Peripheral neuropathy, RLS and PLMD

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 Unfortunately it was withdrawn from the AppStore a few months before I learned about it.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

@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.

very new to this always looking for something that helps

Welcome @holmes28, It's always good when you can find something that helps. Here are a few more discussions that you may want to look at depending on what information you are looking for.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Is restless leg (RLS) related to seratonin syndrome? Tips for relief?: https://connect.mayoclinic.org/discussion/restless-leg-syndrome-3/
-- Periodic Limb Movement Disorder: https://connect.mayoclinic.org/discussion/periodic-limb-movement-disorder/

Are you able to share a little more about your diagnosis and symptoms you have?

Hi I am new to this group. I was diagnosed with Restless Leg Syndrome a few years back. The neurologist I went to that said I had RLS prescribed Gabapentin, which I was allergic to. He then put me on Carbidopa/levodopa, which my father took for Parkinson. I was not happy with this doctor. I changed and he immediately, slowly weaned me off that med and put me on Ropinrole. Which at first was a miracle. But I was warned it would not be a cure and I have had my dose increased over the years. I tried the new patch Neupro. I had a bad reaction. I have read lots of suggestions and thank everyone. I do not drink much water and will increase and I do like tonic water with a little lime (no gin). I will try to give up my coffee and I love my wine, 1 glass and not every day. I do exercise by walking and riding the bike at the gym and walk on the treadmill. Sometimes the RLS is so bad I just want to cry. I will try to be more proactive.

Greetings @dodeebug, and welcome to Connect. As a group, we are sharing advocates. That means that we learn from each other, share our personal experiences, and practice supportive responses. First of all, I don't have RLS. I do have trauma shivers from neuropathy. I became aware of this forum as a caregiver for my life partner. He has RLS and has been through the wringer with it, starting also with Gabapentin. Currently, on Ropinirole, he has been having some pretty sleepless nights. Recently he began to also have painful Charley Horses almost every night.

One of the recommendations was to significantly reduce or eliminate caffeine. He thought he was following the guidelines until I asked him why he was drinking so much iced tea. For some reason, he didn't think tea had caffeine in it. So, he drank it all day and had RLS at night. On top of that, he was told to start the first part of the Ropinirole dosage at about 4:30 pm. He never could remember until I set his phone alarm for 4:30 pm. Now it looks like both of these changes are making a difference. I am lying here "working" and he has already fallen asleep. Hmmmmm.

Please let me know what recommendations you receive and I will share them with him. Good luck to you.

What other beverages do you drink?

May you be free, safe, and protected from inner and outer harm.
Chris.....

OK - tried the bar of soap last night and .... SLEPT. ALL. NIGHT. coincidence????