RLS aka WTF suferer since I was about 6 years old. Now I am 44.

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Let me start by saying when I was little I did not want to tell my Mom how much pain I was in, so I tied "tube sox" yes it was the 70s over top of my knees to cut the circulation out. As I reached my teen years, I discovered "Icy Hot" I was allergic, did not help. As I got in my late teens and 20s I foud out tha an extremely HOT bath would work as long as you stayed in the tub. As soon as my body went back to normal temp. the pain came back. I would have bed sores by morning from tossing and turning. Well in my late 30s to 40s if I did not catch the pain in time it moved to my arms. And once it does that your pretty much screwed unless you have some "Serious Narcotics" Which I chose not to do these days. I have tried EVERTHING IMAGINABLE. and I mean everthing. Recently my doc put me on Requip, it sucked and made me feel worse than ever in everyway possible. So now I am doing Mirapex, I have not had one bad day or night since. I really thought I was going to have to cut my limbs off the pain was so ridiculous. I hope this helps someone. This type of pain is the worst in the worlk to me and I have had some serious injuries in my life.

 

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  • Posted

    Blimey since  you were 6! Thats really unfair! I am glad you have at last found some relief! I have found lately that as long as I keep on top if my pain medication the restless legs dont start but if I dont I end up having to take oramorph
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  • Posted

    Hi there 

    my problem isn't really restless legs is the burning in the lower half of my legs at night and sometimes in the day . Have had an MRI scan and have been told I have transverse myelitis which when I googled it said MS. I have seen the consultant again last week and she says MS  can't be ruled out though I have no other symptoms. She says I have a. 50 pct chance  of having it. Not news I expected .  I am now waiting to have a lumbar puncture to find out for sure . I take two 200 mg tablets pregabiln , do they help no I don't think so. Have been on lots and tbh they made me go loopy , loss of balance , nightmares you name it I had it .there is an ms centre in the town where I live so went to see them last week. What lovely people . They have oxygen chambers which help ms patients for inflammation of the spine which I have and so have been offered 20 sessions if one hour at a time of pure oxygen and so going to book it up tomorrow. Will it hell who knows eh but will try anything to be able to get back to normal and sleep at night . I have had this for a year now and the thought of living withis for few is not a nice thought . Hope yours is soon under control.

     

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    • Posted

      This sounds a bit extreme on your doctors behalf. Try the MIRAPEX first before the docs go digging into your body and your pocketbook. I have tried EVERTHING and I mean everything. Yes very strong opiates help the pain, but then they are an entirely different demon. The mirapex works. You may have to take 4 at bedtime and sometimes 1 or 2 during the day if you feel it coming on. The key is to catch it before the pain gets too rough. 
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  • Posted

    I was told by a doctor years ago it was all in my head!!

    i have had to put up with this until a few months wen I went to another doctor and tried to explain the symptoms and as soon as I did he put me on ripinirole!!

    i just wanted to cut my legs off!! I can't believe so many people have this and my heart goes out to everyone who has this!

    ive had to have the dose put up so just hope gonna work! I'm watching the clock as it's driving me mad right now but want to take as late as possible as it wears off!!

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    • Posted

      Is this Mirapex? If so, you can take these up to 4 at bedtime. I have suffered far too long and I am telling you this is GOD sent to my life.

      Try it, and get into a very hot bath if possible. This is the only other thing that ever worked. Even though once your body temp goes back down the pain is still there. But the Medication should work. take 4 of them

       

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  • Posted

    Hi do out have RLS or the burning that I have 

    . Not many people seem to have my symptoms . Think I am unique lol. Just like you some nights want to cut my legs off 

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    • Posted

      Christine. I understand the burning. It ued to feel like lava running thru my body. The WORST't thing in the world to me is this horrific thing. That;'s why I call it WTF because RLS just does not justify the intensity of this pain.  I cant take any sorts of opiots sand they are the ONLY thing I have ever used that got rid of the pain. But I am telling you try the Mirapex. You may need to take more than one, I take 2 to  4 at bedtime and I have zero pain. 
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