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A Newbie!!! and searching for answers related to RLS

Posted: Mon Jul 20, 2009 7:35 am
by joyce_l
I am Joyce from singapore and am a young adult.

Just today, I got diagnose with restless legs Syndrome. I got great difficulty to sit still for long coz sometimes i feel something moving on my arms and every midnight, my legs will have the tendercy to move and to jerk uncontrollably. Well, the neutrologists that I saw didnt say much about it. Just took blood test to find out causes of it. Well, I am not taking any medicine coz i prefer to find other alternative but is there other alternatives?

I would like to ask does RLS causes attention defecit disorder(ADD). I cannot keep my attention for long in lessons unless it's hands-on lessons.

And does it affect lateness? I dunno why am i always late especially in the morning..i tried to be early, but only can maintained for 2 weeks.

Looking forward to all your replies.
Thank you very much!

Posted: Mon Jul 20, 2009 2:33 pm
by Neco
Natural treatments for RLS are a very unclear subject.. The reason for this is, no one really knows what causes it and there is no known treatment with a 100% success rate on the general population (except for opiates).

A lot of people have ideas about supplements, or cut this out of your diet, add that to your diet, etc.. But no non-pharmacetuical method for treating RLS is guaranteed and what works for one person may not work for another.

RLS does not cause ADD/ADHD, however it can be misdiagnosed as ADD/ADHD by an inexperienced doctor, although this typically only happens in children from what I understand. As we all assume a child who won't sit still is just hyper. Are you a teenager? (Teenagers are also called young adults in the USA). There is also the possibility you have both RLS and ADD/ADHD - I was diagnosed with ADHD when I was pretty young, I think 11 or 12 years old.. Although I don't have a lot of problems with it and I don't take medication for it anymore for personal reasons. I do sometimes find it hard to concentrate on a single task for long though, but it also depends if its a mental or physical task too.

As for lateness.. Well one of the biggest impacts of RLS, is sleep deprivation. If you aren't sleeping, or aren't sleeping well, then you will be more tired than if you had achieved a deep state of sleep. Many people with RLS also have Periodic Limb Movement Disorder (PLMD) - however RLS does not cause PLMD, and PLMD does not cause RLS, sometimes they just appear together for unknown reasons.

The best chance for getting successful treatment of RLS, is going to either be changing your lifestyle to try and adapt and minimize your symptoms (excersize frequently, change your diet, keep a good iron intake) otherwise you will have to take medications.

The two medications approved for RLS are Requip and Mirapex, however they don't work for everyone, and the downside is if they don't work for you they will likely make it worse.

Although not approved, many other medications are used off-label to treat RLS.. Benzodiazepines, anti-seizure medications, and as I mentioned before, opiates (narcotic painkillers). Sometimes people find success with a single group, or with a combination.

It comes down to a personal choice you have to make about taking medication, and what you're comfortable with (and what you can actually convince a doctor to try prescribing). For most people it comes down to either take a couple pills every day, or live in constant annoyance (or in sever cases, agony) from their symptoms.

In my signature is a link for The Mayo Clinic Algorithm. You should download it and read it. You may want to take it to your next doctors appoitment as well, as it is intended for physicians to help treat RLS patients. The Mayo Clinic is a very respected establishment in the USA and many people often go there when they have nowhere else to go that can help them find out things.

One thing you should do is have your Ferritin (iron) levels checked. Iron Deficiency can also cause RLS in some people. Although many with RLS do not suffer from it.

Posted: Mon Jul 20, 2009 10:25 pm
by mackjergens
Be sure to read all the rls info you can find, you need to know the meds that can make rls worse, such as benedryl and other antihistimines, also antidepressants, there are even some foods, like ice cream that can affect rls for some rlser's

Cant say there is anything other than meds to help. But some people do find help without meds. For me after having it all my life and never finding anything to help I just take my pain meds , getting sleep is wonderful!
many other web sites with great info on rls. Read as much as you can, educate yourself, because most drs know very little about rls,

The Dr telling you that the jerking is rls, is wrong its called PLMD or periodic limb movement disorder. The feeling of something moving on arms/legs would be rls. RLS is when you simply can not stay in bed due to the uncomfortable feelings in legs, you just have to get up and move. the jerking movements are PLMD. some of us have both.

Posted: Tue Jul 21, 2009 5:23 am
by joyce_l
Thank you so much for the information. I will gor read up. :)

Oh, i am 21 years old this year so should be considered as young adult in USA not teenager.

Well, for my case, i don't need to get up and move during sleep.

So in this case, does it likely to mean that i have no RLS but only PLMD?

But I will keep moving both of my legs to make it better. But it can feel better when moving my legs only for a short while. So i normally toss around. My mum observed that i also have the tendency to raise up both of my legs up high during sleep, and then put it down hard on my bed, then raise it up high again and so on, and forth(which i am unaware of it happening)

About diet and exercise, I love sports so i do exercise not daily but often. And have a healthy diet too, so might be lack of iron(which i just went for blood test) yesterday adviced by the doctor. so if it is lack of iron, i just have to eat foods with iron. but if it is not the cause of diet, then what would other causes be? or is there like you mentioned no identify causes at all? it just happened to some people?

I am not sure if I have ADD but i just cannot focus on a task for long period of time unless it is something hands on that i can move around or interest me then my attention span can be long.

And can pple suffering from RLS lead to depression?

Posted: Tue Jul 21, 2009 5:26 am
by joyce_l
and wondering if people with RLS has STM(short term memory)
I have pretty short term memory nowadays or could it be part and parcel of symptoms when one does not have enough sleep or full sleep?

Posted: Tue Jul 21, 2009 9:35 am
by ViewsAskew
Absolutely. Memory is partially formed during sleep (so is learning). When you don't get enough sleep, your cognitive function declines.

