Atypical Symptoms? (some newb questions)

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Ellephant
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Atypical Symptoms? (some newb questions)

Post by Ellephant »

Hey there,

Although I'm like 90% positive with the affirmation of my healthcare team that I do in fact have RLS, I wanted to ask about some of the atypical stuff that's going on with my symptoms that is preventing us from being 100% sure. (We can't just try a dopamine agonist and see how I respond because ferritin is too low, and we don't want to start with iron infusions until we have a more clear picture of what's going on with me).

Okay so my questions are:

Does anybody else find that their symptoms are in fact not actually worse at night?

Mine are certainly not better at night, but they're not any worse than they are at any other time of the day when I'm lying down. Also, has anyone else noticed that their symptoms are actually less when initially going to sleep, and WORSE after waking up an hour or two later? Or after laying in bed awake for a few hours? I know the standard is that the symptoms are worst at night and generally ease up into early morning, but I find that the opposite is true for me, when I'm trying to fall asleep between like midnight and 3am, my symptoms are usually better than when i'm trying to fall back asleep between 6-9am.

Does anyone have toes that just constantly twitch, but stop twitching the second you place them on a solid surface, even when they are completely still?
My toes will twitch into eternity when they're dangling in the air or when I'm lying down and my feet aren't touching anything else - but they stop when I'm standing on solid ground AND when I'm in bed and I place a blanket by the bottom of my feet, so my toes can press up against it. I never actually bind my feet/toes though, they are in no way physically prevented from twitching and moving when I do that. Moving my toes voluntarily will stop the twitching, but keeping them perfectly still when placed against a surface will also stop the twitching. I also have random twitches pretty much absolutely everywhere in my body, including my back, neck (makes my head nod), hips, calf muscles, etc., but those are sudden and random, not constant like my toes.

Does anyone find that the RLS sensations in your legs sometimes cannot be or are not relieved by movement, only by intense stretching to the point that you're almost pulling your legs out of the joints?
One of the biggest hangups we're having with my diagnosis is that more often than not, movement doesn't help at all. My symptoms are actually even more intolerable when I'm walking slowly or at a moderate pace than when I'm standing still. Does this happen to anyone else? Most of the time the only thing that helps is if I walk stiff-legged, without bending my knees at all so that all the muscles are being pulled and stretched and exerted. Doing really heavy weight-bearing exercises like walking up a massive incline or running up flights of stairs also helps. On the other side, I have taken note of the fact that I am constantly moving my feet around, and have been doing this in bed for many years but just assumed it was a nervous habit like when people bounce their leg up and down. But that one thing aside, basically, the doctors are having a huge issue with the fact that movement in general doesn't seem to relieve a lot of my symptoms. When I have them at night and they are preventing me from sleeping, if I get up and walk around and pace, it does nothing to help.

Does anyone else only feel as if the unpleasant sensations are coming from deep inside the leg, as opposed to towards the surface?
My doctors are hooked on the fact that most RLS patients describe their symptoms as, at least some of the time, something crawling on their skin. I have never felt that before in my life, except when something is actually crawling on my skin. What I feel is built up energy combined with unwarrantedly sore, achey muscles deep inside my legs. I do sometimes get a tingly numb sensation that feels more towards the surface, but that doesn't bother me nearly as much, doesn't come with an urge to move/pent up energy, and still doesn't feel like there's anything crawling on my skin.

I know there's no "standard" for RLS symptoms, so I'm trying to get a feel for just how "atypical" these things are.
Thanks!

ViewsAskew
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Re: Atypical Symptoms? (some newb questions)

Post by ViewsAskew »

Ellephant wrote:Hey there,

Although I'm like 90% positive with the affirmation of my healthcare team that I do in fact have RLS, I wanted to ask about some of the atypical stuff that's going on with my symptoms that is preventing us from being 100% sure. (We can't just try a dopamine agonist and see how I respond because ferritin is too low, and we don't want to start with iron infusions until we have a more clear picture of what's going on with me).

Okay so my questions are:

Does anybody else find that their symptoms are in fact not actually worse at night?

Mine are certainly not better at night, but they're not any worse than they are at any other time of the day when I'm lying down. Also, has anyone else noticed that their symptoms are actually less when initially going to sleep, and WORSE after waking up an hour or two later? Or after laying in bed awake for a few hours? I know the standard is that the symptoms are worst at night and generally ease up into early morning, but I find that the opposite is true for me, when I'm trying to fall asleep between like midnight and 3am, my symptoms are usually better than when i'm trying to fall back asleep between 6-9am.


