I have had RLS but in the last four nights it has tripled in force. Now my whole body twitches, just like I was struck by a lightning bolt. It makes my pain even more severe and of course I can't sleep. Has anyone else experienced this? How did you stop it??? http://www.healthboards.com/ubb/angel.gif

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Glenda And Bill

Hi Glenda,

Is the twitching continuous? On occasion, I have jolts involving my legs. They will jerk suddenly and stop, and as far as I know that's the end of it. I'm aware of it happening just as I'm about to doze off, in that sleepy twilight state. If it happens during my sleep, I'm not aware of that. There's no pain associated with the jerks but it's startling when it occurs. Now, when other parts of my body are in significant pain and this happens, then of course the jerking does make the pain intensify. It doesn't happen to me frequently enough to be troubling; therefore, I haven't been concerned about it. Lately, I have been awakened by severe leg cramps, primarily in my right leg. I've had this infrequently off and on for a long time, but it seems to have increased in frequency over the past few weeks. And I have no idea why it is happening more frequently now. If your twitching is keeping you awake and causing increased pain, then it's definitely something to discuss with your doctor. I have heard of others taking quinine for RLS. Have you ever heard of that before? I don't know anything about the benefits of taking it, so, it may be something you might care to check out.

I hope you find a resolution to this problem soon, and then get some decent sleep time in.

Take gentle care,
Midnite

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If you keep a green bough in your heart, the singing bird will come.

Midnite,
Hey that should be my name or insomniac... :grin: I have taken quinine before for leg cramps. It helped for a while. I have RLS but this is worse and just started getting bad. I know what you mean about why is this happening now to this leg. Usually my jumping would be the leg that was the worse that day but its now both. I have FMS, CFS, osteoarthritis, ^BP, depression, insulin resistance, etc. so I can never tell which one is causing it. I called my Dr. but he is out of town for a few days. He tried me on muscle relaxers (soma and flexaril) but neither of those worked either.

Thanks for the info. I love your "thought" at the end of your message. Very stirring. I am a freelance writer so I love to see things like that. God bless and stay well.

http://www.healthboards.com/ubb/angel.gif

Hey Glenda and Bill, I've also heard that low dose es of anti seizure drugs can help with RLS. You might ask your doc about this. He might wasnt to give you something to help you get a full nights sleep, like ambein or sonata,etc.. Just a thought.

I can tell you all about twitching as I have it all over! My head will jerk back at the neck, myhands jerk at the wrists and sometimes if they are in the right place for it to happen I hit myself! I have also experienced my whole body doing a twitch at the same time and it scares me so bad! My lower body twitches also and it is a much different feeling than the restless leg syndrom. Going back to my roomie on thursday and hopeing to find some answers somwhere. Guess this is just a part of the Firbo! Good Luck

I looked up possible side effects of some meds I'm taking, and some of the anti-deprssants said they can cause "involuntary muscle movement". You might want to look up your meds. I get twitching in wierd places; sometimes my whole stomach twitches, or I get that falling off the bed sensation when going to sleep, but thank goodness no RLS.

[This message has been edited by debabc (edited 07-09-2003).]

Thanks guys! I have been taking the same meds for years
except for two that I have been taking since November so I don't think its my meds. Last night was a good night. Just some small RLS before dozing. But yesterday I did nothing except sit in the recliner and read and watch TV. Today I vacumned the whole house and actually cooked a big supper. So, we will see what happens tonight. I actually dread going to bed.
I take neurontin which is an anti=seziure med but I take it for chronic pain. My sister in law heard about a new drug for RLS called Requit that just came out. No one has heard of it yet. So maybe that will be something I can try. I can't go to the Dr. except when I am dying cause I have no insurance and no money. I am tryng desperately to get my disability. I worked as an Office Manager for 19 years in the medical field.
So, I have heard of almost every kind of med for every kind of disease and some used for stuff other than what it was intended for. Anyway.... I will suffer it out a few more nights until my Dr. comes back and I can talk to his office manager. I actually wrote him a letter and hope he gets it as soon as he gets back.
Hope everyone is feeling OK today. http://www.healthboards.com/ubb/dance.gif Thanks for all the feedback. I love talking to you guys cause you really understand. People out in the "world" don't understand at all. :P Gotta go look around the board. http://www.healthboards.com/ubb/angel.gif

Hi Glenda,

Have you tried running an internet search for twitching or twitching muscles?



