Stranger aspects of my RLS

[stockton2malone2]

I have noticed there are some aspects of my RLS that seem atypical, so I wanted to see if anyone else could relate and also hear about ways in which your RLS may be unique.

1. Ever since it got bad enough to prevent me from sleeping it has been steadily moving up my body. Over about 7-8 years it started in my feet/calves, moved to calves, calves/thighs, thighs, thighs/hips, and now hips/lower back.

2. While it usually has a primary location, the RLS can go all over, and the mid/upper back is the absolute worst. There is no way to kick or shake to keep my back in motion and keep the RLS at bay. And the back feels like it is super not designed for all that tension and seizing.

3. Over time the RLS has sped up. I used to be able to feel it coming and could even fight it off for a bit. Now it happens so quickly its essentially a muscle spasm.

4. If I somehow manage to stop the RLS in one part of my body using an army of counter stimulus type devices, it just moves somewhere else.

5. These are probably not rare at all but I'm terrified of breaking my legs or being confined in some way, and holy cow does it hurt, especially when Im not on opiates. Like hot razor blades made of cutting lasers shooting down my nerves.

[ViewsAskew]

I wonder if you have two things going on - both RLS/WED and neuropathy, for example.

If it has moved, however, my first thought is augmentation. Are you taking anything for it?

[stockton2malone2]

Interesting! I went through augmentation and got off DAs about 4 years ago. I've been taking opiates for close to 2 years now, finally settling on buprenorphine for the last 8 or so months.

I sometimes wonder if wellbutrin caused the move because RLS really started bouncing around the same time I started it (not long after resolving augmentation), but that could just be coincidence. About a year ago once I had no other reasonable options left I completely got off WB just to be sure it wasn't somehow making my RLS worse, but it only made a minimal difference in severity and the RLS didn't return to my lower legs.

[ViewsAskew]

I have a bit of a theory - essentially, I think there is too much variability in how we all describe it to simply be an issue of language and communication - there must be "types" of RLS/WED. Some of us say it is painful, others say not at all. For years, the experts have said it's the same but we describe it differently either because we interpret pain differently or that, for example, tickling can be perceived as painful if it goes on too long. Or take whether we move voluntarily or involuntarily. Experts say it is always voluntary - but I guarantee that some of the RLS/WED I have results in involuntary movements. And, as you described, these come at me fast and result in my leg almost seizing.

Are there "stages" to the disease? Does augmentation create a "new" version? Are periodic limb movements, for some of us, something that occurs while waking (and what we experience as this more violent and fast RLS/WED)? Do some medications create changes in the disease?

We need an extremely robust multi-year study. Imagine if doctors from around the world captured the data from their patients in input it over a ten year period.

[Frunobulax]

I have a bit of a theory - essentially, I think there is too much variability in how we all describe it to simply be an issue of language and communication - there must be "types" of RLS/WED. [...]

Are there "stages" to the disease? Does augmentation create a "new" version? Are periodic limb movements, for some of us, something that occurs while waking (and what we experience as this more violent and fast RLS/WED)? Do some medications create changes in the disease?

Agreed. In the end, RLS is a description of a specific symptom. One symptom can be caused by different root causes. I think it is very likely for RLS that there are very different root causes.

One major support of this theory, IMO, is the efficacy of iron IVs. Seems that 50% of the patients get significant or complete relief from their symptoms, while the other 50% see little or no improvement. Personally, I think the first group has a functional iron deficiency (which is resolved by the IVs) while the second group has issue with iron transportation (for example high oxalates, which can block transferrin from moving iron where it is needed).

Most doctors -- unfortunately -- consider only symptoms. Which is fairly ridiculous. "Your car doesn't start" is a very precise description of a symptom, and yet it is clear that there may be dozens of different root causes, and to fix the car we must fix the correct root cause. Yet in medicine have the reversed approach: For each symptom we have a fixed list of things to try.

[Polar Bear]

I think people just have a different idea of what is and isn't voluntary.
My legs do not move of their own accord. They twitch and squirm inside but do not move.
When I can bear it no longer I have to move them. That would appear voluntary.
However I must make my legs move, I have no choice. So is it really a voluntary movement. Just a thought.

[Frunobulax]

I think people just have a different idea of what is and isn't voluntary.
My legs do not move of their own accord. They twitch and squirm inside but do not move.
When I can bear it no longer I have to move them. That would appear voluntary.
However I must make my legs move, I have no choice. So is it really a voluntary movement. Just a thought.

This is how I would describe my RLS symptoms nowadays. A few years ago, when I was augmenting on Pramipexole, I definately had involuntary movements whenever I rested, like watching TV in the evening. No strength of will could control my legs for more than a few seconds.

Also, I can reliably correlate my RLS with leg movements in my sleep, which I would consider involuntary. If my symptoms are well controlled then I have up to 15 movements per hour, averaged over a night of sleep (8-10 movements is a good night). With RLS I can have up to 50 movements per hour before I actually wake up. Whenever I wake up (in the night or in the morning) with that "twitch and squirm" that you describe (good choice of words), I check my log and invariably find that I had 30+ movements per hour. PLMS however is not required, I can have 30+ movements without any regular patterns. (I define PLMS loosely as 5 or more movements that occur at an nterval of between 10 and 90 seconds, which is a much broader definition than PLMS usually defined by neurologists.)

Haven't watched these numbers intensely for a while, as my symptoms are well under control. But currently I'm trying to reduce my oxycodone a bit further and it seems that the latest reduction may have been a tiny bit optimistic :-\

Can you tell that I'm a data nerd? I try to quantify everything. Numbers can lie, but do so less often than personal observations.

[badnights]

I think people just have a different idea of what is and isn't voluntary.
My legs do not move of their own accord. They twitch and squirm inside but do not move.
When I can bear it no longer I have to move them. That would appear voluntary.
However I must make my legs move, I have no choice. So is it really a voluntary movement. Just a thought.

Even though WED/RLS movements are driven by an un-ignorable compulsion, they're still voluntary, at least until they get extreme or unless the part that needs to move is locked down, in which case the movement happens involuntarily. I agree, the terminology can be misleading. Is the movement really voluntary if it arises from a compulsion that can't be ignored for long? (and punishes you the longer you ignore it)?

In my opinion, one of the worst aspects of WED/RLS is exactly that the movements are voluntary, because you have to be awake to make a voluntary movement. If my legs were simply to kick on their own while I was sleeping,even though that wouldn't be great, it wouldn't be as bad as those godawful sensations forcing me awake, and forcing me to move "voluntarily".