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Peripheral neuropathy, RLS and PLMD
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?
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But does the exercise relieve the pain?
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2 ReactionsHi Leonard @jakedduck1 -- from my own personal experience I can't say that exercise relieved pain associated with my PMR but I do feel it keeps it from getting worse. I would add a qualifier for me - when I was really in pain from the PMR I would not be exercising but when I felt a little better I tried to do different exercises which I do think helps.
Excerpt from the Arthritis Foundation on PMR:
-- https://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/
Under the Polymyalgia Rheumatica Treatment section:
"Both exercise and rest play important roles in PMR treatment. Regular exercise is essential for maintaining joint flexibility, muscle strength and function. Good forms of exercise include walking, riding a stationary bicycle and exercising in a pool. Rest is also necessary to give the body time to recover from exercise and other activities."
John
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1 Reactionbarbarn….SO glad it works for you. When I works, it WORKS!!!!!! What brand of bar soap did you use? As I may have mentioned, some find that when some do work, that DIAL won't. Make a note what brand you have, as when the soap wears down, YEARS from now (literally) !!!!!!!!!, you may forget. I started with one bar back in maybe the 1970's and I still have more than half of it left. And if someone does you the favor of making your bed, make sure they know about the soap and don't throw it out, thinking you are some nut! gailfaith.
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4 ReactionsEven with dealing with seizures, there still is medicine for you.. not only in pill form. They have a machine that slowly raises and lowers the legs to really help some folks but there are at least 4 really, really good meds out there and one of the drugs is called pramapexole or the name brand would be mirapex. You can start with such a small little bit, Ive known people to just munch a tiny sliver of the pill and have that work. Also Requip... those are the drugs that help transport the dopamine from the brain down into the spine so it can be used to relax those legs. That's the main problem, our brains have plenty of dopamine, it just doesn't make it where it needs to go to work for us. Gabbapentin can pull double duty but it's a little less effective with RLS than some of the newer drugs. My max was 2700mg and I met some people that did 3400 but they didn't feel very well. You MUST follow your doctors orders. Gaba's powers are too great for a friend to advise you.. it's good stuff for painful neuropathy.
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2 ReactionsI just want to comment here that perhaps you have more than neuropathy alone going on. You may have some muscle atrophy, there are also tendons and all kinds of things that can go wrong in the feet. I too have neuropathy at least to the waist and beyond, perhaps to the neck? There's a giant spot in my back that has no feeling and it extends to the shoulder blade. Mine was a rapid progressing neuropathy and it is more pronounced if edema is present.
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3 Reactionsbarbarn, I see I misprintt in the first line, Sorry. It should read :"When it works, it WORKS." > galfaith here again.
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1 ReactionHey Mr. Fudd,
You sound like your in a bad way. I have been taking Neurontin or Gabapentin on and off for over 40 years primarily for seizures at the max dose of 3600mg a day. It didn’t do much if anything for my seizures or Neuropathy. I hope you find some relief Elmer.
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1 ReactionThis 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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3 ReactionsHello @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.
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2 ReactionsHello @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
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