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Old 11-27-2002, 12:15 PM   #1
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Unhappy Can't Take Another Night Like This- Please Help With This Mirapex/RLS Question!

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.

All was well until a few nights ago.

Saturday 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 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 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 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 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.

I tried to call my doctor, but the office is closed until next week for the holiday.

I need some HELP! Is this normal? I've been on the medicine 5 weeks- why am I experiencing these problems now? Will the twitches be less tonight? Should I take the pills more than one hour before bed? Or one an hour before bed and one two hours before bed? I'm traveling for the holiday, so my sleep will be poor anyway... should I not take the medicine? Does anyone have any tips on what has helped them in this situation?

Please help! I am DESPERATE and dreading the night!!


 
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Old 11-29-2002, 04:57 PM   #2
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I'm sorry I don't know. I also have Fibromyalgia and RLS. I went through a very bad situation with Klonopin several years ago, and decided that I couldn't deal with the side affects of the drugs. It took me 3 months to wean off a drug I was on for 4 weeks.
so, you may try going to a pharmacist. I have usually found them to be more knowledgeable about the medications than some of the Doctors. They may be able to tell you if you should increase, or decrease.
I have used other methods to control the RLS. I have had a lot of massage therapy on them. I also found that exercising early in the day, helped the legs to relax more at night. A hot bath also helped. Increasing my magnesium and calcium levels considerably also helped. i'm sorry I don't have the answer you need,but hopefully something will help you. Please take a look at your age and ask yourself, "do I want to be on this medication the rest of my life? If not, start to investigate alternative methods of taking care of the problem. There are more answers out there than just the Rheumatologists. You might be helped greatly by a Naturopathic or Homeopathic physician.
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Old 09-17-2007, 12:42 PM   #3
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Re: Can't Take Another Night Like This- Please Help With This Mirapex/RLS Question!

Hi, I was dx'd with PLM (periodic limb movement disorder) after a sleep study. I was put on neurontin which I thought was working just fine, except for a little double vision. I stayed on the drug for 7 months and fell into a deep depression which is so unlike me. I discovered that the drug I was on could cause depression and suicide ideation. I immediately stopped taking the drug and was back to my old self in no time.

I started going to a holisitc MD who put me on lipoic acid and magnesium, both OTC supplements, and I am doing fine.

BTW, my sister had a very similar experience to mirapex to yours. She went from moderate RLS to severe RLS. She too has gone natural.

Good luck, and don't let up on your doctor. Let us know what happens.

 
Old 09-17-2007, 07:52 PM   #4
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Re: Can't Take Another Night Like This- Please Help With This Mirapex/RLS Question!

Quote:
Originally Posted by SusanMiles View Post
Hi, I was dx'd with PLM (periodic limb movement disorder) after a sleep study. I was put on neurontin which I thought was working just fine, except for a little double vision. I stayed on the drug for 7 months and fell into a deep depression which is so unlike me. I discovered that the drug I was on could cause depression and suicide ideation. I immediately stopped taking the drug and was back to my old self in no time.

I started going to a holisitc MD who put me on lipoic acid and magnesium, both OTC supplements, and I am doing fine.....
Susan, fyi, the original post was from the year 2002 so the mod may start a new thread...but in the meantime, I would just like to say I had a similar expereince to yours, with plms. I was diagnosed with almost 400 movements per night and the mirapex didn't do a thing...neither did the iron tablets. My movements stopped when I stopped taking a water pill. I have since learned that water pills (and other things) can deplete the body's magnesium levels. From what I've read, I believe this happened to me.

Am glad you caught on to the side effects of neurontin...I've experienced similar side effects with a blood pressure med (after only a couple of weeks of use). We're the lucky ones. I suspect their are many others who don't figure out the correlation--doctor's included.

Bethsheba

 
Old 10-06-2007, 07:58 PM   #5
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Re: Can't Take Another Night Like This- Please Help With This Mirapex/RLS Question!

Please have your thyroid checked people!!!! See my thread under carpal tunnel syndrome. I was diagnosed with Fibro in 1999, then came the rest of the illnesses, carpal tunnel syndrome, tendonitis in my elbow, restless leg syndrome, sleep apnea, HBP, adreanal fatigue, irritable bowel syndrome.....I am a walking catastrophe. After having half of my thyroid taken out in August...(this was done due to my insistance that my doctor do an ultrasound as I had trouble swallowing.....for months) I had two nodules, one calcified. Anyway....I finally got disgusted with my family MD as he said three weeks post op that I was just a normal high on my TSH test and he would retest in six weeks. I have been one sick puppy and the Endocronologist dx hypothyroid along with hypothyroid myopathy of my muscles...this is like a muscle wasting disease. Anyway.....the thyroid not functioning can cause a lot of problems...and I mean a lot of problems. Just check out the Thyroid disorder board. Also...most general MDs don't know how to look at the big picture and have tunnel vision when it comes to thyroid tests. Just be sure to have your thyroid checked as it does go hand in hand with sleep disorders, carpal tunnel syndrome, tendonitis and fibromyalgia.

 
Old 10-18-2007, 04:20 PM   #6
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Unhappy Re: Can't Take Another Night Like This- Please Help With This Mirapex/RLS Question!

My boyfriend has had non stop body, arm and leg jerking the past two months. It use to just happen when he fell asleep but now it happens every hour of the night, continually. The movements are sharp, he has actually hit me in the face with these movements while sleeping. Is this similiar to what you have experienced? Please help, it is ruining my sleep and effecting our relationship. He has signed up for a sleep clinic, but any feedback would really be appreciated. He does not realize he is doing it, but it sure effects me.

 
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