Severity of symptoms

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
still sleepy
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Severity of symptoms

Postby still sleepy » Thu Jun 05, 2008 6:06 pm

As a relative newby, I need some information--are these symptoms RLS or am I using RLS as an excuse or do I need counseling therapy? Some days I am so exhausted and emotionally on the ragged edge--the most minor infraction by my kids will set me off, yelling and screaming "I can't take it any longer!"--and I cannot stop myself--there is no filter. It almost cost me my marriage a couple of months ago--it's getting that serious. I also have days when my brain feels "foggy," when I can't find the right word to complete a sentence, and am a scary driver. It's a good thing we don't live in California because I'd be dead by now from road rage--having accidentally irritated the wrong someone--probably some other poor soul with undiagnosed RLS. :lol:

My polysomnogram indicated a periodic limb movement/arousal index of 30, however, the current neurologist I'm seeing does not believe it is reliable. He wants me to re-regulate my sleep cycle first over the next two weeks before he goes any further (in other words, I'm assuming he wants me to change my sleep hygiene, probably so he can establish a baseline, however, it's day 3 and my cycle's a mess.) He doesn't want me napping, however, yesterday I was so exhausted I had to cat nap just to find the energy to make dinner.

Three weeks ago, my shoulder started twitching in the morning. At times if I take a nap, my legs are twitching so much so that I can't rest even though I'm exhausted.

What I need to know is this--where does my RLS fall on the continuum of severity? How severe (or not) are these symptoms?

Is my problem that I don't exercise sufficiently? In other words, what role does exercise and excess weight play in the severity of RLS????

Do I need to find a different neurologist?????

KBear
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Postby KBear » Thu Jun 05, 2008 8:50 pm

Hmm . . . tough questions and I'm sure you will get a boat load of responses. I measure severity of symptoms by how much it impacts my life. 24/7 RLS is considered the worst but even if you only have RLS 8 hours a day if that 8 hours was the only time you had to sleep the impact to your quality of life would still be significant.

The rage could be related to lack of sleep or it could be something else, only you can know if there are other stress factors in your life. Counseling may help if there are other issues you need to address, or maybe just talk to a friend.

Being overweight is not good for your overall health (I struggle with this too) and lack of sleep can contribute to weight gain, but your RLS may not improve just becaue you lose weight. This doesn't mean we should give up, we should all strive to be as healthy as we can be. many of the unhealthy diet choices that make us gain weight can make RLS worse too (sugar, alcohol, and artificial sweetners and other chemical ingredients)

Foggy? yeah been there, I have trouble remembering nouns when I'm over tired "can you hand me that thing over there, you know that thing, that one, it's you know, it goes like this and it's . . . " sound familiar?

Exercise should be done in moderation start with walking everyday just a little bit and increase as you are able. Too much exercise can cause trouble too. I always advise people to take good care of their overall heath, if you aren't sleeping, and your diet is poor, and you don't exercise you have three things working against you. It is far better to eat well and exercise regularly so you have the strength to deal with the lack of sleep.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

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Postby ViewsAskew » Thu Jun 05, 2008 11:37 pm

The noun things...too funny. It's like I had a stroke!

Like both of you, I am foggy A LOT. The worse the sleep, the foggier. I also have found that I used to be able to go without good sleep for a very long time before I paid an extreme price. But, a few years ago that changed. Maybe it's because of the chronic deficit. But, now, if I have a good night, I am OK the next day. If I have ten good nights, I'm OK each of the following days. But, as soon as I have one bad night, the level of my impairment the following day is as bad as when I used to go months. It's like there is no grace period anymore.

Like Kathy, I don't know how to assess it - only you can. How does it impact you? How much do you struggle? It sounds like you have PLM = periodic limb movement - along with the RLS. And this prevents that deep sleep from happening. TO me, this is almost harder to deal with than RLS because you THINK you are sleeping but you feel so lousy. At least I know why I feel lousy when the RLS keeps me up all night.

