I was diagnosed with severe PLMD in 2018 (although, my symptoms have been present for as long as I can remember.)
I was diagnosed by a neurological sleep specialist and have followed EVERY recommendation. I take Gabapentin and iron supplements (my iron levels are not low, but was told elevated levels could help). I follow his sleep hygiene schedule, rarely (I mean rarely) drink coffee or consume caffeine and have almost completely eliminated chocolate (I admit that I have a sweet tooth, but am rather disciplined!) Also, I take magnesium before bed because my GP thought it would help.
However, I don't feel any more rested.
The fatigue and exhaustion is unbearable. The headaches occur almost daily and at times, I get lightheaded. When I push myself, eventually my heart starts to race (even while sitting) and I find it hard to get enough oxygen. I get very warm and ugh...sweaty...when I'm lightly active (even walking less than five minutes) too. And, any exercise, no matter how little, exhausts me further. At times, it seems that I need two days to recover. Is anyone experiencing these symptoms?
Anytime I meet with the sleep specialist for a follow-up, he tells me that my symptoms are caused by my shift work. But, I had these same symptoms when I had regular nine to five (cue Dolly song) hours.
I can't help but think that these symptoms are an indication of another problem (or maybe we're not treating the PLMD correctly?) However, my blood tests always come back normal and although I was diagnosed with a bundle branch block, have been told that would not cause my symptoms.
I need a bit of guidance. This has impacted every aspect of my life. I stopped exercising because I can't function afterwards, I've had to pause classes and volunteer work, I've missed team sport games, cancelled social events and worst of all, have missed so much work that it's impacting my reputation (not to mention any future employment opportunities).
I'm grasping at straws to find a solution. However, first I need to know the actual problem.
My neurologist thinks so. Eeg fi e, mri good, no plaques. Says unlikely seizures. Sleep study next but as people above said, my jerks don't happen in sleep. Anytime I am fatigued, lo g drives in passenger seat, had whole body myoclonic jerks after my first cardioversion. Noted by ER DOC. Started with legs, then arms hen involuntary situps. I've had them since about age 14, am 63 now and they seem to be getting worse. So very tired of being told it's RLS...IT'S NOT. Symptoms don't match. I believe it has somethi.g to do with my body's electrical system. I also have AFIB, familial. 2 ablations, now just medication. Luckily not in permanent AFIByet.
Hi
I’m a newbie.
I have PLMD after 2 sleep studies ten years apart both showed it.
I’m interested in how many people suffer it and do they know their PLMD score from their sleep study?
I’m going through trials to try and improve my sleep quality with a sleep specialist.
I sleep no problem but the quality is poor as my Deep sleep is not good and nothing yet seems to improve it. So with PLMD, I don’t feel sleepy during the day, rather lethargic and low in energy. I get heaps of light sleep but wake up feeling lousy every day no matter how long I sleep or where I sleep or what activity I’ve done during the day or what supplements I’ve tried or what of the many sleep hygiene techniques I’ve tried.
I suspect there are millions of people like me who don’t know what a good sleep is because PLMD is not detected until you have a proper sleep study (Polysomnogram).
I had hoped Mayo Clinic would be a guiding light on PLMD.
Hi
I’m a newbie.
I have PLMD after 2 sleep studies ten years apart both showed it.
I’m interested in how many people suffer it and do they know their PLMD score from their sleep study?
I’m going through trials to try and improve my sleep quality with a sleep specialist.
I sleep no problem but the quality is poor as my Deep sleep is not good and nothing yet seems to improve it. So with PLMD, I don’t feel sleepy during the day, rather lethargic and low in energy. I get heaps of light sleep but wake up feeling lousy every day no matter how long I sleep or where I sleep or what activity I’ve done during the day or what supplements I’ve tried or what of the many sleep hygiene techniques I’ve tried.
I suspect there are millions of people like me who don’t know what a good sleep is because PLMD is not detected until you have a proper sleep study (Polysomnogram).
