Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 Just my own take here, on what may be two different " versions " of RLS. Some time ago when I was making my own mito dx (EVENTUALLY confirmed by docs) I listed and then searched online for all my various symptoms. I have all my life sort of twitched or shaken my feet, especially when trying to fall asleep but also at other times when sitting. When I was a child my father called my frequent leg pains " growing pains " and I always thought that my shaking was to somewhat minimize this ache/pain. Aspirin helped me to fall asleep. My online search a few years ago turned up the term " restless leg syndrome " which seemed to describe what I had. Both these online descriptions AND my own experience is that this was basically voluntary, i.e. I could willfully STOP it whenever I wanted, but for some reason it just HAPPENED when I wasn't thinking about it. At any rate, a couple of online sources I just reviewed link RLS to peripheral neuropathy (PN). BTW I NOW feel that my foot shaking is somehow linked to my feet pains (PN) in that it seems to alleviate the pain and lets me fall asleep. I also sometimes do this while sitting; people sometimes have to ask me to stop vibrating my chair or the table, which I don't notice that I'm doing. :-) Another data point of unknown relevance is that my son who has ADHD, used to (when he was a child) do this same kind of shaking, of both his feet AND his hands, when sitting or standing. He never could explain exactly WHY he did it, but he could easily stop it for a time if asked to. I should add that I had/have (undiagnosed, milder) ADHD since childhood, and that MY foot-shaking began early on, long before any mito symptoms showed. , you seem to be saying that your version is entirely involuntary and that you can't stop it by choice. I therefore understand that " my " RLS is probably NOT what you are talking about, which is more along the line of myoclonus, if I understand Laurie right. But I just thought I'd bring it up, in case there's some confusion I could head off, especially regarding online terminology. I hope I haven't ADDED to the confusion. Steve D. Date: Sun, 16 Jan 2005 21:20:35 -0500 Subject: Re: Restless Leg Syndrome in full force! It is nerves that are firing even when not told to do so. I take Lamictal and that has reduced the myoclonus a great deal. I also do gentle stretching in the morning when my body is rested. I do have Quinine to take when needed. It makes my bowels loose, so I only take it when necessary. My myoclonus and cramping are worse when I have been busy or overdone. When I am able to rest and get some extra sleep over the week-end, then it is not as bad. I also have to keep a tight balance on my magnesium, calcium, potassium and phosphorus. I spill these things through the kidneys, so I have to have labs every three months or when the myoclonus and cramping get worse. I know how irritating they can be. I just hate it when I have to jump out of bed to put pressure on the bottoms of my feet to hopefully eliminate a cramp. The other night, the front of my ankle was in spasm and the pain was horrible. I couldn't get rid of it by walking on it, so I bent my knee to get my leg onto the bed to rub it. That caused a cramp in the side of my upper leg. For me, I think it is metabolically based. The Lamictal has done the most for me in this area. laurie Date: Sun, 16 Jan 2005 16:49:32 -0000 Subject: Re: Restless Leg Syndrome in full force! Thanks for the info. I will ask my doc about it tomorrow. I hope that I will see an improvement today just by resting. It is the oddest feeling to look down at your legs and see them " moving and twitching " all by themselves. It is actually quite annoying along with uncomfortable. Chrsitine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 Steve, Thanks for sharing this info with us. I am also beginning to question the dx of RLS for my sympotms as well. I can look down and see the muscle twitching and moving at all times. Sometimes with significant pain and others with no pain at all. I ran a search yesterday for RLS and read some stuff that just didn't seem to quite fit what I was feeling or how I was interpreting the sensations. Hope my Doc is " sitting in this thinking chair with the book of Clues " that he has been compiling since I " literally stumbled " into his office 8 yrs ago. Sorry for the Blues Clues reference but I just couldn't resist . > Just my own take here, on what may be two different " versions " of RLS. Some > time ago when I was making my own mito dx (EVENTUALLY confirmed by docs) I > listed and then searched online for all my various symptoms. > > I have all my life sort of twitched or shaken my feet, especially when > trying to fall asleep but also at other times when sitting. When I was a > child my father called my frequent leg pains " growing pains " and I always > thought that my shaking was to somewhat minimize this ache/pain. Aspirin > helped me to fall asleep. > > My online search a few years ago turned up the term " restless leg syndrome " > which seemed to describe what I had. Both these online descriptions AND my > own experience is that this was basically voluntary, i.e. I could willfully > STOP it whenever I wanted, but for some reason it just HAPPENED when I > wasn't thinking about it. At any rate, a couple of online sources I just > reviewed link RLS to peripheral neuropathy (PN). BTW I NOW feel that my foot > shaking is somehow linked to my feet pains (PN) in that it seems to > alleviate the pain and lets me fall asleep. I also sometimes do this while > sitting; people sometimes have to ask me to stop vibrating my chair or the > table, which I don't notice that I'm doing. :-) > > Another data point of unknown relevance is that my son who has ADHD, used to > (when he was a child) do this same kind of shaking, of both his feet AND his > hands, when sitting or standing. He never could explain exactly WHY he did > it, but he could easily stop it for a time if asked to. I should add that I > had/have (undiagnosed, milder) ADHD since childhood, and that MY > foot-shaking began early on, long before any mito symptoms showed. > > , you seem to be saying that your version is entirely involuntary > and that you can't stop it by choice. I therefore understand that " my " RLS > is probably NOT what you are talking about, which is more along the line of > myoclonus, if I understand Laurie right. But I just thought I'd bring it up, > in case there's some confusion I could head