Maybe it's a good thing to find a new neuro and get a second opinion. I am not thrilled by this one's response to you. You need help and he/she doesn't sound like he/she is hearing you and how this is affecting you.

Per the rage, I know enough to be dangerous here, so take that with a grain of salt. I am not an expert by any stretch. I do know that rage, anger, etc. are related to chemical problems in the brain and imbalances. These involve dopamine, GABA, serotonin, etc. Well, RLS involves dopamine and the imbalance in one can throw off others, too. So, it may simply be an inbalance between them.

REgarding what to do, that's harder! An anti-depressant (AD) might help this chemical problem, but it could worsen RLS. It has to be carefully monitored and you might have to try several. Buproprion is a good one to start with - it tends not to worsen RLS. BUt, if might not help, either, if the chemistry needs changing in another way.

Again, just me rambling about stuff I've read about, but certainly am not well-versed in. If it sparks something, cool. Some research into this may net you more info.

Welcome, still sleepy. I hope you find what you need.
Ann - Take what you need, leave the rest

Managing Your RLS

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ctravel12
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Postby ctravel12 » Fri Jun 06, 2008 2:33 am

Hi still sleepy and welcome to this board. I am sorry for what you are going through. Being sleep deprived is miserable and we all have been down that road.

Have you ever had a sleep study? It does diagnose PLMD (periodic limb movement disorder) which Ann had mentioned and can cause disturbed sleep.

Go to the forum New to RLS (there is a sticky post called (Managing RLS) as there is an excellent article from Mayo Clinic Algorithm (in fact KBear) has the link on the bottom of her page. Click on that and please read it and print it out and give a copy to your dr.

Have you had your ferritin level check (iron defiency) if it is 50 or below that is too low. When you go for b/w you have to request it as the normal b/w does not include that.

Please keep us posted on how you are doing.

You received some good advise and like Kbear said exercise is good in moderation. I myself enjoy water aerobics and do it in the am; however I do not have any children so if you want to do this you may want to do this when your spouse is home.

Again, welcome and hope that this has been of some help to you.
Charlene
Taking one day at a time

ViewsAskew
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Postby ViewsAskew » Fri Jun 06, 2008 4:37 am

Oh, I just read Charlene's response and realized I'd forgotten to mention exercise and weight.

Rant starting:

One of the supposed risk factors for RLS is overwieght. Ummm, this annoys me no end. There is NO evidence at all the being overweight causes RLS. What the study found it that a larger percentage of RLSers happened to be overwieght than the normal population.

But, recently, they've found that sleep disturbances screw with your blood sugar and are associated with weight gain. So, the way I see it, the relationship is that the sleep disorder comes first, not the weight. Of course, you could be overwieght and get a sleep disorder, but my point is simply that there isn't any cuasality.

I was average wieght when RLS first raised its ugly head. My brother, my uncle and my sister were all (and the men still are) at average weight when RLS struck. So was my mom. Now, mom, grandma, sister and I all managed to put on more weight than we need, but it didn't change the RLS.

End weight rant.

Per exercise, it's tricky. Most of us find that too much heavy activity that we are not used to will make our RLS worse. Many of us also find that no activity makes the RLS worse. IT's a happy medium we search for. Now that my RLS is every day anyway, it doesn't matter anymore.

Oops, being kicked of computer by DH who is doing something to it...
Ann - Take what you need, leave the rest



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SquirmingSusan
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Re: Severity of symptoms

Postby SquirmingSusan » Fri Jun 06, 2008 5:44 am

still sleepy wrote:As a relative newby, I need some information--are these symptoms RLS or am I using RLS as an excuse or do I need counseling therapy? Some days I am so exhausted and emotionally on the ragged edge--the most minor infraction by my kids will set me off, yelling and screaming "I can't take it any longer!"--and I cannot stop myself--there is no filter.