Posted: Tue Jul 21, 2009 2:04 pm
by Neco
Unfortunately some of us do just have RLS for no seeming reason at all..

When I had my ferritin test, the results came back around 102, which is very normal, although some people with RLS have severely low iron, and getting it up can improve their RLS somewhat, if not eliminate it.

It's all trial and error..

Regarding your movements in bed.. Being compelled to move your legs, even if you're not getting out of bed, is a classic symptom of RLS when it is the moving of your legs that makes your symptoms disappear.

Regarding what you unknowingly do in your sleep, that is likely some kind of PLMD and can be diagnosed with a sleep study. Treatments for PLMD usually involve benzodiazepines, which in some cases also help RLS (but it will not relieve your symptoms while you are awake that I know of). Also some random people have commented that Ritalin and I think some other ADD/ADHD medications seemingly helped their RLS.

So perhaps getting any potential diagnosis' of PLMD / ADD/ADHD and if confirmed, any treatments given, might improve or at least help you sleep through your RLS more comfortably.

Be that as it may.. RLS is a progressive condition, and it will get worse as you age. So you may reach a point where you need to focus treating the RLS specifically with some kind of medication. The rate of progression is different for everyone.

In my case, I was diagnosed shortly after I turned 21, and within the span of a year I went from ocassionally needing Vicodin at night, to requiring round the clock doses to keep it under control. In my case that led to personal issues with addiction, but I got through it and now I take 15 or 20mg of Methadone in the mid morning hours and get 24 roughly 24 hours of relief. Many of us at this forum are actually not representative of the general RLS population also.. So what we do may be totally different from what you have to do..

Most of us are either on, or have failed Requip / Mirapex, and suffer from 24/7 RLS called Refractory RLS. So most of us are taking one or more controlled substance medications, but don't let that scare you into not getting treated. There are many good medications for you to try before you even have to think about tightly controlled meds and any personal concerns about becoming addicted to medication, etc (it is a common fear many with RLS seem to have)

Posted: Wed Jul 22, 2009 2:49 pm
by joyce_l
sign...i cannot accept that I got RLS or PLMD...why is this so? i really dunno
Now i fear of sleeping at night...

So how do your explain to your teacher(if u r studying) or boss(if u r working) that u have RLS? or do u keep a secret since it will be hard explaining to them?

I tried explaining to my mum and i get really frustrated because she tells me to wear socks at night so my legs wun move often? does it helps at all? And then she said cut down eating sweet stuff? does it concern?

Posted: Wed Jul 22, 2009 2:53 pm
by joyce_l
And any suggestions to help me? i cannot sit still for long if a activity doesnt interest me especially if it is those meeting that have to sit still for like 1 hr, 2 do i stay focus since after a short time, i feel restless, and wanna stand up and walk away?

Posted: Wed Jul 22, 2009 3:16 pm
by Neco
I'm sorry that I don't have any real advice for the meetings... Aside from trying to arrange an exception where you can take periodic breaks and go walk around for 5 or 10 m and then rejoin ?

As for how we tell people. We all deal with this very differently.. Some of us tell almost no one, while others are a little more open. It comes down to how we guage the reactions of people we tell, based on what we tell them.

For me, I generally will tell anyone I'm friendly with what I have and that I take Methadone because of it.. However if its someone more reserved I may say nothing, or if it needs to be explained, I will just tell them I have a neurological condition that leaves me with chronic pain. (which is not a far stretch from the truth.. I'm not in as much pain as others are, but RLS is neurological).

Posted: Wed Jul 22, 2009 5:28 pm
by Polar Bear
I don't keep it a secret. Just couldn't do it cos the symptoms of my 24/7 rls have me going 'walkabout' so much. The alternative to going walkabout would be me squirming/wriggling/jiggling and perhaps behaving as tho I had some sort of psychiatric condition (my own thoughts).

When I am working (office situation) sometimes I have to stand at my computer. My colleagues just accept it without difficulty.

I refer to it as a neurological movement disorder that can be felt by me but not 'seen' by others.

Can your doc provide you with a letter that allows you to stand at the back of the room during meetings, as necessary.

Posted: Thu Jul 23, 2009 9:42 am
by joyce_l
Yup I think i might ask for a letter soon. The doctor asked me too if i am working or not...right now no, anyway i ask for a letter soon.

Btw what do u mean by neurological condition?
does that mean the brain tells the legs to move thus we cannot control it?

Posted: Thu Jul 23, 2009 12:27 pm
by ViewsAskew
Joyce, yes that is what they mean by a neurological condition. In this case, they are not sure why it happens, but the brain is sending a signal that makes us feel that we MUST move. Some of us describe what that signal is in different terms. it might feel electrical, or like bugs inside your veins, it might be painful. Some of us don't really feel much, just that we MUST move.

RLS is first and foremost a movement disorder. Second, it's considered a sleep disorder because it keeps us from sleeping.

Posted: Fri Jul 24, 2009 12:34 pm
by joyce_l
is it something wrong with our brains? how come this happens?

Posted: Fri Jul 24, 2009 7:35 pm
by ViewsAskew
If you have time, you might enjoy reading the "sticky" posts in the New to RLS section. There are many links to articles and research studies that will explain it in detail.

The short answer is that they aren't completely sure. They know that some of our cells are shaped oddly which makes iron uptake problematic, and that the inability to uptake iron makes it hard to uptake dopamine correctly. They also think that we have a dopamine regulation problem - our brains take up a bunch of it early in the morning and then "forget" to get more until we've run out.

It's not a horrible thing, which is good. It doesn't appear to affect anything else in our brains. Just causes this odd RLS thing.