I had hoped Mayo Clinic would be a guiding light on PLMD.
I too have suffered from PLMD for over 35 years. Do you live close to a Mayo Clinic? If you are able to schedule an appointment with a sleep specialist at Mayo, they would complete a nerve test, and other testing to determine if it is truly PLMD.
I was diagnosed with RLS back then, when I knew after reading and researching, I had PLMD. It was the Mayo Sleep Specialist who diagnosed me with PLMD after listening to me, truly listening to me. I am taking a very small dose of buprenorphine that curbed the leg jerks at night, and at naps (when taken)
I had two sleep studies, one in 2015 and the other in 2023: both were inconsistent with the results. As we age the PLMD becomes worse, and if needed, I will take another sleep study.
Good luck with your journey at this terrible disease.
I was diagnosed with PLMD over 20 years ago. Don't remember scores (3 separate sleep studies), but they were high. I tried about 17 different drugs , but none were effective, except Clonazepam. I take a small dose (2mg) just before bed, & it works fine. Docs are reluctant to prescribe as it is highly addictive & may cause organ damage. I get checked by doc's every year & have had no such problems. Don't mind being addicted, because I can sleep--worth it! Hope this helps, & saves you the pain of going through a lot of the unnecessary side effects I went through. Good Luck!!
I too have suffered from PLMD for over 35 years. Do you live close to a Mayo Clinic? If you are able to schedule an appointment with a sleep specialist at Mayo, they would complete a nerve test, and other testing to determine if it is truly PLMD.
I was diagnosed with RLS back then, when I knew after reading and researching, I had PLMD. It was the Mayo Sleep Specialist who diagnosed me with PLMD after listening to me, truly listening to me. I am taking a very small dose of buprenorphine that curbed the leg jerks at night, and at naps (when taken)
I had two sleep studies, one in 2015 and the other in 2023: both were inconsistent with the results. As we age the PLMD becomes worse, and if needed, I will take another sleep study.
Good luck with your journey at this terrible disease.
Hi Vikkitennis,
Thanks for your quick reply.
I’m in Australia and currently seeing the Sleep clinic at the Flinders University here in South Australia. It’s slow going and a bit frustrating I’ll admit but I’m retired now and am steadily expanding my knowledge more on line and by getting different medical checks and seeing different specialists. I’ve known something wasn’t right about my sleep for a long time, but I had no obvious signs and no RLS. I just knew I shouldn’t feel so drained every day.
Also I never dream anymore like when I was younger ( when I would wake near a REM phase and recall the dream). My deep sleep is impacted and that’s what I’m hoping to improve once I start some meds under guidance of my sleep doctor. I’m yet to be impressed by either of the sleep doctors I’ve seen though.
Thanks again
I was diagnosed with PLMD over 20 years ago. Don't remember scores (3 separate sleep studies), but they were high. I tried about 17 different drugs , but none were effective, except Clonazepam. I take a small dose (2mg) just before bed, & it works fine. Docs are reluctant to prescribe as it is highly addictive & may cause organ damage. I get checked by doc's every year & have had no such problems. Don't mind being addicted, because I can sleep--worth it! Hope this helps, & saves you the pain of going through a lot of the unnecessary side effects I went through. Good Luck!!
Hi aureliorod,
Thanks for sharing your pain with me.
And 17 medications, wow that’s scary in itself. Was that through a number of different doctors? It’s great that Clonazepam works for you though and yeah I agree that’s a good addiction to have to have. How much better did your sleep feel and how long did it take to start working?
My younger sister started taking it last year for anxiety and it’s improved her sleep ( she just had trouble falling asleep). The interesting extra was that it cured her Raynauds syndrome also. I have it also so maybe I’ll get the double benefit also.
Sweet dreams
Hi aureliorod,
Thanks for sharing your pain with me.
And 17 medications, wow that’s scary in itself. Was that through a number of different doctors? It’s great that Clonazepam works for you though and yeah I agree that’s a good addiction to have to have. How much better did your sleep feel and how long did it take to start working?