I kept reading this and trying to figure out how to address all the questions, and finally I realized that there was no way I could remember them all without copying your post. Sheesh, talk about foggy.

It's really hard to tell if the RLS is causing you to be irritable or if it's something else. I know that personally I tend toward being crabby and agitated all on my own, and that when I'm more tired I can be less irritable. I guess I get too tired to crab at people, LOL. I totally know what you mean when you talk about having "no filter." But for me it's a symptom of my depression which I've had for much longer than I've had severe RLS.

So really, you need to decide if it's the RLS that's making you edgy. And then decide what you want to do about it.


My polysomnogram indicated a periodic limb movement/arousal index of 30, however, the current neurologist I'm seeing does not believe it is reliable. He wants me to re-regulate my sleep cycle first over the next two weeks before he goes any further (in other words, I'm assuming he wants me to change my sleep hygiene, probably so he can establish a baseline, however, it's day 3 and my cycle's a mess.) He doesn't want me napping, however, yesterday I was so exhausted I had to cat nap just to find the energy to make dinner.


Honestly I don't know how any doctor can tell people to not take a nap when they're exhausted. Not unless they're going to prescribe something to keep me awake! Oh sure, doctor, let me just fix my circadian rhythm on my own so that you have something to work with. Huh?

Three weeks ago, my shoulder started twitching in the morning. At times if I take a nap, my legs are twitching so much so that I can't rest even though I'm exhausted.

What I need to know is this--where does my RLS fall on the continuum of severity? How severe (or not) are these symptoms?


It sounds severe to me if you're exhausted, but the RLS and PLMD keeps you from sleeping.

Is my problem that I don't exercise sufficiently? In other words, what role does exercise and excess weight play in the severity of RLS????


I've never heard that weight has any correlation to RLS. It has to do with dopamine utilization in the brain, why would it have anything to do with weight? Sometimes I think that blaming weight is just an easy answer to a difficult question. Some people just have issues with people who carry around excess pounds and will blame everything on the weight. My mother is like that. She loathes people who are heavy. Just because they're heavy.

Exercise is something that everyone needs to figure out for herself. Some people can't exercise close to bedtime. I, on the other hand, sleep much better when I go for a long walk late at night before I try to sleep.

Do I need to find a different neurologist?????


That's totally up to you. Just know that it's all a huge puzzle to figure out how to treat this condition, and it helps to have a doctor who is up to the challenge.

I hope this made some sense. Please keep us posted on how you're feeling.
Susan, squirming Image

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still sleepy
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Severity of Symptoms

Postby still sleepy » Sat Jun 07, 2008 12:20 am

Cannot thank you all enough for the input. It has given me the information I need at this point to get to where I need to go in this journey of living with RLS. I tried posting a much longer response earlier today, but I must have done something wrong because I don't see it anywhere.

Just wanted you to know that you can relax--the outbursts were not rage, more an episode of bad PMS and were temporary. Sometimes it's difficult to gage how something you type is going to come across online. My family is not in danger of losing their lives, my marriage is intact.

That said, however, because of your input, confirming my suspicions that my symptoms fall on the more extreme end of the spectrum than mild, my husband and I are in dialog about certain changes we are going to have to make to our lives and our future plans to account for this unexpected diagnosis.

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Postby ViewsAskew » Sat Jun 07, 2008 12:50 am

I'm not an expert here, either, just can say that in my life, I've learned that effective communication - and working it out together - is very important. I don't know if it's required for all couples, but in my life it sure made a huge difference in one relationship as compared to another. The difference is amazing....and the relationship all the stronger because of it.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

cornelia

Postby cornelia » Sat Jun 07, 2008 10:22 am

On www.rls.org there is a RLS severity test somewhere. If you answer the questions you get points and after finishing this questionnaire you will know how severe your RLS is. Of course you know that yourself, but the outcome of this questionnaire can serve as proof to other people how bad your RLS is.

Corrie


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