me on herbs and stuff to try and sort out my diet and she will e mail me what to eat each day....takes the pressure off me. She worked on some trigger points that I seem to have and gave me some excercises to do. She says she has never seen such a bad long term case but will do all she can to help. Also some help to cope without the anti d. Fingers crossed. I feel a bit more positive.

  • Just another bit of info to see if it can help u.I consulted a neuralologist on Monday and he suggested taking me off Pramipexole( due to severe augmentation) and tr ying Clonazapam).It takes a bi t of time to wind down from the Pramipexole but it might be worth a try. Poor you I. Do sympathies as I. Am going through agonies myself. Hope the diet treatment works for you . Good luck

  • Please Conchita, tell me how that is working for you.

    It was suggested the same by my Neuralolgist..

    I was told that it's a controlled substance *USA..

    so I am making hard decisions about it...

    I am on Pramipexole..it's been a year. It's super hard

    nights when I go without a dose.

  • I'm going to be starting the Herb part of my diet today.

    Yum Yum (kidding)

    I started a little garden of herbs. They smell

    awesome in the house. <3

  • Thanks everyone x

  • I'm sorry that this is so hard for you to get through right now, thedragon!

    I've been doing the veggies and fruits in a blender drinks with added

    protein for almost 2 weeks now. It's making a world of difference in

    my energy level and how I am handling my work day.

    Everything still hurts on me (I have Rheumatoid Arthritis) but it's

    not crippling me at all..

    As far as RLS goes, I am not seeing much change at all. = /

    I sincerely wish that I could tell all of you differently. = /

    I finally feel like I am taking care of number 1 (me) and it's been

    so long that I have only cared for others while I wear a pony tail

    in my hair (my version of an up-do) or make up... I eat last, I

    am the last in the kitchen to clean it up..

    I splurged on make up, sexy perfume and got a little haircut

    that gives me a good feeling, I bought a couple summer

    outfits (I hate, hate, hate shopping)

    I force myself out of the bed an hour before work to make

    sure that I look good walking out that door (big change for me)

    and even on my day off I do the same..

    I just feel better about life, can deal with less sleep better...

    I don't know if it's temporary or not. I'm not rich enough to do

    this splurging very often but It's helping me for now.

    P.S. I still have to have that morning cup of coffee and a diet

    mountain dew or I can't get my cart moving in the morning...

    so you are not the only one, my dear =)). I will not ever give

    up my Paxil (panic attacks) I would rather not be alive than to

    be without it. (panic attacks would control my life)

  • Well done for looking after yourself and putting you on the important list.....sometimes we forget!

  • How are you today? What's going on with your treatments

    now? Are those herbs helping a little?

  • Thankyou yikes for asking...she took an hour and a half taking my history and has gone away to figure out what she will give me I see her again next week. What she did do was use this weird thing called an arthrostim on my trigger points and all over my back. Google it cos it's too difficult to explain. I had the symptoms starting last night so took some painkillers and slept for 6 hours . So that was good. And I had porridge and heated frozen black and red currants from my last years crop with a dollop of plain yoghurt and some brown sugar so that made me feel like a good girl. The treatment left me very achy today....but I feel a Little more positive. I sort of cope for a while then it suddenly gets overwhelming and panicky. Hope all is well with you honey x x x

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