No. Even when I was augmented and had 24/7 symptoms in which I had to be standing, moving, or in yoga poses ALL the time, it was still worse in the 9 or 10 PM to 2 AM range. That is considered standard. Some people do find that they can fall asleep and the symptoms awaken them, though. Now, that said, that is given that you are on a "standard" internal clock.

Ellephant wrote:Does anyone have toes that just constantly twitch, but stop twitching the second you place them on a solid surface, even when they are completely still?
My toes will twitch into eternity when they're dangling in the air or when I'm lying down and my feet aren't touching anything else - but they stop when I'm standing on solid ground AND when I'm in bed and I place a blanket by the bottom of my feet, so my toes can press up against it. I never actually bind my feet/toes though, they are in no way physically prevented from twitching and moving when I do that. Moving my toes voluntarily will stop the twitching, but keeping them perfectly still when placed against a surface will also stop the twitching. I also have random twitches pretty much absolutely everywhere in my body, including my back, neck (makes my head nod), hips, calf muscles, etc., but those are sudden and random, not constant like my toes.


When you say twitch, do you see movement? That is not a WED/RLS thing. We move because of the HORRID sensation and STRONG URGE to move. It's as if our brain is telling us, YOU MUST MOVE, NOW! If we do not move, I've had my muscles move, as if my body was saying, OK, you didn't move when I told you to, so I'm moving for you. It's rare for WED to be only in toes. There is a disorder called Painful legs and moving toes....http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686882/ Check it out.

Twitches all over the body are also not consistent with WED. How do these feel to you? Neuropathy could account for painful sensations you may have. I do have these and I sort of twitch from the pain - feels like a bee sting to me. Other options are myoclonic twitches or fasciculations. Myoclonic twitches - think hiccup in your muscles.http://en.wikipedia.org/wiki/Myoclonus

Fasciculations are more like a rippling of the muscle. http://en.wikipedia.org/wiki/Benign_fas ... n_syndrome.

Ellephant wrote:Does anyone find that the RLS sensations in your legs sometimes cannot be or are not relieved by movement, only by intense stretching to the point that you're almost pulling your legs out of the joints?
One of the biggest hangups we're having with my diagnosis is that more often than not, movement doesn't help at all. My symptoms are actually even more intolerable when I'm walking slowly or at a moderate pace than when I'm standing still. Does this happen to anyone else? Most of the time the only thing that helps is if I walk stiff-legged, without bending my knees at all so that all the muscles are being pulled and stretched and exerted. Doing really heavy weight-bearing exercises like walking up a massive incline or running up flights of stairs also helps. On the other side, I have taken note of the fact that I am constantly moving my feet around, and have been doing this in bed for many years but just assumed it was a nervous habit like when people bounce their leg up and down. But that one thing aside, basically, the doctors are having a huge issue with the fact that movement in general doesn't seem to relieve a lot of my symptoms. When I have them at night and they are preventing me from sleeping, if I get up and walk around and pace, it does nothing to help.


Movement always helps. It may require that I walk fast, but it always helps. Stretching helps, too, but it's just a different way to getting it to stop. If they are worse when you are walking, I'd definitely question this diagnosis.

Ellephant wrote:Does anyone else only feel as if the unpleasant sensations are coming from deep inside the leg, as opposed to towards the surface?
My doctors are hooked on the fact that most RLS patients describe their symptoms as, at least some of the time, something crawling on their skin. I have never felt that before in my life, except when something is actually crawling on my skin. What I feel is built up energy combined with unwarrantedly sore, achey muscles deep inside my legs. I do sometimes get a tingly numb sensation that feels more towards the surface, but that doesn't bother me nearly as much, doesn't come with an urge to move/pent up energy, and still doesn't feel like there's anything crawling on my skin.


I actually don't call it crawling ON my skin, rather in my muscles. So, for me, it is deeper.

Ellephant wrote:I know there's no "standard" for RLS symptoms, so I'm trying to get a feel for just how "atypical" these things are.
Thanks!


I'd say that, combined, several of these are atypical.

