New here and just really friggen tired. :[

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MoonlapseVertigo
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New here and just really friggen tired. :[

Post by MoonlapseVertigo »

Name’s Gianna. I’m 18, from Jersey, and I’ve just recently been diagnosed with RLS, PLMS, and severe sleep onset insomnia (probably due to the two afore mentioned….) I’ve been tired and fatigued daily for… well, I can’t really remember the last time I was fully awake. Maybe when I was 7? :p Anyway, I’ve been put on Requip as well as iron supplements, but they’re not doing anything. I still don’t feel refreshed during the day, and even now if I try to go to sleep by 11 or 12, I lie awake until 2 or 3 (sometimes later). And having to get up at 6:30 everyday leaves me with 4-5 hrs. of restless, disrupted sleep per night. I’m starting college in the fall and don’t really know how I’m going to continue coping with all this as I hear it all only gets worse. I just kind of needed to rant as I have no one to talk to about this, and I feel really alone. I'm just so tired of people saying, "just go to bed earlier - you'll get more sleep" or "don't watch TV before bed" or "don't drink caffeine".... like we've never tried or thought of those things. And i try so hard not to get upset when people say that they're tired and then get agitated when i don't sympathize them at all... It also doesn’t help that, no offense to us, rls has a silly name... and that most people don’t even think it’s real… This just really sucks.

And on a side note, just because it has recently occurred to me, I can’t remember the last time I had/remembered a dream… anyone know why this is? Lack of REM maybe? Anyway, it’s nice to finally be part of a community where I wont be “looked at” funny for all my afore mentioned issues…

ed2008
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Post by ed2008 »

moon,

yes, you are amongst those who suffer. i would say to you use everything on this site in your search for answers. start by finding a physician who UNDERSTANDS rls. any information you gleen from here will not help unless your physician is willing to help, NOT HINDER, your treatment.

post when you need to vent, or have a question. I think you will find many of the answers are here if you search. if not, there are so many knowledgeable people here who will answer or link you to the answer. It's a great group here, opinions will differ but cordially.

keep your chin up kemosabe

Ed

Polar Bear
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Post by Polar Bear »

Hi MLV
sorry you're here out of necessity, but welcome.

I have found the Mayo Algorithm invaluable, print out a copy and take it to your doc and see if he will work with you using it. There is a link at the bottom of kbear's posts. Otherwise go to rlshelp.org and you will find it there.

Good luck.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Post by ViewsAskew »

Glad you found the site, Gianna; hope you find what you need here.

Per the dreams, you nailed it. We tend not to get enough of the later stages of sleep - we get a lot of 1 and 2, but not much of 3-5. I tend to get a lot of REM and no 3 and 4 (restorative). Some people get some 3 and 4, but no 5 (REM).

You sound more frustrated than in need of knowledge, but being a knowledge-hound myself, I can't help but recommend that you start here by reading the sticky posts, particularly in the new to RLS, non-pharma and pharma sections.
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.

SquirmingSusan
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Post by SquirmingSusan »

Hi Gianna. Welcome to the forum, but sorry you have this condition. I can only echo what everyone else has said. Read everything you can, and find a doctor who is willing to help and to learn about the condition. As for other people not "getting it" you could try telling them that you have a neurological and movement disorder called Wittmaack-Eckbom Syndrome. As for the unwanted advice, well, there really is no good way of dealing with it. Probably best to just thank people for their concern and and then ignore what they say. Or ask them where they got their medical degree.

My dh today came back from the dump where he takes our trash and told me that the women who work there told him to tell me to take unsweetened gelatin and it would cure my RLS. Oh sure, I'm right on that one. :roll:

I wish you the best with it all, and hope you can get some competent medical care soon.
Susan

Aiken
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Post by Aiken »

Understanding something you haven't experienced, especially something that even those who've experienced it cannot describe accurately, is difficult. Before my full onset of RLS, I have to admit I had little respect for the people who claimed to have chronic fatigue syndrome or fibromyalgia. They seemed like silly diseases that people could easily be making up to get out of work. Now that I have something of a similar nature, I'm more inclined to believe that they're not just making up some big cooperative lie. I'm sure some people do abuse the concept to get out of work, but I've come to believe that most are not doing that. It took an experience of my own to get there, though, and I consider myself more insightful than most, so that's saying something. It's just part of just being human. Don't be too hard on people for being wary of the idea, or reticent to believe you--being cautious is an instinct we're all born with, and have to learn to set aside, same as wanting to hurt someone who angers us. We like to think we're free-thinking individuals, but there's a lot that's programmed into us, and it's hard work to deprogram it. Not many people do it without being prompted, and in your case, you're probably going to find yourself being the prompt. Sorry, it's just how things are. It's easier to accept it and figure out how to deal with it than to rail against it.

