Periodic Limb Movement Disorder

Posted by krissyelkins07 @krissyelkins07, Jul 31, 2019

Has anyone suffered or is suffering from PLMD?

Welcome to Connect, @krissyelkins07,

Here’s what I found –
Periodic limb movement disorder (PLMD) is characterized by twitching, flexing, and jerking movements of the legs and arms during sleep. The movements occur every 20 to 40 seconds and may last for minutes or hours throughout the night. People with PLMD don’t know their limbs are moving, and are unable to control or stop them. https://emedicine.medscape.com/article/1188558-overview

Researchers don’t know the exact cause of this disorder. Some think it may be related to low iron levels or a problem with the nerves in the limbs caused by another condition. It’s important to note that PLMD is not the same as restless legs syndrome (RLS). The majority of patients with RLS have PLMD, but the reverse is not true.

You might be interested in viewing this Connect discussion, where several members have shared their experiences:
– Peripheral neuropathy, RLS and PLMD https://connect.mayoclinic.org/discussion/peripheral-neuropathy-rls-and-plmd/

I’m also tagging @johnhans @barbarn @johnbishop @baumgrenze @usafretired15 @clayhere, as they might be able to shed more light on this condition. @krissyelkins07, could you share a few more details? When did this start? Have you consulted a doctor or sleep therapist?

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Hello @krissyelkins07, I would like to add my welcome to Connect along with @kanaazpereira. I would also echo Kanaaz's question and ask have you discussed the periodic limb movement disorder with your doctor or sleep therapist? From what I have read about it, PLMD is associated with sleeping. Here are a few references I found.

National Sleep Foundation – Periodic Limb Movement Disorder (PLMD)
https://www.sleepfoundation.org/articles/periodic-limb-movements-disorder

SleepEducation.org
http://sleepeducation.org/sleep-disorders-by-category/sleep-movement-disorders/periodic-limb-movements/overview-facts

Medical News Today – Periodic limb movement disorder: Symptoms and treatment
https://www.medicalnewstoday.com/articles/317911.php

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@kanaazpereira

Welcome to Connect, @krissyelkins07,

Here’s what I found –
Periodic limb movement disorder (PLMD) is characterized by twitching, flexing, and jerking movements of the legs and arms during sleep. The movements occur every 20 to 40 seconds and may last for minutes or hours throughout the night. People with PLMD don’t know their limbs are moving, and are unable to control or stop them. https://emedicine.medscape.com/article/1188558-overview

Researchers don’t know the exact cause of this disorder. Some think it may be related to low iron levels or a problem with the nerves in the limbs caused by another condition. It’s important to note that PLMD is not the same as restless legs syndrome (RLS). The majority of patients with RLS have PLMD, but the reverse is not true.

You might be interested in viewing this Connect discussion, where several members have shared their experiences:
– Peripheral neuropathy, RLS and PLMD https://connect.mayoclinic.org/discussion/peripheral-neuropathy-rls-and-plmd/

I’m also tagging @johnhans @barbarn @johnbishop @baumgrenze @usafretired15 @clayhere, as they might be able to shed more light on this condition. @krissyelkins07, could you share a few more details? When did this start? Have you consulted a doctor or sleep therapist?

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Thank you for all of the detailed information. I've had PLMD and RLS since I was about 14. I can handle the RLS it's the PLMD that I am constantly fighting. The twitching during the day but mostly at night. The acking and pain in them is unbearable sometimes. I've been on every medication possible until my body doesn't respond to it. I finally did an EEG which came up fine and sleep study. The sleep study came up that I have severe PLMD and RLS and to take 1200 MG of Gabapentin and 600 MG of Mirapex. I work in finance and theres on way I could function that. My doctor never went over my my sleep study he just said over the phone what I told you. I'm wondering how severe is it? What do the PLMD arousal number mean. Will this keep getting worse? I have to take mirapex throughout the day because insurance doesn't like to cover time release. When I was on different insurance they covered Nuepro patches. Those worked so well. My doctor at the time referred me to Seattle doctors after 6 months of seeing him. No one in Seattle specialist in PLMD. Are there other people out there going through what I am? Are there different medications that help better so I don't have off time. Any help would be appreciated. Thank you