My younger sister started taking it last year for anxiety and it’s improved her sleep ( she just had trouble falling asleep). The interesting extra was that it cured her Raynauds syndrome also. I have it also so maybe I’ll get the double benefit also.
Sweet dreams
With Clonazepam, I just notice that when I decrease , or stop taking it, I get NO sleep, then end up dozing, all day, while I watch TV or read. I don't remember how many docs were involved, but they were good & I respected them.
Clonazepam started working as soon as I started taking it. I take it as I'm going to bed. Sometimes 20 minutes before, if I'm not really tired, but don't want to stay up late.
Hi Vikkitennis,
Thanks for your quick reply.
I’m in Australia and currently seeing the Sleep clinic at the Flinders University here in South Australia. It’s slow going and a bit frustrating I’ll admit but I’m retired now and am steadily expanding my knowledge more on line and by getting different medical checks and seeing different specialists. I’ve known something wasn’t right about my sleep for a long time, but I had no obvious signs and no RLS. I just knew I shouldn’t feel so drained every day.
Also I never dream anymore like when I was younger ( when I would wake near a REM phase and recall the dream). My deep sleep is impacted and that’s what I’m hoping to improve once I start some meds under guidance of my sleep doctor. I’m yet to be impressed by either of the sleep doctors I’ve seen though.
Thanks again
I wish you the best to find this journey and find relief.
The tablet buprenorphine has been the best prescribed to me, yet the dry mouth during the night is a problem. I use a dry mouth solution, and rinse during the night.
I continue to wake during the night, but always return to sleep within minutes.
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I was diagnosed with severe PLMD in 2018 (although, my symptoms have been present for as long as I can remember.)
I was diagnosed by a neurological sleep specialist and have followed EVERY recommendation. I take Gabapentin and iron supplements (my iron levels are not low, but was told elevated levels could help). I follow his sleep hygiene schedule, rarely (I mean rarely) drink coffee or consume caffeine and have almost completely eliminated chocolate (I admit that I have a sweet tooth, but am rather disciplined!) Also, I take magnesium before bed because my GP thought it would help.
However, I don't feel any more rested.
The fatigue and exhaustion is unbearable. The headaches occur almost daily and at times, I get lightheaded. When I push myself, eventually my heart starts to race (even while sitting) and I find it hard to get enough oxygen. I get very warm and ugh...sweaty...when I'm lightly active (even walking less than five minutes) too. And, any exercise, no matter how little, exhausts me further. At times, it seems that I need two days to recover. Is anyone experiencing these symptoms?
Anytime I meet with the sleep specialist for a follow-up, he tells me that my symptoms are caused by my shift work. But, I had these same symptoms when I had regular nine to five (cue Dolly song) hours.
I can't help but think that these symptoms are an indication of another problem (or maybe we're not treating the PLMD correctly?) However, my blood tests always come back normal and although I was diagnosed with a bundle branch block, have been told that would not cause my symptoms.
I need a bit of guidance. This has impacted every aspect of my life. I stopped exercising because I can't function afterwards, I've had to pause classes and volunteer work, I've missed team sport games, cancelled social events and worst of all, have missed so much work that it's impacting my reputation (not to mention any future employment opportunities).
I'm grasping at straws to find a solution. However, first I need to know the actual problem.
Please help!
My neurologist thinks so. Eeg fi e, mri good, no plaques. Says unlikely seizures. Sleep study next but as people above said, my jerks don't happen in sleep. Anytime I am fatigued, lo g drives in passenger seat, had whole body myoclonic jerks after my first cardioversion. Noted by ER DOC. Started with legs, then arms hen involuntary situps. I've had them since about age 14, am 63 now and they seem to be getting worse. So very tired of being told it's RLS...IT'S NOT. Symptoms don't match. I believe it has somethi.g to do with my body's electrical system. I also have AFIB, familial. 2 ablations, now just medication. Luckily not in permanent AFIByet.