Anyway, how long have you been taking the iron, and how much? It can take a while to build up to proper levels. Also, what IS your ferritin level?
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Sojourner
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Post by Sojourner »

MV, Another welcome. I think if you are able to follow through on some of the above suggestions you can and will get better. Be sure to pay attention to some of the life style changes i.e foods, medications, etc. that will be mentioned in the stickies. You're quite young, so forgive this presumption--not limited to the young, but alcohol tends to worsen rls. As far as college, you may have to do your best to get late afternoon and evening classes, particularly if you find you are able to get to sleep in the wee hours. May not help the fatigue but may be something to think about your 1st semester and until things can get sorted out. What college?

Best of luck.

M.
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ViewsAskew
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Post by ViewsAskew »

Oh, yeah....anyway you can get afternoon classes? I was sooooo lucky and had only one 8 AM class. I often chose Tue/Thurs classes as they seemed to be in the afternoon. The later you can make the classes, the better you can sleep as we tend to sleep better after 3 in the morning or so (generally speaking).
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.

elanorbreton
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Re: New here and just really friggen tired. :[

Post by elanorbreton »

MoonlapseVertigo wrote: I'm just so tired of people saying, "just go to bed earlier - you'll get more sleep" or "don't watch TV before bed" or "don't drink caffeine".... like we've never tried or thought of those things. And i try so hard not to get upset when people say that they're tired and then get agitated when i don't sympathize them at all... It also doesn’t help that, no offense to us, rls has a silly name... and that most people don’t even think it’s real… This just really sucks.


Oh, Gianna, I can so sympathise with you. I'm newly diagnosed too and haven't yet come to terms with dealing with this condition (if you ever do). Every time I hear someone say they're tired, I rant inside my head that they don't know the meaning of the word... and then we have to suffer the stupid RLS name. I've only told a few people so far and will not be making the same mistake anymore - telling people that it's called Restless Leg Syndrome seems to provoke huge laughter, they think it's just a big joke. Two weeks later, I'm still seething about my own mother telling me to put both of my legs into one pyjama leg to stop myself from moving about.

ViewsAskew
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Post by ViewsAskew »

Elanor, I couldn't help but laugh at what your mum said...but I'd have wanted to kill her, too!

Someone else said this and it's often what I do, too. I say I have a neurological movement disorder that prevents me from sleeping well. If they press, I say it's called PLM and I explain how the twitching keeps me from getting good sleep. If I didn't have PLM, I'd say I had a neurological movement disorder....then stop. If they pressed, I'd use Susan's line and say it's called Wittmaak-Ekbom syndrome. I'd explain about iron insufficiency and inability to regulate dopamine...and never use RLS or restless legs.

Cheating? Maybe :wink:
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.

Aiken
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Post by Aiken »

ViewsAskew wrote:I was sooooo lucky and had only one 8 AM class.

I failed both of the classes I took at 8:30am in college. It was inevitable, as at some point I simply stopped going to them.

I never took any other classes that early, always opting for a later time or another class entirely, for obvious reasons.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Momo
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Post by Momo »

no offense to us, rls has a silly name... and that most people don’t even think it’s real… This just really sucks

I totally know what you mean. i have a really hard time explaining it to teachers and qudience counselors at my school, they always resond to it with 'oh thats like kids shake there legs?!!?' and they they act like its a joke, :evil: and the thing is its not just in my legs, and they arent "restless'' they HURT, they ache, and the only reason we move them is to get relief!!!!

......ok, that rant was more for my benefit....

Never go to a doctor whose office plants have died.

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