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@krissyelkins07

Thank you for all of the detailed information. I've had PLMD and RLS since I was about 14. I can handle the RLS it's the PLMD that I am constantly fighting. The twitching during the day but mostly at night. The acking and pain in them is unbearable sometimes. I've been on every medication possible until my body doesn't respond to it. I finally did an EEG which came up fine and sleep study. The sleep study came up that I have severe PLMD and RLS and to take 1200 MG of Gabapentin and 600 MG of Mirapex. I work in finance and theres on way I could function that. My doctor never went over my my sleep study he just said over the phone what I told you. I'm wondering how severe is it? What do the PLMD arousal number mean. Will this keep getting worse? I have to take mirapex throughout the day because insurance doesn't like to cover time release. When I was on different insurance they covered Nuepro patches. Those worked so well. My doctor at the time referred me to Seattle doctors after 6 months of seeing him. No one in Seattle specialist in PLMD. Are there other people out there going through what I am? Are there different medications that help better so I don't have off time. Any help would be appreciated. Thank you

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@krissyelkins07@kanaazpereira mentioned low iron levels may be related to the PLMD condition. I did find some treatment information and it was mentioned along with other nonpharmacology therapy.

UpToDate – Treatment of restless legs syndrome and periodic limb movement disorder in adults
https://www.uptodate.com/contents/treatment-of-restless-legs-syndrome-and-periodic-limb-movement-disorder-in-adults?topicRef=4892&source=see_link

Have you made any lifestyle changes in your diet to see if they help? I did see that caffeine-containing products such as chocolate, coffee, tea, and soft drinks should be avoided. Also, many antidepressants can cause a worsening of PLMD in many patients and should be reviewed, discussed and replaced by your doctor. This was mentioned in the Cleveland Clinic PLMD information here:
https://my.clevelandclinic.org/health/diseases/14177-periodic-limb-movement-disorder-plmd-in-adults/management-and-treatment

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@krissyelkins07 I'm sorry I didn't see your question about what does the PMLD arousal number mean. I think it means the following — The PLM Index (PLMI) is calculated by dividing the total number of PLMs by sleep time in hours. Periodic Limb Movements Index of more than 5 and less than 25 is considered mild; PLMI of >25 and <50 is considered moderate and >50 is severe. Here's the source:
http://www.jpgmonline.com/article.asp?issn=0022-3859;year=2010;volume=56;issue=2;spage=157;epage=162;aulast=Natarajan

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@johnbishop

Hello @krissyelkins07, I would like to add my welcome to Connect along with @kanaazpereira. I would also echo Kanaaz's question and ask have you discussed the periodic limb movement disorder with your doctor or sleep therapist? From what I have read about it, PLMD is associated with sleeping. Here are a few references I found.

National Sleep Foundation – Periodic Limb Movement Disorder (PLMD)
https://www.sleepfoundation.org/articles/periodic-limb-movements-disorder

SleepEducation.org
http://sleepeducation.org/sleep-disorders-by-category/sleep-movement-disorders/periodic-limb-movements/overview-facts

Medical News Today – Periodic limb movement disorder: Symptoms and treatment
https://www.medicalnewstoday.com/articles/317911.php

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Thank you so much for all of this valuable information!

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I have leg jerks 2 feet off the ground after I eat lunch or dinner. Crap on this feeling news. I have myoclonic jerks not feelings. So, you say PLMD happens only in sleep. Am I different. Help some one. I start jerks as I lay awake in the morning and when starting to get drowsy after meals. Nor Restless leg feeling but physicalo cerebral motor one cell firing jerks. Like a cat Not in sleep!!!help someone..Please

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Hello @bill54321, welcome to Connect. It must be difficult trying to deal with these symptoms and not find any answers. There is an older discussion on Connect where @daisy3, @ctandy1271 and @mhall2eat have discussed Myoclonus – https://connect.mayoclinic.org/discussion/myoclonus/. Hopefully the members may be able to share some suggestions with you if they are still on Connect. I did find some other information that may be helpful to you.

