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Restless Leg Like Jerks At Night. What Is That? PD Or Something Different?

A MyParkinsonsTeam Member asked a question 💭
Norwalk, OH

Occasionally when I got to bed at night, after taking night meds, I simply cannot rest. I try different positions to sleep, legs up on pillows, side of flat back, nothing helps. I JERK involuntarily. I can feel my muscles twinge then it appears to run down a leg or into my back and I Jerk. It is an awful feeling. I know I am going to jerk as soon as the muscle twinge feeling runs its course. It all happens in a second. WHAT IS THAT? The only help is to get up, sit in my chair with… read more

March 1, 2018
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A MyParkinsonsTeam Member

In answer to your question about RLS, I have some insight and, possibly, help for you.
About 4-5 years (diagnosed) into my PD, I developed RLS. Up until that time, I didn't have it. I went in for my check up and spoke to my MDS about it. She said that she expected it to manifest much earlier.! 😢.
Apparently, RLS, for those who have PD, is caused by the levadopa/carbedopa. They go hand in hand, somehow. Just like the dyskinesias that plague many of us, they are caused as a very annoying and exhausting side effects from too much levadopa/carbedopa in the body.
Seems the key is to reduce the l/c amounts in the body without causing adverse effects on the body. My adverse effects are exhaustion and severe dystonia! When my dystonia goes unchecked, I writhe in pain like someone withdrawing from heroin!😢. So, I walk a narrow sword, trying to find a balance always. I saw my doctor this afternoon and we were talking about what is left for me to do to maintain some sort of balance in managing this awful disease. I read on Facebook a little trick to help ease some of the RLS. I shared this with her..... Place a small bar of soap, the kind you get when staying in a hotel, place it under the bottom sheet at the foot of the bed!
I find it calming. I just run my toes over the area and I think it's distracting enough to get my mind off of my legs.
I also drink a warm cup of milk with nutmeg on top. It helps me relax. Make sure that you take calcium citrate and magnesium citrate to assist in your muscles relaxing.
The one thing that I walked away from the appointment today is this....🤔MOST LIKELY, our treatment programs will involve a combination of things that WORK for you, but they have to be in combination. Too much of one thing and not enough of another will create that imbalance.....And you will fall off your sword. And remember, PD is a progressive disease, so you have to be very alert to what your body is doing as it moves along . There's always something that you will have to adjust to and accept. It's a BITCH! Pardon my "french"!
Hope this helps you!!😊☺️

March 1, 2018
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member - even as a child, I used to have a "startle" jerk as I was dropping off to sleep. It is quite ordinary to actually observe this in babies sometimes. I have found that it is a sign that I am sleepy. If it happens while I am driving, I reach for the coffee or the trail mix, to be eaten one tiny piece at a time to keep me awake. Right now, I have been up since 5am, and am starting to do it as I sit at my computer - time to go back to bed - but there is so much I want to do before John & his 25 year old son Jack get up to start our day. Sometimes that startle reflex helps me not to break my nose diving into the keyboard or tipping off the computer chair when I manage to fall asleep at the computer! I am delighted that you are interested in herbs! Have you tried chewing on a fresh melissa petal straight from your garden? I used to have terrible acid reflux, with green bile pouring into my mouth. When I chew on sagebrush (not Mediterranean sage, like we put in turkey stuffing, but the fragrant, persistent pasture weed that is so prevalent in the Rocky Mountain west), it goes away instantly. No problems with AR any more!

March 2, 2018
A MyParkinsonsTeam Member

I did some research that may help both of us. It could be Restless Leg Syndrome. There is a foundation totally devoted to RLS and its website is rls.org where you can find out all about it and it has suggestions like those listed below. You may also find it interesting that it can also be related to an iron deficiency. The primary treatment appears to be a number of different medications.

Gently massage the area
Gently stretch the muscles in your legs
Apply a hot or cold pack to the area
Take a warm bath in the evening
Avoid alcohol, caffeine and smoking
Avoid foods that seem to trigger restless legs
Practice relaxation exercises before bedtime
Participate in regular exercise during the daytime

It could also be PLMD, Periodic Leg Movement Disorder, where your legs jerk when you are trying to sleep. I am pretty sure this is what I have. From your description this could be your problem, too. According to the RLS Foundation, it is possible to have both. I'd try the suggestions above as they may give you some relief anyway.

March 1, 2018
A MyParkinsonsTeam Member

Hi Sally it was the first night of taking it & I think it needs like other meds. about 5 days to start working, so no change yet, but I had a bad dream last night but don't know what about so that is a change from remembering all day.

March 8, 2018
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member Oh my yes. Seems a lifetime that I have been interested in earth medicine. My adult life anyway. I even use to have a book by Eule Gibbons, not sure of the title but it was about eating from the wild. From hickory nuts to Heart of Cattail. Continuing in my gardening, most of our decorative perennials are "herbs". Herbs just means a useful plant, but a lot of herbs are medicinal or edible. NOT ALL so one has to be knowledgeable before feasting on the flower garden. lol I do grow Lemon Balm. Once you have it, you can't not grow it. It self seeds everywhere and it perennial. Out of sheer exhaustion in my busy gardening days, it was very exhausting to dig daylily orders, clean them and get them boxed up for shipping. At the end of a hot sweaty day, before I could move on to shower and then bed, I would make a cup of Lemon Balm tea from a fresh sprig. It is a balm. So good. Where I live there is a story in history that settlers came here from Connecticut "firelands" when they were burned out. They brought a "weed" with them as food. It is called garlic mustard. It still lives here as a garlicy smelling green plant we see every spring. It is so set on spreading itself, if you drop it where you pull it, it will continue to set seeds and grow from there. Even in Cleveland gardens, every spring they have a crew of volunteers that go though the woods pulling Garlic Mustard. It may not be medicinal, but it was a green food staple of the pioneers. we do the same here on our property. Good thing it is easy to pull. And here it is. http://www.weedalogue.com/garlicmustard/

March 4, 2018

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