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Anyone with restless leg syndrome? Anyone with restless leg syndrome?

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Unread 10-01-2003, 02:00 PM
Anyone with restless leg syndrome?

Finally saw the sleep doc this morning (after a 6mth wait ) and he thinks I have restless leg syndrome....I am more tired when I wake up then when I went to sleep and my feet and legs are always just killing me....he has prescribed something called mirapex...he said that it is used in Parkinson's patients and to not freak out if the pharmacist asks if I have it.....?

He also thinks I may have sleep apnea and I have to spend a night in the hospital's sleep clinic on Nov 8th where they hook ya up to a bunch of monitors and watch you all night.

he also ordered about 12 different blood tests including a fasting glucose and he's checking my iron as well.....

all in all a very productive appt I wish my uro was like him....the only downside was he is the next suite over from my evil gyn partners who always keep their office door open....I was tempted to flip them the bird on my way by but I decided to just ignore the fact they existed instead

if anyone else has this and can share info on it or is taking the med can you let me know? thanks!
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Unread 10-01-2003, 02:51 PM

I also have Restless Leg syndrome (RLS) and have had it for years. For me (and for a lot of people) it's considered genetic. My Daddy had it too, as did his brother.

It can show signs early in life with "growing pains" in your legs. It usually progresses to cause symptoms that increase with age (usually bothersome after age 30), including the arms (some people miss that because of the name, they assume it's only present in the legs).

There is a great book that would help you understand this problem better and the treatments available. Please consider each treatment you try as some of them can increase symptoms for sufferers. Some of the home remedies are to take a hot bath before bed, exercise your legs (using leg stretching exercises that move the muscles) and even having someone pound on the backs of your legs (my DH has to do this sometimes until I'm bruised the next day, but it does help when it's bad). Walking helps, but of course you can't sleep that way, lol. If you do feel symptoms (burning, tingling, restlessness and twitching in your legs) get up and move around. It will not get better if you try to just sit there and wait. I also use Aleve at night when I go to bed to help ease the symptoms. This has helped me, but it isn't a long term solution to the problem. I only use this on the worst nights or when I've been without sleep too long. aware that certain medications will increase symptoms. I cannot take over-the-counter antihistamines, sleep medications and anti-nausea medications because it increases the symptoms for me.

Here's the name of the book:
"Sleep Thief" Restless Leg Syndrome, by Virginia N. Wilson

I got mine at

BTW, you've got an excellent doctor. Most doctors ignore the signs of RLS and/or aren't familiar enough with it to diagnosis it. He's also doing all the right test. Consider yourself lucky...a lot of people go for years without finding the right diagnosis and help.

PM me anytime if I can help you in any way, okay?

Unread 10-01-2003, 03:20 PM
Anyone with restless leg syndrome?

thanx so much for all the info Rita

I really like this doc, he's not much on the bedside manner but seems very thorough, whereas my GP, who I've been complaining to about my aching legs almost since my hyst just kept shruggin' it would've thought it might've crossed his mind?

I'll be checkin out that book for sure, am a little nervous about taking this Mirapex tonight but hopefully it will help AND I won't have a reaction to it (I'm super sensitive to some meds it seems).

thanks again!
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Unread 10-01-2003, 06:24 PM
Hi Gidge.......

I too have restless leg syndrome (also in my arms). I posted about this 6 months or so ago on these boards because I was going nuts with the inability to sleep. My mother and one of my sisters as well as my brother also have it which I didn't even know until recently.

Like Rita said, many Dr's don't even acknowledge it. I was lucky and found a DR who was willing to help me find a medication to help me sleep at night. I had tried over the counter sleep aids as well as rx sleep aids and they didn't work, it's not that I wasn't sleepy!!! but I couldn't stay still in order to sleep no matter how tired I was. My Dr and I tried a few different meds (but not the one that you are currently taking) until we tried Klonopin and it has done the trick for me beautifully. I only take it when I need it and I can usually tell a few hours before bedtime if I will need it because my arms and legs will have an achey feeling. I also can not take anti-histamines and many cold meds because they make the RLS worse. From the other people I have spoken with on RLS, klonopin seems to be a widely used med and most people get good results with it.

