caret icon Back to all discussions

My RLS

Hello my RLS has never been officially diagnosed. I asked what it means when you have an uncontrollable urge to move your leg. I was told I have rls. After I was asked a few more basic questions like when dose it happen, how often dose it happen what have you done when you get these urge’s. After that I was placed on medication mirapax a very low dose of .05 mg one before bed time. Worked great for the first year then had to increase the medication to .10 at bed time. Things went ok for the next couple of years. I then suffered a back injury and a neck injury. As my back and neck deteriorated my rls got worse. I am now at .25 mg one in the afternoon one three hours before bed and one at bedtime. I am also experiencing uncontrolled movements in my arms and in my jaw. I have torn rotator’s cuff in my left shoulder and tears in my right. I have clamped down on my tongue unexpectedly and am very worried that one time I mite do serious damage to my tongue. I am now experiencing these what I call traveling pain in all parts of my body. I am truly believing I am going completely crazy as hen I explain what is happening I get a look of I am crazy or it is all in my mined. I really don’t think I am crazy as these things are really happening I have had MRI’s and the tears in my rotator cuff’s are there and the scares on my tongue are real. Am I crazy has anyone else had these experiences? I have an appointment with a sleep doctor and my neurologist in March as that is the soonest I can get in to see them and the sleep doctor is a televisit. Not holding out much luck can anyone help?

Thanks
Jeff

  1. Hello Jeff, sorry for the late response back, I've been struggling with major fatigue this month.


    First, let me say, IT'S NOT ALL IN YOUR HEAD!
    You clearly do have something going on, what it is, that's the mystery part. I am happy to hear that you do have an appointment with a sleep doctor as well as a neurologist, it does suck that you have to wait so long though.

    It may be that your body isn't responding that well to Mirapex, everyone's chemistry is so different so what works for one person may not work for another. It is also possible that your body has built up a tolerance to the medication. Has your doctor considered trying a Alpha-2-delta calcium channel ligands (gabapentin enacarbil, pregabalin, and gabapentin) type medication?

    Hang in there
    🥄🦄 Ray (Team member)

    or create an account to reply.