Have you tried writing to Dr Buchfuhrer? If you provided what you did above, my guess is that he'd be able to guide you a bit more. His email is somno@verizon.net. He's a WED specialist who happens to answer patient emails, bless him. Or, try this neurology site where a neuro will answer a question: http://www.justanswer.com/neurology/6p8 ... ttent.html
Ann - Take what you need, leave the rest

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aveerik
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Re: Atypical Symptoms? (some newb questions)

Post by aveerik »

My symptoms don't seem to get better with movement, when having bad symptoms I have to move but even moving doesn't make me feel any better. It is like when you get the urge to stretch and yawn, you feel the urge, you yawn while stretching, your done. But with me I am not done just because I moved.
I have never had a crawling feeling on my skin, it is always an intra-muscular anxious feeling. Maybe the doctors assume because we describe it as a "crawling" feeling they think it is like the meth heads feel while tweaking on meth? I guess I always assumed it was in the muscle feeling for most of us.
My symptoms are usually bad between 9pm and 7am.
Whatever your diagnosis is good luck with figuring it out and getting some relief.

Ellephant
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Re: Atypical Symptoms? (some newb questions)

Post by Ellephant »

ViewsAskew wrote:
When you say twitch, do you see movement? That is not a WED/RLS thing. We move because of the HORRID sensation and STRONG URGE to move. It's as if our brain is telling us, YOU MUST MOVE, NOW! If we do not move, I've had my muscles move, as if my body was saying, OK, you didn't move when I told you to, so I'm moving for you. It's rare for WED to be only in toes. There is a disorder called Painful legs and moving toes....http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686882/ Check it out.

Twitches all over the body are also not consistent with WED. How do these feel to you? Neuropathy could account for painful sensations you may have. I do have these and I sort of twitch from the pain - feels like a bee sting to me. Other options are myoclonic twitches or fasciculations. Myoclonic twitches - think hiccup in your muscles.http://en.wikipedia.org/wiki/Myoclonus

Fasciculations are more like a rippling of the muscle. http://en.wikipedia.org/wiki/Benign_fas ... n_syndrome.


I actually would describe a lot of my twitches as responses to me being too tired to give into the urge to move. If I'm too tired to physically move the muscles on my own, they twitch. Whenever I try to ignore the RLS-esque feeling is when the twitches become most severe. Nothing about them is painful. I was also tested for neuropathy (and everything else ever) and all tests came back negative. I do see movement, I sit there watching my toes dance. The only weird thing is that the twitching still occurs, but to a much lesser degree, when that urge to move is absent. Additionally, the twitches in other parts of my body can't possibly be in response to an urge to move because they often include my abdominal muscles and back muscles, which are not things that I can really voluntarily move even if I wanted to. I read the wiki articles and it doesn't really seem like my twitches fit either category very well. I don't have any twitches involving facial muscles, and sometimes it's one sudden twitch and other times it's more rhythmic and continues for like 20 seconds. Sometimes it will be near a joint and result in my foot or leg abruptly jolting, but sometimes it's in my calf muscle or abdominals, so I can feel it twitching but there isn't an actual limb movement to observe. I actually have already emailed Doctor B, and he said it sounds like RLS, which I believe, but the fact that ALL of my other doctors are skeptical makes me a bit skeptical (and hopeful?). I would love to hear if anyone else with RLS has any twitches that involve their back, abdominal muscles, hips, or shoulders, since I know that my legs and toes could fit with RLS, but the rest seems odd, as you pointed out.

Another thing is that alcohol and medicinal marijuana make the twitching SUBSTANTIALLY worse. I do not know why, or if this is significant. I kind of assume it's because when I lose some degree of conscious control, the motor signals from my brain are not being filtered or inhibited as much as they would be if I were fully conscious and not under the influence, or as relaxed.


EDIT: I just did a forum search, and it seems that user SquirmingSusan also has these symptoms. Sigh.

ViewsAskew
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Re: Atypical Symptoms? (some newb questions)

Post by ViewsAskew »

Alcohol bothering someone is consistent with WED/RLS.

There are several components of WED that are consistent, the urge to move is one. If there is no urge, it's not WED. Some people don't get the weird sensation - be it itchy, painful, wiggly or whatever - but they get the urge. Another that is consistent - movement makes it better. While I might stay anxious - part of it for many of us (an underlying anxiety associated with the NEED to make that URGE go away) - it gets better. And, if I'm distracted enough, it can even stop. I see aveerik saying moving doesn't really help - that is not typical. It's one of the diagnostic criteria. If moving doesn't help, a doctor would question if it's WED.

