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    Restless legs? Something else?

    I've been dealing with what seems to be RLS for quite some time now. It feels almost like an achy feeling, but with an urge to move and/or tense up my legs. If I'm lying down or sitting I'll move them around a lot, shake, tense them up, etc. If I'm standing I may rock or pace. It happens at any time of day, but might be more prominent at rest. It's often worse during my "time of the month." Sometimes the restless feeling can spread throughout other areas of my body.

    One thing that makes me wonder if it's not RLS is that it doesn't seem to be relieved much by the movement. Another thing I experience is mild tightness feeling in my calves and behind my knees. I'm not sure if it's tied in with the RLS or is something else all together as it's not always occurring at the same time (though it sometimes is).

    We tried checking my iron (it was slightly low, but iron supplements didn't help the symptoms). I'm taking some magnesium already. My neuro had my try 300 mg of gabapentin (neurontin) at bedtime. When that didn't work, she increased it to 300 mg 3 times a day. I've been on that for about a month, and it's still bothering me.

    Any thoughts, ideas, or suggestions? Could there be something I'm missing/could this be something else? I'm not sure if this is tied to lesions or not, but I do have brain lesions, no cervical lesions, but they've never done and MRI on my T spine.

    #2
    It really sounds like spasticity.

    Do YOU get good sleep?

    I have found over the years that although some treatments etc can alleviate some spasticity the most effective is good sleep including REM sleep.

    It all goes to pot if i don't get good quality sleep.
    Cramps, tingles, pain and twitches big time.
    They don't go away completely but are much less severe.

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      #3
      Do YOU get good sleep?
      It's hit or miss, but mostly ok-ish. I'm not great about getting to bed at a decent hour (my bad habit). When I do go to sleep, most of the time I sleep ok, but occasionally I go through bouts of waking up periodically throughout the night/very early morning.

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        #4
        I agree it sounds like spasticity, more than RLS.

        I use a simple rope to describe muscle tone & spasticity.



        A rope is naturally loose and should be able flexible like a jump rope. Your muscles without any tone are limp as well. Normally your muscles have a certain amount of tone to maintain your postures, open a door, turn your head, etc, etc.


        Too little tone and you are unable to easily do things because your muscles are mushy. Think about trying to shoot pool billiards) or pretend to play baseball and swing a rope bat. That doesn't work well because the rope doesn't have enough tone.


        Too much tone and your muscles are contracting too much and reduces your range of motion. The more tone the smaller motion range you have. Take the rope that you can jump with and tighten it enough and it can support a human (tight rope walker). For us, that makes every day tasks exhausting be we are fighting against ourselves. Spasticity can affect the entire muscle or specific points causing spasms, cramping, knots, etc.

        See if the following links are helpful:

        https://www.nationalmssociety.org/Sy...oms/Spasticity
        https://www.mstrust.org.uk/a-z/spasticity-and-spasms

        I wish you well...

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          #5
          Thank you Marco, that is really helpful information. I'm beginning to wonder (based on how it feels) if it might be a little of both (oh joy). It's definitely very minor spasticity if at all (doesn't cause me any trouble moving, but it does feel tight/painful).

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            #6
            I have very severe RLS. Right now Iím taking 4
            -300mg/day gabapentin. It helps but doesnít get rid of it completely.

            The tightness that you describe sounds like spacisity to me, too. Has your neurologist suggested baclofen? That is another med I take.

            You may very well have both RLS AND spasticity. At least I do. The RLS is extreme agony. When it first started my legs were so desperate to move that I would bang my feet at every stoplight when I was driving. I had to stop every 100 feet, get out of the car and run around. Needless to say it took a long time to get anywhere. My doctor gave me Requip and it helped quite a bit but eventually stopped working and upset my stomach. This was a year before the MS dx.

            So I hope you can find a solution. If you are taking baclofen and neurontin and still have the symptoms sometimes they resort to narcotics. But these days they are practically illegal.

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