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420368 tn?1209071706

Help, where's the peaceful sleep?

RLS runs in my family, I have severe RLS that not only effects my legs, but
also my hands, arms,.feet, neck and stomach. It is the insane need to move,
that only gets worse, the more tired I am. I take mirapex 3x day. It seems to
work if I am carefull to not pass my sleepy stage. I also take clonazapam to help
me go to sleep.
When it strikes, I have to turn on lights and act like I'm not going to sleep. Sometimes
a burning hot bath will force me to relax and I can then maybe get to sleep. I've fallen asleep
standing up in corners many times in desperation for sleep. Walked the house at night,
not wanting to wake anyone up. Sometimes I wake up with RLS in the night.
I even get it during the day. The day after a bad night is ruined, I can't funtion and have no
energy.
My oldest brother has parkinson's and of course had RLS. He (and my mom)
take carbadopa. I have crohn's diease and have had other medical problems as
well as depression.My mother gets it so bad she's about to go crazy, it's maddening
and discomforting cause she needs her sleep desperately. Is it possible I or we will get
parkinson's, what could we do to alleviate the symptoms of RLS...
4 Responses
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Avatar universal
Hi, sorry to hear about your suffering, When were you diagnosed and has the drugs helping you out. Positive family history is a risk factor. You need to have re-evaluation with your  attending physician and also seek advise from a sleep therapist. Take care.
Helpful - 0
Avatar universal
hope you are doing better. How is your health and sleep these days. Have you got evaluated completely. Your thoughs would be of great help to some of viewers of this section so keep updating. Take care.
Helpful - 0
420368 tn?1209071706
Hey there,

It's 11:30 pm, and I was asleep for an hour and woke up with RLS. I tossed around for 20 minutes and finally couln't take it any more. So I'm up with all my lights on, and took another sleeping pill. It will kick in soon, I hope. I have been having a rough last few days, feeling extremely tired, too tired to type. I have crohn's and it is making me feel real sore and restless as well. I haven't yet seen a doctor for an update evaluation yet...
still taking mirapex 3x a day, at first it seemed to work but now I'm not so sure. I think I would still be sleeping if that was the case. My legs and arms get so sore from not having enough rest and I'm even getting cramps from it. My mother who has RLS, takes carbadopa, but my doctor won't give that to me cause it dosen't go well with my crohn's.
My sister is resting very well with mirapex, she can now sit through meetings without going crazy and can concentrate better. At this point, I'm going to an IBD Center (starting next month) and will be preoccupied with that to an extent. I do not know of a doctor or sleep clinic that handles RLS yet but I will find out now that I know about MedHelp. So that will be my next step, getting info for that. I find that I do alot of twitching before I fall to sleep and cannot find a comfortable position so I toss around alot too. I kick in my sleep and cannot lay in one postion for long. When I finally wake up exhausted in the morning, my sheets are in a total tangled mess from the night before. I have to take frequent naps during the day to make up for the restless sleep during the night before. I have been so tired theses last few days, I walk alittle bit and have to stop and recuperate before I can move again. I hear alot of people complaining about RLS but they don't seem to understand what RLS really is. There are no charley horses, not really pain, and it strikes the torso as well as the hands and arms and even the neck area. I turn on lights to try and fool my body into thinking it's still light out, so I can start the sleep process over again and get sleepy the way a normal person would.
I admit I stayed up late the other night answering messages, stayed up too late, and haven't been able to get back on schedule again. It really messed me up.
That's all I got for now, I will keep you informed when I find a sleep therapist to go to.
Take care of yourself and thanks for caring...
Helpful - 0
Avatar universal
Hi, how are you doing. Restless Legs Syndrome (RLS) is a neurological disorder that is by the following four major features: 1) Compulsory desire to move the limbs usually associated with a sensation of burning or tingling; 2) Motor movement to relieve the discomfort such as floor pacing, leg rubbing, or streching the limb; 3) Partial or temporary relief of symptoms with activity and 4) Worsening of the symptoms at rest and in the evening or night. Patients may also experience sleep disturbances and periodic leg movements either during sleep or while awake. Often affects members of the same family, can be associated with other underlying medical conditions including rheumatoid arthritis, iron deficiency, pregnancy, hypothyroidism, peripheral neuropathy and Parkinson's disease. Treatment consists of identifying and treating the underlying condition. A variety of different classes of drugs. Since patients also experience significant sleep difference causing them to feel tired and sluggish during the day, sleep hygiene education is an important aspect. A variety of lifestyle modifications such as avoidance of alcohol, caffeine, and medications may help controlling symptoms. You need to relax and try few sessions of massage therapy also. Continue medications till seen by a neurologist. Take care.
Helpful - 0
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