Hi
I’m a newbie.
I have PLMD after 2 sleep studies ten years apart both showed it.
I’m interested in how many people suffer it and do they know their PLMD score from their sleep study?
I’m going through trials to try and improve my sleep quality with a sleep specialist.
I sleep no problem but the quality is poor as my Deep sleep is not good and nothing yet seems to improve it. So with PLMD, I don’t feel sleepy during the day, rather lethargic and low in energy. I get heaps of light sleep but wake up feeling lousy every day no matter how long I sleep or where I sleep or what activity I’ve done during the day or what supplements I’ve tried or what of the many sleep hygiene techniques I’ve tried.
I suspect there are millions of people like me who don’t know what a good sleep is because PLMD is not detected until you have a proper sleep study (Polysomnogram).
I had hoped Mayo Clinic would be a guiding light on PLMD.
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2 ReactionsHello Aussieian,
I too have suffered from PLMD for over 35 years. Do you live close to a Mayo Clinic? If you are able to schedule an appointment with a sleep specialist at Mayo, they would complete a nerve test, and other testing to determine if it is truly PLMD.
I was diagnosed with RLS back then, when I knew after reading and researching, I had PLMD. It was the Mayo Sleep Specialist who diagnosed me with PLMD after listening to me, truly listening to me. I am taking a very small dose of buprenorphine that curbed the leg jerks at night, and at naps (when taken)
I had two sleep studies, one in 2015 and the other in 2023: both were inconsistent with the results. As we age the PLMD becomes worse, and if needed, I will take another sleep study.
Good luck with your journey at this terrible disease.
I was diagnosed with PLMD over 20 years ago. Don't remember scores (3 separate sleep studies), but they were high. I tried about 17 different drugs , but none were effective, except Clonazepam. I take a small dose (2mg) just before bed, & it works fine. Docs are reluctant to prescribe as it is highly addictive & may cause organ damage. I get checked by doc's every year & have had no such problems. Don't mind being addicted, because I can sleep--worth it! Hope this helps, & saves you the pain of going through a lot of the unnecessary side effects I went through. Good Luck!!
Hi Vikkitennis,
Thanks for your quick reply.
I’m in Australia and currently seeing the Sleep clinic at the Flinders University here in South Australia. It’s slow going and a bit frustrating I’ll admit but I’m retired now and am steadily expanding my knowledge more on line and by getting different medical checks and seeing different specialists. I’ve known something wasn’t right about my sleep for a long time, but I had no obvious signs and no RLS. I just knew I shouldn’t feel so drained every day.
Also I never dream anymore like when I was younger ( when I would wake near a REM phase and recall the dream). My deep sleep is impacted and that’s what I’m hoping to improve once I start some meds under guidance of my sleep doctor. I’m yet to be impressed by either of the sleep doctors I’ve seen though.
Thanks again
Hi aureliorod,
Thanks for sharing your pain with me.
And 17 medications, wow that’s scary in itself. Was that through a number of different doctors? It’s great that Clonazepam works for you though and yeah I agree that’s a good addiction to have to have. How much better did your sleep feel and how long did it take to start working?
My younger sister started taking it last year for anxiety and it’s improved her sleep ( she just had trouble falling asleep). The interesting extra was that it cured her Raynauds syndrome also. I have it also so maybe I’ll get the double benefit also.
Sweet dreams
With Clonazepam, I just notice that when I decrease , or stop taking it, I get NO sleep, then end up dozing, all day, while I watch TV or read. I don't remember how many docs were involved, but they were good & I respected them.
Clonazepam started working as soon as I started taking it. I take it as I'm going to bed. Sometimes 20 minutes before, if I'm not really tired, but don't want to stay up late.
I wish you the best to find this journey and find relief.
The tablet buprenorphine has been the best prescribed to me, yet the dry mouth during the night is a problem. I use a dry mouth solution, and rinse during the night.
I continue to wake during the night, but always return to sleep within minutes.