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  • RLS, Mirapex, Hormones, & Stress- Do You Have This Problem, Too?

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    Old 12-05-2002, 08:25 AM   #1
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    Unhappy RLS, Mirapex, Hormones, & Stress- Do You Have This Problem, Too?

    This is a long post with some background information, so bear with me!

    I am a 22 year old female who has fibromyalgia. In September, my rheumatologist finally convinced me to go to a sleep clinic because he said that sleep disorders and fibromyalgia are often linked. I went; I slept; I found out that I have Restless Legs.
    Although my twitches were waking me up almost 28 times an hour, my symptoms were almost nonexistant. Occasionally, I'd feel a slight twitch, but I thought it was normal. It never woke me up (that I realized/recognized).

    Anyway, my "sleep doctor" put me on Mirapex 0.125 mg one hour before bed about 5 weeks ago. She said the medicine would help to calm my legs. It worked great! I have been sleeping better, and my fibromyalgia pain has decreased.

    The week of Thanksgiving I began having problems. Saturday (11-23) night, I laid in bed, trying to go to sleep and felt mild urges to move my legs and experienced some funny twitches. I went to sleep after 15-20 minutes of this and thought nothing more of it. Sunday (11-24) night, I laid in bed, trying to go to sleep and felt intense urges to move my legs and arms and experienced strong twitches. I went to sleep after 40 minutes or so. In this morning, I told myself that I must not have waited a full hour between my pill and when I went to sleep, so I wasn't too worried. Monday (11-25) night was HELL. The urges to move my extremities were very strong, and I felt a mild burning sensation in my hands and feet. Each time I began to drift off to sleep, I felt as if I was falling and would twich violently awake. I spent two hours awake and in agony. Finally, my sleepiness must've overcome the twitching, and I fell asleep.

    On Tuesday (11-26) morning, I called my doctor. The nurse told me these symptoms were common and to take two Mirapex 0.125mg pills an hour before bed. She said to call back next week if I'm still having problems.

    Tuesday (11-26) night, I lay awake for about a half hour with intense burning but reduced twitches. Needless to say, I didn't sleep very well. The urges to move were very unnerving. The next night was better, though, and each night has been a little easier. I thought I was all good!

    Until last night, Wednesday (12-4), I was doing so much better! Last night, though, I lay awake in agony for two hours experiencing the same symptoms that I had had on Monday (11-25).

    I called the nurse this morning, and she asked if I had had a stressful day yesterday. I told her I really hadn't but that I did start my period. She said that my menstrual cycle is what caused my symptoms last night. She said any kind of stress or hormonal fluctuation will cause an increase in the RLS symptoms. She said things will be tough while I'm on my period. If I'm still having intense symptoms a few days after my period ends, I'm supposed to call back. She said they don't want to increase my dosage or change any medicines while my hormones are fluctuating.

    So here I am with loads of questions...
    Has anyone else experienced this increase of symptoms with stress/ hormonal fluctuation?
    Will this happen every month?
    What can I do to try to relax, etc. before before so that I'm able to sleep?
    Is this normal?
    I've been on the medicine 5 weeks- why am I experiencing these problems now?
    Will the twitches be less tonight, since it's no longer the first day of my period?
    Should I take the pills more than one hour before bed?
    Should I try taking one pill an hour before bed and one pill two hours before bed?
    Does anyone have any tips on what has helped them in this situation?

    Please help! I am DESPERATE and dreading the night (AGAIN)!!


     
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    Old 12-05-2002, 06:12 PM   #2
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    Wow, I can so majorly sympathize with you, I know
    it doesn't fix anything, but from what I've read
    there's lots of people with the same problem.
    I'm 45 yrs old, in my 3rd year of menopause, been having RLS symtoms for about 2 years. I've spent endless nights unable to sleep due to the RLS and on the internet looking for answers to this RLS problem. I haven't tried miraplex, but I've been on several other RLS meds they work for awhile, the doc increases them, then they stop working. All the reseaching Ive done on the net leads me to believe I've also have FM,
    because I have 90% of the symtoms and all of the
    tender points. So where and how does all this help
    you. Persistance, persistance and more persistence
    with the doctors. Even after my doctor has told me
    twice there's nothing more she can do. Out of desperation I end up call her office and insist on something else. This time she gave me ambien until
    I can get back in to the neurologist next week. So
    far I've been able to get a few hours sleep the past
    couple nights but I know the ambien only works for
    a short while. Don't give up, be persistant and
    get their attention let them know how little your sleeping and how much this RLS is affecting your life. Good Luck and keep in touch with the board
    on how your doing. For me sometimes the moral support
    I find on this board is I have to help me thru the sleepness nights. Again, best wishes, Susie

