Has anyone of you been diagnosed with Restless ... - AMN EASIER

AMN EASIER

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Has anyone of you been diagnosed with Restless Leg Syndrome (RLS)?

SongStream profile image
9 Replies

I'm asking because I met with physical medicine at my neurologist's referral concerning my unrelenting pain and spasms when baclofen no longer proved effective. I had mentioned my spasms were worse at night making physical medicine to believe that "spasticity less likely as the primary cause". So, my neurologist had some additional thoughts on the matter and suggested possible RLS and to get lab for ferritin levels mentioning drugs treatable for RLS. Here's the thing, I started taking taking tizandine for spasms and its treatment is working. Now, spasticity as we know it, involves the tightening of muscles (feels like concrete for legs) which I have throughout the day and constantly have to stretch for temporary relief. I reserve these drugs at night because it makes me drowsy during the day. The muscle spasms I have described are the feet jerking and twitches along with fasciculations you can actually see on the surface of this skin with random nerves firing. Is this RLS? I should note that these muscle spasms sometimes occur during the day but again nothing like at night.

I told my neuro I'm game and I don't want to be uncooperative as we do have very good rapport. I just don't want to reinvent the wheel. So, good folks, what is your take?

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9 Replies
monkeybus profile image
monkeybus

Some doctors don't believe restless leg syndrome exists.

A lot of Americans are diagnosed with it, not so many in the UK.

In France "heavy legs" is a common diagnosis. Count me in for heavy legs.

Years ago, like 10 years ago, I heard about RLS on the radio. I was convinced I had it. But I believe there is a world of difference between RLS and spasms like some of us suffer from.

All that stops mine is Lyrica and/or Gabapentin. And booze and marijuana.

But what do I know? Anyone else?

Cherie profile image
Cherie

I have had spasms and twitchy legs at night and the only thing that works for me is Lyrica. I can't take Lyrica during the day due to side effects, and the same with Baclofen.

julie_ profile image
julie_

I was never diagnosed but my legs are restless! I know I move around in my sleep a lot but I believe it is due to body aches: I've been on my side for too long, so my hips or back ache and I need to move my weight off, for example. My legs move freely to adjust to a comfort level. This happens likely once an hour - I'm woken every time I move - but I am actually able to feel rested most nights. I sleep normally 5-6 hours per night. Any more and I feel strong body aches and I'm not rested.

By the way, I take Tizanidine 2mg at bedtime only. My neurologist thought it helped to relieve pain so that I could sleep. It's not 100% effective, but I will take it. During the day, I'll take baclofen and 4-AP.

SongStream profile image
SongStream

Thanks all for your comments. I explained to my neuro that I have these spastic episodes at times during the day as well, though not as frequent at night. Also said that tizanidine is helping and he feels there is no need for other medication. I appreciate him looking at the full picture. But in sum, RLS it is not, although I do sympathize for those who have it if their symptoms are similar to feet kicking and twitches. On another note, I've had the misadventure with unrelenting pain and spasms that had caused insomnia now for 2 weeks. Even after I've found satisfactory treatment, the insomnia prevailed. Just got my dose of temazepam so I'm looking forward to actually getting some real sleep and resuming some normalcy. It had been a hellacious 2 weeks. Cheers to you all!

nikolahn profile image
nikolahn

More then two years ago I have saffered from strong morning legs muscle cramps/spasms, legs twitching over the whole day, muscle mass deterioration - ALD patient.

After 3-5 times weekly 30 minutes exercise against fitness machines the problem is gone! Two years exercising is a must, the minimum to fix your legs status.

I am taking the suplement Cerluten too.

wilburlois15 profile image
wilburlois15

My thought is that restless leg syndrome is a symptom rather than a diagnosis. Most of us on here will have peripheral neuropathy and that gives us the spasticity and the spasms, the latter of which provides the restless legs. Having said that, I'd imagine RLS is a symptom of many other diseases which cause peripheral neuropathy, for instance including MS.

Without a cure to our underlying problem the best thing we can do is treat the symptoms, with drugs, exercise, etc. Good luck!

SongStream profile image
SongStream

Thanks for your comments. I am adamant that physical conditioning is essential as part of our treatment along with deep stretches. I took the lab tests measuring iron and I am not deficient, thus, RLS is out of the equation. It is in fact the spasticity and spasms we all endure. Fortunately, my stayed use of baclofen and replacing with tizanidine has been beneficial. It is a constant shuffle of symptoms that we experience. I must say that if I work out intensely, it will affect my overall symptoms. Moderation and heedfulness is necessary.

Seifert_09 profile image
Seifert_09

For what it’s worth I have found clonazepam to be very helpful at bedtime. My only caveat would be that it almost works too well. Meaning just be careful when you wake up because the legs can be a bit wobbly. That being said once I shower and stretch. My legs become more controlled. All this is a bit frustrating at times. I’m really not a fan of popping pills, but if it can help give me some semblance of normalcy then I’m all in. Let’s just all keep moving, learning, and living!

SongStream profile image
SongStream

Seifert, I know what you mean on morning rising and your limbs are like jelly. There was an interim when baclofen and gabapentin wasn't working and I increased my dosage. Thus, a drug hangover effect had me walking solely with the aid of walls.

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