NIH – Myoclonus Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Myoclonus-Fact-Sheet

Mayo Clinic – Myoclonus – Diagnosis & Treatment: https://www.mayoclinic.org/diseases-conditions/myoclonus/diagnosis-treatment/drc-20350462

NCBI – Treatment of Myoclonus (PDF) – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899494/pdf/13311_2013_Article_216.pdf

Has your doctor provided any suggested treatments?

Liked by Lisa Lucier

REPLY
@bill54321

I have leg jerks 2 feet off the ground after I eat lunch or dinner. Crap on this feeling news. I have myoclonic jerks not feelings. So, you say PLMD happens only in sleep. Am I different. Help some one. I start jerks as I lay awake in the morning and when starting to get drowsy after meals. Nor Restless leg feeling but physicalo cerebral motor one cell firing jerks. Like a cat Not in sleep!!!help someone..Please

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Hi, @bill54321 – I wanted to add my welcome to Mayo Clinic Connect and also introduce to you even more members who are familiar with myoclonic jerks and may have input on whether you are different in having them not only in sleep, but when you lay awake in the mornings or when starting to get drowsy after meals. @jenniferhunter has talked about myoclonic jerks, as has @kerivb and @lizaa @nikkyuze.

How have you managed these myoclonic jerks thus far, bill54321? Are you taking any medication for this at this time?

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@lisalucier

Hi, @bill54321 – I wanted to add my welcome to Mayo Clinic Connect and also introduce to you even more members who are familiar with myoclonic jerks and may have input on whether you are different in having them not only in sleep, but when you lay awake in the mornings or when starting to get drowsy after meals. @jenniferhunter has talked about myoclonic jerks, as has @kerivb and @lizaa @nikkyuze.

How have you managed these myoclonic jerks thus far, bill54321? Are you taking any medication for this at this time?

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@bill54321 When I had myoclonic jerks it was when I was passing out during a painful nerve conduction test and my stress level was pretty high. It makes me wonder if it is part of a fight or flight response. That's just a hunch; I don't have data to support it. The doctor sent me to a sleep study and I did kick my leg as I was falling asleep. Sometimes I wake myself up doing that and it seems to be when I'm half asleep half awake. I do have twitches from time to time when I'm awake, but don't think about it. I think stress causes more of it. Twitches can also happen from pressure on nerves and we all develop patterns in our fascia of the way we move and rest. A physical issue like that can be treated with myofascial release which is a form of stretching and physical therapy. The fascia is a big net that can get stuck and everything held in it can get stuck and stop moving properly and it can compress a muscle or nerve. When I am stressed, my body reacts, and muscles and fascia tighten up. My physical therapist helps and I do a lot of stretching on my own. My other thought could be something like a magnesium deficiency which is common. Magnesium helps muscles relax and is needed for detox pathways in the body. We do have a discussion on Myofacial Release. I don't know if it will help, but it is something to try and your body can learn to relax doing this. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@bill54321 Hi Bill, I developed Exaggerated Sleep Myoclonus 10 years ago, as a reaction to a drug called Reglan. My jerks are mainly when falling asleep and waking, feeling like electric shocks. They happen in all my extremities and body-even my diaphragm/belly. I do have mild ones here and there while awake. I have been on Depakote and Klonopin, but in the last couple of years with very good control. I also realized many of my triggers were caffeine, stress, and lack of sleep. I know we can't get rid of these things in our life (I still like my coffee 🙂 ), but it helps to prepare you to know when you might have flare-ups. I was able to wean off of Depakote, and taper my Klonopin down to 3/4 of the dose and doing well. Jerks are still there but not any worse. I can honestly say I have gotten used to them, and I don't allow them to bother me anymore, and go on with life. Also, there are 8 different types of Myoclonus, you can find on National Institute of Neurological Disorders. But a neurologist is best suited to decide which one you have. Hang in there Bill! It will be ok! –Prayers for you.

