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Peripheral neuropathy, RLS and PLMD
Neuropathy | Last Active: May 9, 2023 | Replies (40)Comment receiving replies
This contribution (my first) is PLMD specific.
I see no new posts since June 2018. Is this group still 'active?'
Ten years ago my wife documented PLMD in my legs while I was sound asleep. She is a remarkable sleeper, so once she analyzed the problem, she could ignore it and sleep. Her notes follow:
There was an interval of +/- 10 seconds between each spasm. And the spasms continued at least for 5 minutes, when I apparently fell asleep, so I don’t know if they stopped or I just relaxed.
J was unaware of it happening. This seemed likely to me, as he was definitely asleep.
My perception is that the muscles in his upper thighs spasm, two or three times. There is a fairly strong spasm, as if he “elbowed” me with his knees, followed by spasms which seemed to be less intense, and then building again in intensity. I was too busy counting to get an accurate sense of intensity, however.
My observations continue:
More recently, before I get to sleep, the PLMD process starts. Once it has started I cannot fall asleep. I placed my fingers on the leg that was moving and sensed a tightening of the long tendons (groin to knee) just before the spasm. I reasoned that it might pay to massage and put pressure on the attachment points. I've been able to use this technique to get to sleep. Has anyone else tried this technique?
I've been told that I have 'tight hamstrings.' Are there good exercises or is there physical therapy that works on overcoming PLMD, perhaps by focusing on loosening the hamstrings?
Consequent with the discovery that I have PLMD I developed 'sore legs.' Everything from the hip joints down is mildly painful. The skin even feels 'tight' sometimes as I sit down. It makes sense to me that every time PLMD takes over while I sleep my legs get an unsupervised and uncontrolled 'workout' that may be harmful over time. Is this documented?
I found an iPhone app (I have a classic iPhone 5 and prefer the small format) mentioned that allowed the logging of PLMD with no extra hardware. Unfortunately it was withdrawn from the AppStore a few months before I learned about it. Have I missed something? Having to be 'wired' would probably keep me awake.
I cannot yet post a link which mentions the app, KickSleep:
Google the string below, including the quotes, and it should produce one hit.
"OPUS: Implicit night sleep monitoring using smartphones"
I certainly want to explore all the alternatives before becoming dependent on Parkinson's Disease medications to get a 'good nights sleep.'
Comments anyone?
thanks
baumgrenze
Replies to "This contribution (my first) is PLMD specific. I see no new posts since June 2018. Is..."
Hello @baumgrenze, I would like to add my welcome to Connect along with @hopeful33250. Thank you for sharing your post. It's really great that your wife was able to help you analyze what's happening when you are asleep. I'm not sure these are the same exercises that Teresa mentioned but I think they could be helpful:
The Foundation for Peripheral Neuropathy - Exercises and more
-- https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/#strength
@baumgrenze have you ever thought about doing an overnight sleep study? I recently had one done at Mayo Clinic where I learned I had severe obstructive sleep apnea which was a big surprise to me since I always thought I slept OK even though I woke up a few times a night. Restless Leg Syndrome is one of the symptoms and sounds like you might be experiencing this?
Sleep Disorder Program - Mayo Clinic Department of Neurology
-- https://www.mayo.edu/research/departments-divisions/department-neurology/programs/sleep-disorder-program
I'm a little over 3 months using a CPAP machine and still getting adjusted but what I'm learning is that it can sometimes take a year or so. There is another discussion on Restless Leg Syndrome that you may find helpful for learning what others are doing for treatments.
Groups > Sleep Health > Restless Leg Syndrome
-- https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/
Hope this helps.
John
@baumgrenze - I think this thread just went dormant last summer as no one seemed to have anything to add. I have called this thing RLS or PLMD, sometimes I think it may come from the spine. Evenings when I try to relax, the leg starts to spasm. (That's when I think it is RLS). I do take Requip, a Parkinson drug, in the evenings and at bedtime. Trying to prevent the spasms, I take three meds about 5pm: Gabapentin, Tramadol and Requip. A sitting position in the evenings does NOT seem to help, having my back flat seems to help more, but that is probably more an individual thing. Also - I have a painful stretch along thigh (maybe along I-T band? or possibly post herpetic neuralgia?) from hip to knee - sounds like you? I do notice that when the outer thigh seems sore I have more pain and movement. This offers no help - but possible working together we might find something that does help.
Connect
Hello @baumgrenze and welcome to Mayo Connect,
I am sure that John (@johnbishop) will respond to your first post soon, however, I just wanted to take a moment to say hello and let you know that Connect is a great place to find encouragement, support and suggestions.
John recently posted a link about exercises which was very good. I looked for it but could not find it easily, but I'm sure he will find it and provide the link for you. They were great exercises for all parts of the leg and for balance as well.
I have a Parkinson's disorder and find that physical therapy a couple of times a year as well as regular exercise are important strategies to keeping my muscles from constricting and causing pain and restlessness.