Any information??

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I suffer from severe restless leg syndrome and have tried magnesium, madopar (which helps a little then stops working, then helps a little again), stalevo (which caused stomach cramps and general illness while taking them and aftet i stopped, sifrol (which gave me mouth ulcers) and was told to take clonazapam with the madopar that helped for a while but no longer does.

Nothing helps and the situation is complete lack of sleep! Before i could nap every so often but not now. My legs even get cramps. Exercise makes them worse. Sitting down makes them wose, as does laying down. When i stand they just ache a lot. Thr doctors tell me to "live with it" but i can't. It's too bad and getting worse. Can anyone please offer some assistance. Anything is appreciated. Thank you for taking time to read all of this. Regards

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  • Posted

    I feel your pain....I've been suffering from restless legs for 16 years.  I'm 37 years old and have been through a TON of medications.  I've taken Elavil which was completely ineffective, Cloneazepam, which worked but they had to keep increasing my dose until I was nearly lethargic all day, switched me to Neurontin which worked for awhile as well, then Gabapentin, then added Requip to it.  Most of these worked for a short period of time, but eventually stopped working.  Then my neurologist put me on Horizant with Requip which worked wonders.  The downside was that the side effects were making me crazy.  Literally crazy.  I would have conversations I couldn't remember, do things I had no recollection of and it just made me feel like I didn't care about anything anymore.  Somewhat laxidazical (sp?) attitude.  I'm now on a patch called Neupro and if I change it the same time everyday, it seems to work....most of the time.  It does itch and leave slight burn spots on my skin, but much better than the side effects from all the pills I"ve taken.  Hang in there.  I feel your pain.  It SUCKS to live with this.  Maybe you can suggest some of the routes I've taken to your doctor.  Not everyone experiences the same side effects so perhaps you'll have better luck than I.  I hope you can find some relief!!!

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    • Posted

      Thank you for your response.

      I am in Australia and the only medications the "doctors" here seem to know about and use for restless leg are the three for Parkinson's i mentioned and the clonaxapam.

      I can't sleep, and now it has started during the day as well, including cramps, i am literally at my wits end.

      I just can't do this anymore, especially with it getting worse.

      Even my son who is almost 24 has a slight form of it.

      Thank you forvthe information. I will take it in with me when i see a doctor and hopefully they will have heard of it and prescribe one that may work. It couldn't work any less!

      Again, thank you.


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  • Posted

    I take codeine sulfate - when that stops working, I will ask for methadone.  I so feel for you.  I once read an RLS newsletter that advised to eat a good diet and sleep more to reduce symptoms. Obviously, the writer doesn't know what RLS is!


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  • Posted

    Hi I sympathise completely- RLS is so hard to deal with. Mine got much worse once I hit 50 and now at 63 I couldn't lead a normal life withought medication. I take Pramipexole which works and calms everything down and enables me to sit for long periods and sleep without the constant urge to move! When I was diagnosed I was lucky that the doctor also suffered and this medication worked for her.

    My dosage has increased over the years but I'm still on a fairly low dose and haven't had any side effects. Good luck I hope you get sorted soon.

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