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Could you post here or private message me the 8 different types of Myoclonus. I have no problems with sleep. Jerks are 2 feet high just before falling asleep or when drowsy during the day after a meal when leaning back to read or watch T.V. First I was told I had Restless legs. Then I found Period leg motion syndrome. Now I realize I have Myoclonus Syndrome. I am a retired Physical Theraipst and know too much. Thoughts on medication

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@bill54321

Could you post here or private message me the 8 different types of Myoclonus. I have no problems with sleep. Jerks are 2 feet high just before falling asleep or when drowsy during the day after a meal when leaning back to read or watch T.V. First I was told I had Restless legs. Then I found Period leg motion syndrome. Now I realize I have Myoclonus Syndrome. I am a retired Physical Theraipst and know too much. Thoughts on medication

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Hi @bill54321, you'll notice that I removed your email address from your post. We recommend not sharing personal contact information in a public online forum. We don't want you to get unwanted spam as a result. Instead we recommend using the private message function. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other. If @lizaa posts about the different types of myoclonus here in this discussion, we all learn.

Types of myoclonus can be categorized as .
– Physiological myoclonus
– Essential myoclonus
– Epileptic myoclonus
– Symptomatic (secondary) myoclonus

See details of each of these categories in these 2 articles.
https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459
https://rarediseases.org/rare-diseases/general-myoclonus/

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@lizaa

@bill54321 Hi Bill, I developed Exaggerated Sleep Myoclonus 10 years ago, as a reaction to a drug called Reglan. My jerks are mainly when falling asleep and waking, feeling like electric shocks. They happen in all my extremities and body-even my diaphragm/belly. I do have mild ones here and there while awake. I have been on Depakote and Klonopin, but in the last couple of years with very good control. I also realized many of my triggers were caffeine, stress, and lack of sleep. I know we can't get rid of these things in our life (I still like my coffee 🙂 ), but it helps to prepare you to know when you might have flare-ups. I was able to wean off of Depakote, and taper my Klonopin down to 3/4 of the dose and doing well. Jerks are still there but not any worse. I can honestly say I have gotten used to them, and I don't allow them to bother me anymore, and go on with life. Also, there are 8 different types of Myoclonus, you can find on National Institute of Neurological Disorders. But a neurologist is best suited to decide which one you have. Hang in there Bill! It will be ok! –Prayers for you.

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This is reply # 2 A cat has a twitch….myoclonic jerlk has an anatomy In the motor cortex, 1 single motor nerve and it's branches fire(4S area). I believe that NO ONE has discribed this. Let me, as a Physical Therapist of 40 yrs active practice enlighten you.and any neurologist listening. Read "Bobath Cerebral Palsy" The book, 1953" discribes spinal reflexes and how to inhibit them.For example, The head position on a "tonic Neck Reflex" when rotated right cause the arm on the right to extend and the one on the left to flex. The reverse is true if the head is turned left. If the head is mid-line and flexed both arms flex. If the mid-line head extends, both arms extend. A similar thing happens in the "Cross Extensor Reflex to the legs and also to the feet. Nerves cross over to the othe rside (dissication of the cord)in the neck As the motor nerve descends, it crosses synapes chemically at various levels. These synapses are also intervened by sensory nerves crossing across at various levels from a connection across the spinal cord. So your 4S single motor units from the motor cortex may (Recruit) other reflexes and become a sysnergist action by the time it reaches the feet. Why does it affect the feet???Is it because the feet are further away, This would suggest a vascular component. Also a endoconogy asdpect. You can sleep better idf you rub tour lower kegs with Magnesium Jell..(Note citric not nitric(Magnesium citric is next to the alcohol section at Smith and is 99c a bottle. Don't get hooked on the expensive stuff. So, they say Myoconus is caused by nerve damage, tumor, or reaction to drugs and a few others. Let us take a look. The endocrine system has not fully been explained. A lack of a certain enzyme in the hypothalmus may be contributong to all of these movement disorders. Who at Mayo has been talkingi about them.? Calcium is common but if too much paralzes you, like it did me. Stopped those calcium shot for Osteopenia in a hurry. But also, lack of calcium can lead to harmone problems causing restless leg motions,etc. Now It should be noted that the brain vacular system has a barrier different from general transfer of osmatic chemicals across membranes. If the brain get too much pf a chemical and is overloaded in that respect, it affect motor movements and parkinsons. What does Mayo clinic say about this. Do we lay people have to do all the researching. All I hear is "Parrot" Well., the book says this crap. Area I need answers on. 1)Brain Barrtier and chemicals involved causing exascerbation of movement disorders, 2) Endroconlogist answer To thyroid, Thymus and organ related chemical that effect the brain barrier and brain related motion problem of parkinsins, ataxia, mid-brain etc, 3) better understanding of imagery locally or at mayo you ascertain pressure from ? or tumors in the cord and brain 4) I have had neck and back surgery, have stenosis, need a walker to go past 10 feet. How would you diagnose nerve damage contributing to movement disorders. 5). I have C 6,7 numbness pattern that is shutting my ability to use my right arm down. I regained motor movement, but the problem is numb shoulders, musclutaneuos and thumb pattern that is turn more into pain, Can't do surgery, so what???
I do hope some one from Mayo is looking at this. I Live in Taos New Mexico. What does Arizona, Mayo have to offer???……
i