off, especially regarding online > terminology. I hope I haven't ADDED to the confusion. > > Steve D. > > Date: Sun, 16 Jan 2005 21:20:35 -0500 > From: Laureta Fitzgerald > Subject: Re: Restless Leg Syndrome in full force! > > > It is nerves that are firing even when not told to do so. I take Lamictal > and that has reduced the myoclonus a great deal. I also do gentle stretching > in the morning when my body is rested. I do have Quinine to take when > needed. It makes my bowels loose, so I only take it when necessary. My > myoclonus and cramping are worse when I have been busy or overdone. When I > am able to rest and get some extra sleep over the week-end, then it is not > as bad. I also have to keep a tight balance on my magnesium, calcium, > potassium and phosphorus. I spill these things through the kidneys, so I > have to have labs every three months or when the myoclonus and cramping get > worse. I know how irritating they can be. I just hate it when I have to jump > out of bed to put pressure on the bottoms of my feet to hopefully eliminate > a cramp. The other night, the front of my ankle was in spasm and the pain > was horrible. I couldn't get rid of it by walking on it, so I bent my knee > to get my leg onto the bed to rub it. That caused a cramp in the side of my > upper leg. For me, I think it is metabolically based. The Lamictal has done > the most for me in this area. > laurie > > Date: Sun, 16 Jan 2005 16:49:32 -0000 > From: " mitomomtoo " > Subject: Re: Restless Leg Syndrome in full force! > > > Thanks for the info. I will ask my doc about it tomorrow. I hope that > I will see an improvement today just by resting. It is the oddest > feeling to look down at your legs and see them " moving and twitching " > all by themselves. It is actually quite annoying along with > uncomfortable. > Chrsitine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 Steve, Thanks for sharing this info with us. I am also beginning to question the dx of RLS for my sympotms as well. I can look down and see the muscle twitching and moving at all times. Sometimes with significant pain and others with no pain at all. I ran a search yesterday for RLS and read some stuff that just didn't seem to quite fit what I was feeling or how I was interpreting the sensations. Hope my Doc is " sitting in this thinking chair with the book of Clues " that he has been compiling since I " literally stumbled " into his office 8 yrs ago. Sorry for the Blues Clues reference but I just couldn't resist . > Just my own take here, on what may be two different " versions " of RLS. Some > time ago when I was making my own mito dx (EVENTUALLY confirmed by docs) I > listed and then searched online for all my various symptoms. > > I have all my life sort of twitched or shaken my feet, especially when > trying to fall asleep but also at other times when sitting. When I was a > child my father called my frequent leg pains " growing pains " and I always > thought that my shaking was to somewhat minimize this ache/pain. Aspirin > helped me to fall asleep. > > My online search a few years ago turned up the term " restless leg syndrome " > which seemed to describe what I had. Both these online descriptions AND my > own experience is that this was basically voluntary, i.e. I could willfully > STOP it whenever I wanted, but for some reason it just HAPPENED when I > wasn't thinking about it. At any rate, a couple of online sources I just > reviewed link RLS to peripheral neuropathy (PN). BTW I NOW feel that my foot > shaking is somehow linked to my feet pains (PN) in that it seems to > alleviate the pain and lets me fall asleep. I also sometimes do this while > sitting; people sometimes have to ask me to stop vibrating my chair or the > table, which I don't notice that I'm doing. :-) > > Another data point of unknown relevance is that my son who has ADHD, used to > (when he was a child) do this same kind of shaking, of both his feet AND his > hands, when sitting or standing. He never could explain exactly WHY he did > it, but he could easily stop it for a time if asked to. I should add that I > had/have (undiagnosed, milder) ADHD since childhood, and that MY > foot-shaking began early on, long before any mito symptoms showed. > > , you seem to be saying that your version is entirely involuntary > and that you can't stop it by choice. I therefore understand that " my " RLS > is probably NOT what you are talking about, which is more along the line of > myoclonus, if I understand Laurie right. But I just thought I'd bring it up, > in case there's some confusion I could head off, especially regarding online > terminology. I hope I haven't ADDED to the confusion. > > Steve D. > > Date: Sun, 16 Jan 2005 21:20:35 -0500 > From: Laureta Fitzgerald > Subject: Re: Restless Leg Syndrome in full force! > > > It is nerves that are firing even when not told to do so. I take Lamictal > and that has reduced the myoclonus a great deal. I also do gentle stretching > in the morning when my body is rested. I do have Quinine to take when > needed. It makes my bowels loose, so I only take it when necessary. My > myoclonus and cramping are worse when I have been busy or overdone. When I > am able to rest and get some extra sleep over the week-end, then it is not > as bad. I also have to keep a tight balance on my magnesium, calcium, > potassium and phosphorus. I spill these things through the kidneys, so I > have to have labs every three months or when the myoclonus and cramping get > worse. I know how irritating they can be. I just hate it when I have to jump > out of bed to put pressure on the bottoms of my feet to hopefully eliminate > a cramp. The other night, the front of my ankle was in spasm and the pain > was horrible. I couldn't get rid of it by walking on it, so I bent my knee > to get my leg onto the bed to rub it. That caused a cramp in the side of my > upper leg. For me, I think it is metabolically based. The Lamictal has done > the most for me in this area. > laurie > > Date: Sun, 16 Jan 2005 16:49:32 -0000 > From: " mitomomtoo " > Subject: Re: Restless Leg Syndrome in full force! > > > Thanks for the info. I will ask my doc about it tomorrow. I hope that > I will see an improvement today just by resting. It is the oddest > feeling to look down at your legs and see them " moving and twitching " > all by themselves. It is actually quite annoying along with > uncomfortable. > Chrsitine Quote Link to comment Share on other sites More sharing options...
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