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I'm having a REALLY hard time with this RLS............ I'm having a REALLY hard time with this RLS............

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Unread 05-06-2003, 11:32 AM
I'm having a REALLY hard time with this RLS............

I found this thread interesting as during 2 recent bouts of illness I developed this awful twitching in my leg. It only happened when sitting or laying down. I never thought much about it until I read this thread. I wonder if it was a bout of RLS brought on by my illness perhaps???

During my last illness I had an appt for some neurological tests and the nurse suggested that I was low on potassium so on the way home I ate some bananas and the twitching stopped. I've been eating a banana a day since than.

to all the sisters that are having to deal with this on an ongoing basis. I know it was driving me absolutely crazy for the few days that I had the symptoms.
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Unread 05-06-2003, 11:46 AM


I am so sorry that you are suffering. I hope you find some relief soon. I take Elavil 100mg @ bedtime and it has been a big help. Around the time that I was DX with MPS/FMS I wasn't getting any sleep due to aching, twitching legs (I guess that is RLS). It was unbearable!! I started on 50 mg, but quickly realized that wasn't enough. I would have to agree with your doctor in saying 25mg isn't enough to help anything. Also, I use to work for a cardiologist and he RX quinine quite frequently for RLS. Many patients sang it's praises. Let us know how your doctor's appointment went today!
Unread 05-06-2003, 12:15 PM
Hi Ladies.......

Thanks for your 's and input.

I wish I had good news to share but I don't. My appt. today was with my Surgeon, he is the one who suggested upping my dosage of the elavil to 50 mg per night, I told him that didn't help and that I had quit taking it. He agreed that if it wasn't helping that there was no need to take it BUT this isn't his area of medicine. He has heard of Klonopin but doesnt know much about it and therefore wasnt comfortable rxing it. I really dont blame him. But that puts me at square one.

I called my GP and they cant see me until the end of the week so it looks like I have to suffer out the rest of the week. I know one of the nurses in his practice so I left a message for her in hopes she could talk to him and ahve him call me in a few to try it out. Keep your fingers crossed for me.

Lots of 's to you gals. Thanks for the support. At a loss and need some sleep.

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Unread 05-06-2003, 12:16 PM
I'm having a REALLY hard time with this RLS............


RLS is one of my problems too. I am not taking anything for it...and I am wondering if I should be. This morning I woke up to a bed that was very well made yesterday....sheets un-tucked, the duvet all over the place. I tossed and turned all night, and today feel like I've been run over by an 18 wheeler. I never realized this condition played a big part in how I feel during the day, until very recently. I always blamed it on the FMS/CFS.

I am going to talk with my doc at my next appointment about trying something for the RLS. I am sorry that so many of you are suffering...but wanted to thank you all for sharing.

((Dawn)) I hope your appointment goes well today.

Sending many S
Unread 05-06-2003, 12:22 PM
I'm having a REALLY hard time with this RLS............

Dawn, sorry to hear you are having such maddening troubles. I found a support website for RLS for you:


There's a list of medications used to treat RLS here:


Lots of info here:

Hope this helps. Lots of s to you!
Unread 05-06-2003, 12:23 PM

You and I must have been posting at the same time.

I'm sorry. I know it's not at all funny.......but I did chuckle at your comment about your bed. Mine is the same way.......I make it every morning and tuck all the sheets in nicely under the mattress and in the mornings it looks like 5 kids have been jumping on it, I'm usually lucky these days if my fitted sheet is still on. I think I get more exercise at night then I do during the day.

Good luck with your Dr, I hope he is able to give you something that helps. Lots of and thanks for the good wishes.
Unread 05-06-2003, 06:50 PM
I'm having a REALLY hard time with this RLS............


It is my experience that the doctors who know the most about precription drugs and their various uses is the psychiatrist. Klonopin is prescribed for anxiety as well as for a host of other conditions. You mentioned that your doctor was not comfortable with prescribing it. I have been visiting a psychiatrist for the past few years due to panic attacks for which I take Xanax and Zoloft. My psychiatrist doesn't waste my time nor his by trying to find the "psychological issues behind my physical conditions" (albeit there may be some); he just discusses various treatment options and their side effects. Then I choose, and he prescribes.

Unread 05-06-2003, 10:59 PM
I'm having a REALLY hard time with this RLS............

Hi Dawn,

I've been doing some reading the past couple of days and am surprised at how many drugs are used for RLS. Your doctor wasn't crazy for prescribing Elavil. It has been used for RLS. Different drugs affect different people different ways. It is a trial and error thing. The kind of doctor who would best know about what to use for RLS is a Sleep Specialist. In my experience doctors tend to know their own specialty and not much else, so you may not find the best help with your family doctor, but if you do some reasearch on the internet you could take some information to him and maybe that could be a start toward treatment that might work.

Hope things work out. This must be so frustrating for you.
Unread 05-07-2003, 08:34 AM
I'm having a REALLY hard time with this RLS............

Hi Dawn,
Sorry to hear about your rls. My mother-inlaw takes quinine sp? for hers and it helps alot. I have to run got a Dr. appoint., but I hope this is an alternative for you. Akasha-Debi
Unread 05-07-2003, 10:36 AM
I'm having a REALLY hard time with this RLS............


Guess what? I finally had a good nights And the bed didn't look as if a tornado ripped through it. My legs are also feeling better today. This is all so very strange eh?

I think that stress is a biggy for me. I find that all my diseases/syndromes are much worse when I'm stressed out. I remember a Rheumy telling dh and I that I should avoid stress. Oh yeah...as if that's an option.

Please let us know what your doc has to say. Sending you lots of

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