Peripheral neuropathy, RLS and PLMD

Posted by barbarn @barbarn, Apr 26, 2018

My husband says "which came first, the chicken or the egg" – and I wonder, what did I have first? Neuropathy or RLS or PLMD? It almost seems they are totally connected. Even as a child, when I came home from school my grandmother would rub my legs because they hurt so badly. Back then, it was called "growing pains". Now I am 80, prediabetic, and my dr calls it "diabetic neuropathy". The worst of it seems to be only on one side, and last year while I was in the hospital I also got shingles on that same leg! Now, perhaps I can add post herpetic neuralgia to the list of symptoms. But worst is dealing with the RLS every. time. I. try. to. relax. in. the. evening! I take Gabapentin, Requip, Tramadol, Ibuprofen, Hyland's Restful Legs. Last night the RLS or PLMD started not until I went to bed, and finally after dealing with it for 3 hours I tried the little stem unit I got at Target. Voila!!! Sleep at last!!! It's a bit bulky to wear to bed, but HEY! I wasn't even aware of it again til I awoke this morning!!! Just one more thing for RLS sufferers to try?

@baumgrenze

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

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@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.

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