REPLY
@bill54321

This is reply # 2 A cat has a twitch….myoclonic jerlk has an anatomy In the motor cortex, 1 single motor nerve and it's branches fire(4S area). I believe that NO ONE has discribed this. Let me, as a Physical Therapist of 40 yrs active practice enlighten you.and any neurologist listening. Read "Bobath Cerebral Palsy" The book, 1953" discribes spinal reflexes and how to inhibit them.For example, The head position on a "tonic Neck Reflex" when rotated right cause the arm on the right to extend and the one on the left to flex. The reverse is true if the head is turned left. If the head is mid-line and flexed both arms flex. If the mid-line head extends, both arms extend. A similar thing happens in the "Cross Extensor Reflex to the legs and also to the feet. Nerves cross over to the othe rside (dissication of the cord)in the neck As the motor nerve descends, it crosses synapes chemically at various levels. These synapses are also intervened by sensory nerves crossing across at various levels from a connection across the spinal cord. So your 4S single motor units from the motor cortex may (Recruit) other reflexes and become a sysnergist action by the time it reaches the feet. Why does it affect the feet???Is it because the feet are further away, This would suggest a vascular component. Also a endoconogy asdpect. You can sleep better idf you rub tour lower kegs with Magnesium Jell..(Note citric not nitric(Magnesium citric is next to the alcohol section at Smith and is 99c a bottle. Don't get hooked on the expensive stuff. So, they say Myoconus is caused by nerve damage, tumor, or reaction to drugs and a few others. Let us take a look. The endocrine system has not fully been explained. A lack of a certain enzyme in the hypothalmus may be contributong to all of these movement disorders. Who at Mayo has been talkingi about them.? Calcium is common but if too much paralzes you, like it did me. Stopped those calcium shot for Osteopenia in a hurry. But also, lack of calcium can lead to harmone problems causing restless leg motions,etc. Now It should be noted that the brain vacular system has a barrier different from general transfer of osmatic chemicals across membranes. If the brain get too much pf a chemical and is overloaded in that respect, it affect motor movements and parkinsons. What does Mayo clinic say about this. Do we lay people have to do all the researching. All I hear is "Parrot" Well., the book says this crap. Area I need answers on. 1)Brain Barrtier and chemicals involved causing exascerbation of movement disorders, 2) Endroconlogist answer To thyroid, Thymus and organ related chemical that effect the brain barrier and brain related motion problem of parkinsins, ataxia, mid-brain etc, 3) better understanding of imagery locally or at mayo you ascertain pressure from ? or tumors in the cord and brain 4) I have had neck and back surgery, have stenosis, need a walker to go past 10 feet. How would you diagnose nerve damage contributing to movement disorders. 5). I have C 6,7 numbness pattern that is shutting my ability to use my right arm down. I regained motor movement, but the problem is numb shoulders, musclutaneuos and thumb pattern that is turn more into pain, Can't do surgery, so what???
I do hope some one from Mayo is looking at this. I Live in Taos New Mexico. What does Arizona, Mayo have to offer???……
i

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Hi, @bill54321 – Mayo Clinic Connect is a patient to patient support community, so rather than expert input, what you will find here is "lived experience" from other patients.

If you'd like to consult with Mayo Clinic in Arizona about your condition, you may go to this appointment page http://mayocl.in/1mtmR63 and arrange a medical consult by phone or online.

You said surgery can't be done in your situation. I'm supposing you mean for your right arm? Have the doctors you've seen thus far ruled that option out, then?

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