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If you keep a green bough in your heart, the singing bird will come.

Hey Midnite, http://www.healthboards.com/ubb/wave.gif No, but I will while I am on here.
I have read all about RLS. I think its a mystery to everyone. I keep a journal and I haven't noticed anything to really trigger it. Maybe its climbing stairs. My mother in law has alot of steps to her house but I use a cane and go slow and my husband helps me. But that could be it. Who knows???? http://www.healthboards.com/ubb/mad.gif
Anyway, how are you doing? Are you doing pretty good with your fibro? Do you work? I worked for 36 yrs now I can't do anything. It is very frustrating and very depressing. I feel like such a failure. But my husband says I am here for a reason. He is such a sweetie. Take care and keep in touch. http://www.healthboards.com/ubb/angel.gif

I was going nuts with RLS. I used to take Vitamin E, calcium and magnesium before I went to bed, this helped for a while, but then the RLS got worse. My doctor put me on Mirapex, which is also used to treat Parkinson's Disease. It helped a great deal for about a year then the RLS came back with a vengeance. I've just been changed from the Mirapex to Neurotin, it is helping! I slept really well for the last week since I made the change. Good luck

Painsucks,
How many mgs of neurontin do you take? I am on 600mg.
A nurse practictioner gave it to me and she wasn't sure how much we should go. It hasn't helped with the RLS. Thanks for the info. Take care. Yes, I tried the vitamin E and all the other stuff, muscle relaxers, spasm pills, etc Nothing helped.

Take care! http://www.healthboards.com/ubb/angel.gif

Some people get really good results with an old standby, Klonopin. The doctor tried requip Parkinson med) to also help with energy and in the place of the Klonopin. I didn't get the extra energy, and isn't quite as good as the klonopin, at least for me. I also find I have more twitch if I don't get enough sleep. Sort of like I am too exhausted to go to sleep.

Alice

Dear Glenda/Bill,

I'm taking 600 mg of Neurotin. If the Neurotin isn't helping your RLS, see if your doctor will give you some Mirapex, it worked really well for me for about a year. One other thing that you might try, I'm taking 1 of my 300 mg Neurotin along with 1 Flexeril and 2 tylenol pm about 1 -2 hours before I go to bed, well, at least about the time I settle in for the evening to watch a bit of tv before going to bed. That seems to help me unwind and get sleepy, then I take another 300 mg of Neurotin and one more tylenol pm right before I get into bed, I can usually drift off to sleep pretty easily that way, not too much tossing and turning and kicking! I know it sounds like a lot of drugs (because it is) but if I use this little "formula" I have better nights. I hope you can find some relief, I know how difficult it is to keep functioning without sleep. Take care.

I take mag. at night, a multivitamin in am w/calcium enriched oj (a little so blood sugar does not get wacky) quinine water with dinner, omega 3 oil, potassium salt substitute, eliminated aspartame from diet; now use Splenda, I do not use a microwave, short tepid showers, keep well hydrated-double filter system, dinner early-avoid nightshade vegys like eggplant, tomato. I'll incorporate cabbage into diet-slaw or boiled...I take medications. It depends on the severity of the flare and what works for you. Each case is different.
ps:
I will be trying (1 day)of 1 gal. of distilled water with the juice of lemons to see if that detoxify's the liver because I take nsaids daily and have ezcema flares etc. Warning: People with blood sugar problems and other illnesses need to consult their doctor about this prior to trying it.

ps: A few yrs ago took clonzapam and dizapam (spelling?). At the time this neuro gave me the rx for this she said she was not telling me I had ms. I don't remember the affect it had if any.


[This message has been edited by Gemi (edited 10-09-2003).]

RN-Paramedic,

Thank you so much. I will ask my Dr.about that. Now, since I am staying off my legs more I don't have it everynight. But if I do anything at all during the day then it is horrible and makes my pain so much worse. Thanks for the suggestion. http://www.healthboards.com/ubb/angel.gif

Glenda/Bill I have that problem all the time RLS and muscle spasms, those are bad enough but when I really stressed or tired I have muscle contractions, hard ones so much leg will come up off the bed or my arm wil fly up in the air, the worst ones are when I have one in the trunk of my body and it lifts me plum up off the bed, if there was a camera on me watching they would really wonder what was going on under the covers, its really annoying but I have to LOL.

SSS

Glenda/Bill Did I mention I take a Xanx to help control my muscle spasams and contractions.

SSS