Another relatively key feature is distractability. If it's REALLY bad and something happens that captures your attention - say you get into a fight with a friend/loved one or you hear an ambulance and think it might be coming to your neighbor's house and you're staring out the window - we often find that we went several minutes without noticing any symptoms. As soon as we come back to our reality, the symptoms are back!

I'm certainly not a doctor, but I'd guess that you have more than one thing going on and that is why it's confusing. We had someone here who couldn't get her WED under control only to find out, many months later, that she had WED and a type of neuropathy. Maybe you have WED in your legs/feet/toes, but have something else happening, too.
Ann - Take what you need, leave the rest

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Ellephant
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Re: Atypical Symptoms? (some newb questions)

Post by Ellephant »

I bet I just need an exorcism. That's certainly what it looks like, at least haha.

But yeah. The distractability is 100% me. I'll probably be making an appointment at Johns Hopkins soon because this is getting ridiculous and EVERY nerve test and MRI comes back normal (and sleeping half an hour in 3 days is no fun either).

Polar Bear
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Re: Atypical Symptoms? (some newb questions)

Post by Polar Bear »

I would reckon that no matter how exhausted a sufferer of WED/RLS would be - the urge to move would override the exhaustion..... only my opinion.

At times my symptoms have been stubborn and I have walked and walked and walked, sometimes it has taken quite a long time to make a difference (a couple of hours) but eventually they settle a bit... it may be that they won't settle enough for me to sit down, but may settle enough that I can just walk, rather that walk and shake and stretch all at the same time.

I agree, my sensations come from within, certainly well under the surface of the skin.
Betty
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ViewsAskew
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Re: Atypical Symptoms? (some newb questions)

Post by ViewsAskew »

Polar Bear wrote:I would reckon that no matter how exhausted a sufferer of WED/RLS would be - the urge to move would override the exhaustion..... only my opinion.

At times my symptoms have been stubborn and I have walked and walked and walked, sometimes it has taken quite a long time to make a difference (a couple of hours) but eventually they settle a bit... it may be that they won't settle enough for me to sit down, but may settle enough that I can just walk, rather that walk and shake and stretch all at the same time.

I agree, my sensations come from within, certainly well under the surface of the skin.


When you are walking, though, are the sensations gone? I suppose I still have the urge to move, but it's more like it's just waiting for me to stop. If I stop, I'm screwed. As long as I move, it's at bay. It's not completely gone, but I can deal with it.
Ann - Take what you need, leave the rest

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Re: Atypical Symptoms? (some newb questions)

Post by Polar Bear »

When I am walking the sensations do not automatically disappear, they can be there for some time while I walk, sometimes I walk 15 mins, sometimes a half hour, you never can tell. Sometimes I take a codeine 30/500 and walk until it (hopefully) makes a difference.

Sometimes I've walked for a time and think..... aghhhh..... that's better, only to be in bed/seated for 5 minutes and it's as if the symptoms jump up and shout "Boo"... gotcha !
Seems there is the need to walk for a time beyond when they seem settled... just to be sure, to be sure.
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aveerik
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Re: Atypical Symptoms? (some newb questions)

Post by aveerik »

When I said I get no relief when I move I mean that I move, and yes the anxious urge to move is temporarily gone but as soon as I stop it is there again. So yes I get relief but not enough to be able to stop moving. I don't consider it real relief until I can stop moving and rest.

As far as twitching goes I sometimes get big, almost electrical like twitches in my whole body. Usually right as I am falling asleep. I never get these twitches when my wed symptoms are active. It seems I have to be somewhat relaxed to twitch. Sometimes they are just in a part of my body and it could be any part, from toes to neck.

ViewsAskew
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Re: Atypical Symptoms? (some newb questions)

Post by ViewsAskew »

aveerik wrote:When I said I get no relief when I move I mean that I move, and yes the anxious urge to move is temporarily gone but as soon as I stop it is there again. So yes I get relief but not enough to be able to stop moving. I don't consider it real relief until I can stop moving and rest.

As far as twitching goes I sometimes get big, almost electrical like twitches in my whole body. Usually right as I am falling asleep. I never get these twitches when my wed symptoms are active. It seems I have to be somewhat relaxed to twitch. Sometimes they are just in a part of my body and it could be any part, from toes to neck.