I have a friend who has not had such an easy time finding a Dr who recognizes RLS and he insists that she take more vitamins and supplements and eat bananas and it's not helping !!! I really feel badly for her because it is a miserable thing to suffer with, so we ARE lucky that our Dr's are at least willing to recognize it and treat us accordingly. (Unfortunatley she doesn't live in my area.)

I wish you the best of luck with the med. Let us know how it works for you.

Unread 10-02-2003, 09:27 AM
Anyone with restless leg syndrome?

I guess the Klonapin must be one of the ones he said we'd try if I didn't end up having the apnea thing....he said there were some he couldn't give right now because if I did have apnea it would be bad?

I went to try and fill the prescription for the mirapex stuff and they were out of stock (?) so I have to go back today, I'm thinking I may wait until Fri night to try it just in case it makes me feel weird at first anyways....

thanks for sharing the info for me, I'd also be interested in hearing from anyone who's been in a sleep study and what to expect the night I'm monitored, I'm quite nervous about that, hopefully I don't do anything to embarass myself in my sleep
Unread 10-02-2003, 09:37 AM
Anyone with restless leg syndrome?

oh and I was looking at my requisition for the bloodwork (it's fasting bloodwork so I"m having it done Sat morning) and these are some of the things on it, I've never heard of some of them,
hemoglobin, TSH, oxidizing calcium, urea, creatine, fasting glucose, ferritin?....can't remember what else....anyone know what they're for?
Unread 10-02-2003, 09:42 AM

I also have restless leg syndrome. This summer it was so bad that my DH got very little sleep. I mentioned this to my message therapist and she recommended rubbing my legs with sesame oil.
It sounded nuts, but I was desperate. I found some at the grocery store that wasn't toasted, so it has very little scent and I added some tea rose oil to cover what scent was there.
I use it when I notice my skin is very dry, a couple of hours before bed so it soaks in to me not my sheets.
It seems to help, maybe it's placebo effect, but we both sleep better when I remember to use it and when I am willing to go through the bother. (It is a bother).
Good luck,
Unread 10-02-2003, 11:00 AM
sleep study

Hey there. I forced my DH to have the sleep study done as I was getting NO SLEEP with him gagging and stopping breathing at night. He said it was difficult falling asleep because they put these electrodes all over you...head, chest, etc. He finally did fall asleep and the next morning he dressed and went to work. It's nothing to be nervous about, really!
Unread 10-02-2003, 11:12 AM
Anyone with restless leg syndrome?

Cool Sheila, good to know!!! (and good to see ya too! )
Unread 10-03-2003, 08:46 AM
Anyone with restless leg syndrome?

Sweet ((((((Gidge))))))

Long time eh? Sorry I haven't been around much these past few months.

I was dx with RLS approx 6-8 months ago. I am taking Mirapex too. What dose does your doc have you on? I take 0.25 mg at bedtime. I noticed a real difference for the first few months. Lately, it seems that my leg/arm twitching is back. This could be related to something else...But it does feel awfully familiar.

The good thing about this med (for me) was that I didn't have any reaction to it! I don't think I'm as sensitive to as many meds as you are...But I have had to stop so many different medications due to allergic reactions.

I've also had a sleep study done, and am supposed to have another one done soon - keep putting it off. They aren't that bad really - but it is difficult to sleep with all of those gizmo's attached to you. I would suggest getting as little sleep possible the night before so you will be tired. At the place I had mine done, they let me read for a bit, but it was 'lights out' very early...and they had us all up and out by 6am! They didn't find that I had sleep apnea, but said they wanted to check me in for a sleep study every six months. I haven't been very good about doing this because it is hard to fit everything in! All of my other appointments are hard enough to keep up with

Along with the other sisters, I understand how painful/disruptive RLS is. My dh looked at me with 3 heads when I told him about the diagnosis - especially the name of it! But when I described the symptoms he realized that it was real.

I wish you all the best with the sleep study and the meds. Please feel free to e-mail me anytime my dear. I'm not on-line as much as I used to be, but do check my e-mails fairly regularly.

Sending you Love and S

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