 |
 |
Dear Beale: I haven't been putting messages on this list lately nor am I reading the PD digest - I simply cannot download the zipped text that have appeared here of late. I am getting E-mail from Restless Leg Syndrome sufferers however and I am concerned about your horrible suffering - my own RLS has gotten so bad and painful that sometimes I wonder if I can survive the body assaults of both Parkinsons and RLS for long. Frankly the RLS at this point is much worse than PD. In my search for RLS help I discovered we have a support system with a newsletter. You can get information by writing to RLS Foundation-PO Box 314, 514 Daniels St., Raleigh NC 27605. The Newsletter is called "Night Walkers." I have tried every trick and medication suggested by anyone and have come down with the following routine: l. Sinemet CR 25/100 four times a day with the last dose at bedtime (ll pm more or less) 2. One half a regular (yellow-Sinemet 25/100) at bedtime to cover the usual and distressing lag time of the controlled release Sinemet. 3. Oxycodone 5 or l0 mg at same time as above. Usually I am able to get to sleep with this if I don't drink milk or eat high protein food for two hours before or after taking these meds. I tried taking just the oxycodone 15 mg at bedtime and that works well but later on the next morning I felt drugged. oxycodone alone does not seem bothered by ingested protein. In my opinion oxycodone is the secret ingredient. Sinemet alone is not altogether satisfactory for the awful aching pains, spasms and jerks of RLS. I too would love to find a non medical treatment for RLS. It scares me to know I will probably become refractory to the drugs I am taking now. Note: Do not confuse night cramps (charley horse) with RLS. These cramps go away with manual reduction. RLS causes an irresistible need move the legs only to recur as soon as one tries to relax. As well, RLS is not akathisia which is an inner sense of restlessness accompanied by an inability to sit still usually caused by antipsychotic drugs in which treatment is to stop taking that drug. Some doctors attribute RLS symptoms to peripheral vascular disease, but vascular rest pain occurs only with exertional pain. You don't have to do a thing to bring on RLS. It is always there waiting to inflict unbearable sensations. RLS is more likely a malfunction of peripheral nerves called neuropathy. In many cases RLS is inherited. A dreadful disease I hope my children won't get. If you want to send messages directly to me ---- <[log in to unmask]> and send copy to PD listserv so other sufferers will perhaps benefit. Regards, Barbara Yacos, R.N.