I have only started Madopar medication three weeks ago at a low dosage. My PD nurse informed me that I wouldn’t as yet be getting any benefits as I hadn’t reached therapeutic levels. I phoned her because I am having terrible RLS at night and foot tightening, spasms during the daytime. She also insisted that I take my meds at exactly the same time each day to maintain steady dopamine levels and that I would shortly see an improvement. Problem is my patience is wearing thin. I am wondering how I can keep going as I am terribly exhausted after months of broken sleep. At times I just wish someone would knock me out. Can anyone out there provide any words of comfort to ease my plight. It is getting to the stage where I dread night coming because I know what to expect. Thanks again for your patience and help in advance.
Hi I have suffered RSL on and off and I know how it impacts on your sleep and your state of mind.
I have found that taking a combined iron and vitamin c tablets helps a great deal.
I take Half Siminet CR before bed, and if I wake in the early hours I take another one. After half an hour I am able to drop off.
I’m glad to see that @juju has provided you with words of comfort and I’m truly sorry that you’ve been restless leg syndrome. Restless legs syndrome is a common problem for people with Parkinson’s, but it can also be a separate condition that is unrelated to Parkinson’s. It’s also common for people with Parkinson’s to take their medication and specific times throughout the day to make them more effective so it’s understandable why your PD nurse would advise you to do this. However, I can completely understand why your patience is running thin.
I would encourage you to make an appointment with your GP, they can refer you to a specialist if necessary. Before your appointment, you may find it useful to keep a diary of your symptoms , including when and how they affect you, there’s more information on this here: https://www.parkinsons.org.uk/information-and-support/monitoring-your-parkinsons).
There are also a few ways that you can manage RSL including lifestyle and diet changes - we have a lot of useful information on the Parkinson’s UK website here: https://www.parkinsons.org.uk/information-and-support/restless-legs
I’m sure you’ll receive more words of encouragement from other members of the community and please remember you can always give our helpline a call for more support on this. Our advisers would love to offer you the help you need so do give us a call on 0808 800 0303.
Please take care.
Hi Boomerang 83
I really feel for you. I have had Parkinsons for 18 years, and I’ve had Dystonia in my feet for 8 years, ask your GP if you have i t. I have Botox injections every 3 month in my legs for this problem. But I find heat helps, I have slippers with rice in which I heat up in the microwave or use a hot water bottle, I hope this helps. Take care zo x😊
highly recommend you try Valerian root at night for RLS and to help you sleep