Those are most likely myoclonic jerks. They happen to many people (without WED, with WED) when falling asleep. Interestingly, mine are much stronger when I take opioids.
Ann - Take what you need, leave the rest

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Ellephant
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Re: Atypical Symptoms? (some newb questions)

Post by Ellephant »

aveerik wrote:
As far as twitching goes I sometimes get big, almost electrical like twitches in my whole body. Usually right as I am falling asleep. I never get these twitches when my wed symptoms are active. It seems I have to be somewhat relaxed to twitch. Sometimes they are just in a part of my body and it could be any part, from toes to neck.


This is literally exactly what I was talking about - they look and feel like electrical twitches all over my entire body. When the RLS sensations dissipate is when the twitching becomes most severe; it almost seems like they trade off. And the more physically relaxed I am the worse the twitching becomes too. It doesn't always happen to me when falling asleep though, but it does happen every day. The second I un-tense or relax any of my muscles is when they all go nuts without fail. Many times this happens when I'm not relaxed, but it ALWAYS happens when I am. Like when the RLS sensations take a break and I CAN actually relax, the twitching takes over. Sometimes a premeditated voluntary movement can trigger a twitch as well, like if I'm going to reach for a coffee mug sometimes the arm or hand muscles that I am already moving will twitch or jolt and knock into the mug.

ViewsAskew
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Re: Atypical Symptoms? (some newb questions)

Post by ViewsAskew »

Ellephant wrote:
aveerik wrote:
As far as twitching goes I sometimes get big, almost electrical like twitches in my whole body. Usually right as I am falling asleep. I never get these twitches when my wed symptoms are active. It seems I have to be somewhat relaxed to twitch. Sometimes they are just in a part of my body and it could be any part, from toes to neck.


This is literally exactly what I was talking about - they look and feel like electrical twitches all over my entire body. When the RLS sensations dissipate is when the twitching becomes most severe; it almost seems like they trade off. And the more physically relaxed I am the worse the twitching becomes too. It doesn't always happen to me when falling asleep though, but it does happen every day. The second I un-tense or relax any of my muscles is when they all go nuts without fail. Many times this happens when I'm not relaxed, but it ALWAYS happens when I am. Like when the RLS sensations take a break and I CAN actually relax, the twitching takes over. Sometimes a premeditated voluntary movement can trigger a twitch as well, like if I'm going to reach for a coffee mug sometimes the arm or hand muscles that I am already moving will twitch or jolt and knock into the mug.


That's why I suggested myoclonus earlier. Myoclonic jerks only happen when falling asleep, as far as I know, but there are other types of myoclonic movements. These may or may not be serious. It's the only think I know of that is similar to what you're describing.
Ann - Take what you need, leave the rest

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Ellephant
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Re: Atypical Symptoms? (some newb questions)

Post by Ellephant »

Okay, serious question. Could this be super early signs of Parkinson's? Would that have shown up in my brain MRIs? I'm getting mixed results from the internet in terms of how Parkinson's is diagnosed. I assume this has nothing to do with Parkinson's since many members here have very similar symptoms, but I'm unsure of where to draw the line of possibility.

ViewsAskew
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Re: Atypical Symptoms? (some newb questions)

Post by ViewsAskew »

Ellephant wrote:Okay, serious question. Could this be super early signs of Parkinson's? Would that have shown up in my brain MRIs? I'm getting mixed results from the internet in terms of how Parkinson's is diagnosed. I assume this has nothing to do with Parkinson's since many members here have very similar symptoms, but I'm unsure of where to draw the line of possibility.


I honestly have no idea. I just know that I'd want to make sure, because this is truly not part of WED. I also don't think there's that much variation in other responses - it's hard to communicate exactly about this. For example, when I read people's responses, I hear that movement may not eliminate it all the symptoms - you might have to move for a LONG time to get it to stop completely, but without moving, you'd be crazy - moving makes you it so that you can continue to exist without going absolutely crazy. So moving does help - it's a matter of degrees and of how it helps. And, I've never read anywhere, or had people here say, that they have these kinds of jerks except at sleep time. In this thread, Aveerik said he/she has these sensations, but that they occurred when falling asleep. Many people, over the years, have said they have them, too, but again, only when falling asleep.

What about this option - if you are very tired, you could be going into Stage 1 sleep when you are at rest - I've been there many times. So, these jerks still could be typical myoclonic jerks that happen right before sleep, but you don't think of it as bedtime because you're awake and you weren't trying to go to sleep. I don't know if you must be a bit farther into Stage 1 to experience them or if you can simply be falling asleep while standing - my guess is that you can.
Ann - Take what you need, leave the rest

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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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