     
    Old 12-06-2002, 10:16 AM   #3
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    I got my fiance up at 2am this morning to do jumping jacks and calf lifts and stretches with me. I hate this. I never had the symptoms before I started this stupid medicine. If this keeps up, I will be just as sleep deprived as I was before when I was waking up 28 times and hour and didn't know it. I think I'm going to go in to the doctor and INSIST that she runs blood tests on me. I have read that the body's levels of iron, magnesium, and calcium have A LOT to do with the intensity of RLS symptoms. No one bothered to check my levels, and I want to know if a specific supplement (of one or more of those minerals) could help my symptoms. To be honest, I'm just waiting for the Mirapex rebound to begin. I'm scared and annoyed. Your advice is helpful, though; I should demand attention and answers. Thanks!! I hope your symptoms are tolerable-- good luck!

    P.S. So I assume from your post that the hormone fluctuation thing applies to you?

     
    Old 12-06-2002, 10:42 AM   #4
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    Hi there. Did you notice on the boards, it says 'Cure for RLS'.
    Just go take iron pills.
    Oh and quit taking that stupid Mirapex, it's NOT good for you. It's numbing you, (putting a bandaid on the real problem).
    Michele
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    Old 12-06-2002, 11:42 AM   #5
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    Yeah, I saw the post; thanks! That's why I want to have the doctor check my blood levels of iron. Otherwise, I wouldn't know how much to take or where to begin. I'm realizing that the Mirapex isn't a solution, but hopefully, it can numb me until I can figure out how to tweak my mineral levels, then I can discontinue it.

     
    Old 12-10-2002, 05:57 PM   #6
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    Hi, I have fibromyelga and rls too. I am also severerly anemic and go in for iron IV twice a month. I have not noticed a difference with the iron iv and my RLS symptoms. The next issue I am taking up with my doctor is the thyroid connection and fibro/RLS. My massage therapist has been cured of RLS/fibro with the help of dr. lowe, he says that most people with these illnesses have thyroid problems. For now I take 15 mg of roxicodone a night for the pain and rls. I have tried the mirapex and anti-seizure drugs to no avail. If it were not for the pain meds (bandaids??- life savers!) I would not function nor hold down a job. Yes, you bet I am addicicted but...I function and lead a normal life now- give me the bandaids until there is a cure! My symptoms are so much worse a week before my period. It hurts so bad! Must be a hormonal thing. I feel for us all!

    [This message has been edited by Judywhit (edited 12-10-2002).]

    [This message has been edited by Judywhit (edited 12-10-2002).]

    [This message has been edited by moderator2 (edited 05-04-2003).]

     
    Old 12-10-2002, 07:05 PM   #7
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    My thyroid tests keep coming back normal... but it's been a year probably since I had one. Do you know what exactly they're looking for with the thyroid tests? Decreased function, overactivity, or something else??
    Thanks for the thoughts!!

    P.S. Yeah, I wish I could ignore the "band-aids" too, but with fibromyalgia, as I'm sure you'd agree, the pain is so much more intense, we need band-aids to live sometimes! Maybe I wouldn't need them if I just had the RLS, but with fibro too... it's a tough call.

     
    Old 05-04-2003, 11:50 AM   #8
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    I do hope that you read this since it has been a while that you posted your message. I have experienced the same exact thing as you. The Mirapex has turned my RLS problem into a living nightmare. Please get back to me on this. I want to know if you overcame the bad effects of the drug.

     
    Old 05-31-2003, 05:47 PM   #9
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    The main purpose of the drug mirapex is to treat the symtoms of parkinsons disease. This includes trembling of the hands and arms. Other symtoms are low blood pressure and loss of smell. Mirapex works by producing dopamine since the brain cells are not working properly and dont produce this chemical. Mirapex has an on and off period. When it starts wearing off, the symptoms reappear. My husband takes this drug three times a day and is doing great but still has rls. Some nites he wakes me his legs shake so violently for just a moment. I know then that the mirapex has wore off and this is an "off period. If you have other symptoms as he has, please see a neurologist. It would be a good idea to rule out this disease. Wishing you the best!
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    Old 05-31-2003, 05:52 PM   #10
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    May I also mention that mirapex has a very serious side effect. You can be driving along and suddenly just fall asleep . Please be careful using this drug. At least do some research on the internet.
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