Restless legs is a disorder characterized by unpleasant, bothersome sensations in the legs. The unpleasant sensations occur while the patient is resting--with the legs muscles relaxed and not moving. The unpleasant sensations result in a spontaneous and irresistible urge to move the legs. The patient may lay in bed and moves his legs or he may get-up and start walking.
Looking at the legs as the patient rests is unrewarding--the legs are quiet (still) and appear normal. However studies performed in specialized-laboratories, as the patient sleeps, demonstrates periodic leg movements through-out the night. Such periodic leg movements occur in 80% of restless-legs patients. Such periodic movements are not seen in patients without restless legs. The periodic leg movements consist of rhythmic extension of the big toe and foot often associated with flexion of the knee and/or hip.
Restless legs may occur in Parkinson disease both in untreated and levodopa treated patients. Rarely, restless legs may be an early symptom of Parkinson disease. Restless legs may occur in patients suffering from anemia, kidney failure, electrolyte imbalances, and disease of the peripheral nerves or spinal cord. Restless legs also occur unassociated with any of the above conditions. The extent of the problem is unknown. However, It's estimated that restless legs, unassociated with other conditions, may occur in up to 1% of the population (2.7 million Americans). However, in less than 0.5% of all patients with restless legs are the symptoms sufficiently bothersome to consult a movement disorder specialist.
Treatments for restless legs, unassociated with other conditions, consist of benzodiazepines including Klonopin, Restoril, and Valium. Benzodiazepines improve the quality of night-time sleep but don't affect the periodic leg movements. Benzodiazepines are depressants and often cause daytime drowsiness. Ekkbom who first described restless legs (Ekkbom's syndrome) used opiates (codeine) to treat the disorder. Codeine reduces the unpleasant sensations associated with restless legs but is otherwise of limited usefulness. Moreover, codeine is addictive.
Long-acting, controlled release levodopa/carbidopa preparations (Sinemet-CR) taken at bed-time reduce restless legs in Parkinson patients and in restless legs patients unassociated with Parkinson or other conditions. Sinemet-CR taken at bed-time is more effective in treating restless legs than immediate release levodopa/carbidopa preparations. However, in time, some restless legs patients (unassociated with Parkinson or other conditions) whose symptoms were successfully treated with Sinemet-CR (taken at bed-time) experience a recurrence of symptoms. Symptoms occur early in the morning--awakening the patient.
In a recent study reported in Neurology, the journal of the American Academy of Neurology, J Montplaisier reported on the efficacy of Mirapex, a dopamine agonist, in treating restless legs unassociated with Parkinson or other conditions. The study included 10 patients. Dopamine agonists (Mirapex, Permax, Requip) offer an alternative to Sinemet-CR in treating restless legs in Parkinson and non-Parkinson patients. Which agonist: Mirapex, Permax, or Requip, to use or whether they're superior to Sinemet-CR must be determined in comparative studies.
Sinemet-CR and dopamine agonists in addition to giving relief to restless leg patients imply that dopamine and dopamine receptors play a pivotal role in causing the disorder. Understanding restless legs may lead to understanding Parkinson disease.
I have been reading where Miraplex is supposed to help with restless leg. Caffeine is supposed to cause problems as far as restless legs too.Another one I heard is room temperature, if its to high or too low it aggraviates restless leg, so you might have to adjust temperature until you find the temperature that works for the restless leg. I like the room really cool it works for me but Doug hates it because hes always cold. So we have two blankets on the bed, hes uses two blankets and I use only the one. There is a drug called Permax that is also used for Parkinsons that some say works real well.
Here is a link to Restless Legs.http://www.rls.org/
I see you aren't on Sinemet. Might be worth discussing with your MDS or neurologist. It might be worth a try at a minimal dosage to at least see if it works for you. You can always pull back and get off of it, if it doesnt work for you. Remember, if you are just starting Sinemet, it may up to 2 weeks to show up as working.
We are on 4 Sinemet CR 25/100 and 3 Comtan (200 mg each), and 2 mg Requip, and .75 mg of Serequel total each day and we thank God for our MDS.
Of course some other PD drugs are supposed to be good for it too--ones people like my husand were already taking or already had tried for the PD itself.
When Mirapex caused some other problems, I backed off to only about two pills a week for awhile and even that small doese helped keep the creepy-crawlies at bay.
Oh, btw, there were times in the course of my husband's long journey with PD when the RLS was the most distressing symptom he had to endure. I understand it feels a whole lot worse to those of us who have heard about it but not experienced it.