I’ve had 2 sleep studies and both showed severe Periodic Limb Movement Disorder. This is not Restless Leg Syndrome so I’m not aware of my leg twitches, as they only happen during sleep and do not wake me.
I fall asleep ok, sleep all night and wake up totally unrefreshed. I don’t have any of the more common sleep disorders.
Sleep Doctors don’t seem to want to help us much or engage in discussion on the subject of PLMD.
Recently trialled a CPAP for 1 month and found no benefit as my Apnea is only mild anyway.
Nothing affects the quality of my sleep. It is the same no matter how long I sleep or where I sleep or what sleep hygiene techniques I try over recent years.
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Hi AussieIan,
Thanks for sharing your experience,it really resonates. PLMD is so often misunderstood or overlooked especially when it does not cause full awakenings. It is frustrating when sleep doctors seem dismissive, especially when you are clearly doing everything right sleep studies, CPAP trial, sleep hygiene but still waking up unrefreshed.
One thing you might consider asking your doctor about is a trial of dopaminergic medication like pramipexole or ropinirole which is sometimes used off-label for PLMD. It can help reduce the limb movements during sleep and for some, significantly improve the feeling of being rested. That said, it needs to be carefully managed due to the risk of augmentation.
Also, have you had your ferritin levels checked recently? Low iron even within the low-normal range can worsen PLMD. Some people have seen improvement just from iron supplementation.
Lastly, if you are not already keeping a sleep log or using a wearable sleep tracker that might help you better communicate patterns to a provider who takes this more seriously, perhaps even a neurologist or sleep specialist with experience in movement disorders.
You are definitely not alone in this and it is clear you are being proactive. I really hope you find a solution that brings some proper restorative sleep soon.
Take care and keep us posted,
Best regards by Moe
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Hi Moe,
Thanks for your advice.
The ferritin is something I will check as I was about to try iron supplements but wanted to be sure. However I’ve been like this for more than a decade and blood tests in the past have been normal.
I think I’m at the stage of needing dopaminergic drugs. Sleep trackers af various types all indicate average deep sleep of around 10%. I’ve used trackers for 2-3 yrs but find nothing I try ever shifts monthly average much and I NEVER feel any different when starting my day. What is a good sleep?
If I find out I will let you know.
I get plenty of light sleep so I’m not sleepy when I wake up, but I’m low in energy throughout the day and I fear the neurological impacts this poor deep sleep is having.
I’ve seen neurosurgeon and endocrinologist but not neurologist.
Find sleep specialists lacking in South Australia so far. Still trying…
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Hi again,
Thanks for the update. It really does sound like you have done a lot already and you are absolutely right to be concerned about the long term effects of poor deep sleep.
Since your trackers show persistently low deep sleep despite good sleep habits and ferritin has been normal in the past, a trial of dopaminergic medication under medical supervision seems like a reasonable next step especially given how long this has been affecting your energy and quality of life.
I do also strongly encourage seeing a neurologist next especially one familiar with movement disorders in sleep. They tend to have more experience with PLMD and may offer better guidance than general sleep clinics.
Wishing you real progress and better rest ahead. Please do share if you find something that works,it helps us all.
Take care,
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Just wanted to say how heartening it is to see such thoughtful, supportive conversation here — thank you both for sharing so openly. It’s clear how much effort and care you’re putting into understanding and managing PLMD, and it’s truly inspiring.
Navigating sleep disorders like this can be such a lonely and frustrating process, so seeing people connect, offer helpful ideas, and genuinely root for each other is exactly what makes this community so special. Wishing you both continued progress — and please keep the updates coming. It really does help others walking a similar path. 
Hi Glei and Moe,
Thanks again for your valuable support. The neurologist is definitely something I will add into my plans for further examination. I will keep in touch.
Is there any online community for PLMD sufferers ??
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Hi, You’re very welcome — I’m so glad the information was helpful! Consulting with a neurologist sounds like a great next step, and I truly hope it brings you more clarity and support.
As for connecting with others who are also navigating PLMD, I was able to find the Mayo Clinic Connect forum might be a great resource. It’s a moderated, supportive online community where people share their experiences and find encouragement from others with similar challenges. Here’s the direct link: https://connect.mayoclinic.org/discussion/periodic-limb-movement-disorder/
Wishing you continued strength and better rest ahead — and please don’t hesitate to keep in touch if we can help further
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Thanks Glei,
I will definitely stay in touch as I further my progress.
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