Help with Periodic Limb Movement Disorder (PLMD/A)

Posted by johnchristoffer @johnchristoffer, Sep 26, 2025

I have had periodic Limb movement disorder for about 15 to 20 years and have been able to keep it under control with Mirapex.

Recently it has started affecting me during the day if I try to rest much less close my eyes.

I have had RLS prior to the onset of the PLMD which I took Mirapex, gabapentin, and Klonopin Eventually, I just cut back on all but the mirapex and did reasonably well for many years.

I’m 75 years old and have metastatic squamous cell carcinoma.
My other health issues are mostly joint related. Artificial knee, both Achilles tendon reattached three hernia three carpal tunnel surgeries
I’ve also had two heart attacks, a fib, any 11 1/2 cm abdominal aorta aneurysm..
I work almost every day at a grass airfield. I live at which includes maintaining a little over 30 acres including the runway so I stay very active and pretty much have to work until I’m exhausted in order to be able to sleep.

The only thing that interferes with my life at this point is the PLMD/A and most medical professionals that I have spoken to have never even heard of it. So finding help in Northwest Florida is nonexistent.

Anybody that is familiar with this and has a suggestion I am wide open 😎

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 26, 2025

Hello @johnchristoffer and welcome to Connect. I am glad that you found this forum. It sounds like you have maintained an active lifestyle despite many health issues. I found several posts from Connect members who have mentioned this disorder. Here is a link to those posts:
https://connect.mayoclinic.org/search/
I would encourage you to read the posts and see what others are saying about their treatments. You mention that you are in NW Florida. If you are able to drive to Jacksonville, FL, there is a Mayo Clinic location there. Perhaps you can get a consultation there and see if they have any treatment suggestions. Here is a link with information on how to obtain an appointment at the Mayo Clinic: http://mayocl.in/1mtmR63.

I look forward to hearing from you again as you go through the process of meeting others who have this disorder and finding a treatment plan. Will you post again and let me know how you are doing?

daler218 | @daler218 | May 26 10:41pm

Hello. I find some interesting coincidental symptoms that you describe that are associated with what I’ve been experiencing.
I’m 74 years old, I’ve had a knee and hip replacement on the same leg, along with a shoulder replacement. I had an emergency aortic dissection repair surgery 17 years ago.
About two years ago, I began to experience what I thought might be Restless leg syndrome. I was awake almost through the night 5 to 7 nights a week. I consulted my primary care physician, underwent an MRI scan, and also consulted with a neurologist. By that time, I was at the end of my rope wondering if I would ever get another decent night’s sleep.
The neurologist diagnosed periodic limb movement disorder, not RLS.
I have since been prescribed Ropinerole and NIDRA leg band therapy. Both have provided some relief but not a night (or day) goes by that I don’t have symptoms. Therefore, a restful full night’s sleep is nonexistent.
My own Internet research has shown that PLMD was not an accurate diagnosis, since I experience symptoms during the day, and also before I go to sleep at night, when I’m fortunate enough to actually fall asleep.
It’s all been very frustrating, and I hope at some point I’ll be able to find something resembling a cure to these symptoms, so I am glad to have found this site.

Lisa Lucier, Moderator | @lisalucier | May 27 1:06pm

In reply to @daler218 "Hello. I find some interesting coincidental symptoms that you describe that are associated with what I’ve..." + (show)

@daler218 - welcome to Mayo Clinic Connect. You surely get an A for persistence with all this. Sorry to hear a restful night's sleep continues to be nonexistent, and you are also experiencing other symptoms. How frustrating.

Unfortunate that you are still not sure you have the right diagnosis.

What are you experiencing with your legs at night? Are you saying you have the same symptoms in the daytime, too?

daler218 | @daler218 | May 27 4:43pm

Good afternoon, and thanks for asking.

As you know, RLS is typically described as a “creepy-crawly” sensation in the legs that’s only relieved by moving them or taking a walk. As I understand it the nagging sensation is constant.

I don’t have those symptoms. In my case, my foot raises, moving toward my shin with some level of force, and repeats every 15-20 seconds. The movement is totally involuntary, and no amount of voluntary movement or walking offers any kind of relief. Usually the symptoms are in one leg (in my case usually the right) but at other times it’s either the left leg or both.

The neurologist I met with diagnosed PLMD, but my research indicates that only occurs while one is asleep. In my case symptoms occur while awake; oftentimes in the middle of the day, but nearly always shortly after I climb into bed.

Prior to being prescribed Ropinerole and carbidopa/levodopa I spent countless sleepless nights. The medications have helped, but there are nights when they’re ineffective. I also use NIDRA therapy bands which, I believe, are usually used to treat RLS. NIDRA has also been of some help.

I hope this answers your questions, and again thank you for your interest.