Not just legs!

[sugbrendas]

I think CRS is automatic when you have RLS
Here I go assuming everyone's like me!
Don't you all get in like a mind fog? Trouble with concentrating,forgetful?
Feel dizzy when you go into a sleep crisis?

Let me know you all.If this isn't normal I need to know.

Well last night was my last good nights sleep til after my sleep study.Off all of my goodies!

[becat]

Hi everyone.......Jan I had to look up CRS disorder...." Can't Remeber Sh*t "...I have to say, that cracks me up...Sug, I'd never thought of it being a symptom of just RLS. But your right. It just so happens I found out that my suffering has a name. CRS........fell out of my chair.
On a serious note, it is a huge problem for me as well. I can write it all down, but forget to look at the calendar. I can remember things I don't need. I can remember that I forgot something, but what was it that I needed to remember. It's truely no fun and games to be an adult and still feel lost and childish for not knowing what day it is. i've bowwled every Wed. morning for 7 years now..........Tues. night I'm asking, what is today? My friends and family are learning that "time" is invisible to me, because there is no break. there's not days and nights, Just awake forevers and sleep moments. It does build up and it is deadly to our health and to our spirits. It's embarrassing.

[jan3213]

Hi Sug and Becat, et al

Ya gotta laugh or you'll cry!! Ha!! Seriously, have either of you, or anyone else for that matter, been in the middle of a sentence, and couldn't remember the VERY NEXT WORD you were trying to say? OR when introducing, say, your BEST FRIEND, you couldn't think of his/her name? Talk about embarassing. I know people say that happens to them, but, let's get real guys, it does happen to "us" more than the average folks if you just stop and think about it and you really start talking about it to other people who have RLS. I really hope people fill out those lifestyle changes, Becat, because I think when they are all put together, Jumpy and others will see a big picture start to emerge. I think of RLS as something like "fingers" or a "web" reaching out in ever direction, grabbing all kinds of things that we don't even realize yet. I think it's impact even bigger than any of us realize. And, I'm not trying to be dramatic. You just read some of these posts and see how many ways RLS effects people. I've had it for 20 years (I know, HOW MANY TIMES DOES SHE HAVE TO SAY IT!! HA!), but I've learned so many ways it has effected ME even in the last month!! That's why I think you, Becat, and Jumpy and everyone who has taken the time to fill out a questionnaire and written a lifestyle change deserves a pat on the back because we may have started something that can't be stopped---called CHANGE!!!

Jan

[Sara]

Hey, all--

I wonder if CRS is why I was just telling Becat today I can never remember to take my nutritional supplements??? Seems like every type needs to be taken at a different time, full-stomach, empty-stomach, different order, not this one with that one. They might actually HELP me if I could ever get them ON BOARD in any sort of coherent manner!!!

Since I sleep more than most of you, so far MY case of CRS is worst for "Can't Remember Supplements"!!!!

Seriously, though, I noticed that I was sort of "eye sleepy" if you know what I mean, driving this afternoon. This week it's probably lack of sleep, but I've always been a very alert driver, so THANK YOU folks for reminding me that if less sleep gets to be a pattern, I'm going to need to be extra careful!

Oh, and Becat... it really struck me what you said about "awake forevers and sleep moments". Big hugs to you. And to everyone here.

Sara

[sugbrendas]

Hi Jan,becat,Sara

I feel like crap..I'm without all of my extra meds,head is exploding.
Night # 1 without my goodies.I think I did something to my dog again.
I woke for no reason and she was standing and shaking real bad.I felt so bad,I couldn't go back to sleep.
#2(last night) Before I fell asleep my dh grabed my hand and was holding it..I asked him if he knew he was and he said yes..I fell asleep with him holding my hand..Maybe he's was trying a last effort before I went to sleep to get on my good side..He told me he's more afraid of me now than ever. OR Some type of comfort so I wouldn't hurt my dog,it would kill me if I did something to her.
FYI,can't sleep without her either.She was in puppy ICU for a week and it was horrible,I couldn't sleep cause I kept feeling for her and she wasn't there. They asked me to put her down,said it was hopeless but I bought her home and said if she was gonna die it would be in our bed next to me like always..I gave her several injections a day,force fed her chicken broth and nursed her back to health.That was a couple of years ago.

Getting back to memory, my foster son's social worker bought up what she thought was so funny..She said remember when you asked me what day it was and I said the 20th and then I said yeah and what month?
On days i do my bills I write the month and day on the back of my hand.
Once even the year cause I had to go back and open all of the ones I had done when I realized I had put the wrong year! GEEZ!

Well,I admit it is kinda funny

[Anonymous]

I have just found this website and am sitting here crying with such emotion... there are more of me out there and we all have/hate RLS

I've had this awful twitching since 1995 when I saw an Health segment on local news station and stood up screaming... 'Hey, that's me!' tried tons of medications finally finding Mirapex to alleviate symptoms. Lately the Mirapex isn't working as good as it used to and I've had to increase the amount taken. It is expensive (no insurance at present) so to increase adds a burden I don't need.
I think I've read all posts here and I have what I've been told by my doctor is one of the rare kinds of RLS... it does come into my arms and torso. I have recently added a 'significant other' to my list of animal roommates and he also has done tons of research on RLS, especially after I kick him all night!
There is so much I want to write about but I'm sure everyone has heard it all... after reading the posts I am smiling and nodding 'yes' at every new one... it is good to know I'm not alone.

[jan3213]

Hi, I'm Jan

YOU ARE NOT ALONE!!!! You have a family now! Have you been diagnosed by a doctor? Do you have a doctor who listens to you? That's really important. I'm so glad you found us, but so sorry you have RLS. Isn't it just tons of fun? LOL A lot of people just do not understand, BUT WE DO!!! The first thing I did when I joined was read every post I could and ASK QUESTIONS!! Someone will see your post and, I promise, will answer ASAP. We have members who are great at researching, members who are really knowledgeable about medicines, people who know about alternative methods that you might try, and people who are willing to share their own experiences, just lend an ear to listen when you want to vent or a shoulder to lean on when you feel completely down. You've found a family, Rethna, and we are so glad!!! WELCOME!!!

Jan

[Heronak]

Rethna,

It really is a relief to know you're not crazy, not alone, isn't it! I felt the same many years ago when a neurologist gave it a name for me. Welcome, and I hope you can finds some relief.

FYI, I'm taking .125mg Mirapex about one hour before bed and that has works most nights for me. If it doesn't, or hasn't worked for a few nights, I'll add temazepam or lorazapam to that and that supresses all but the worst symptoms.

I also get RLS in my arms - I'm not so sure it's that rare. All the best,

Heron

[Guest]

Heron,do you find that Mirapex works very quickly.I often referred to them as "knock out drops"
I'm glad it's working for you. I didn't feel refreshed when I was on it.Almost like the how you feel when you get general anesthesia.
I've often called it a date rape like drug.I didn't even know I was going to the bathroom.
Everyone is different and I think advanced RLS does affect other limbs/parts of your body.Mine has gone to PLMD too.
Right now i'm on Klonopin,Ultram and Flexeril.It seems to be helping.I took myself off of Deseryl.
It's always and try and see game.
I'm so happy to have found support here.I looked for support for many years,people who don't have RLS don't really understand.
Brenda

[jan3213]

Hi Guest, it's Jan

Wanted to talk about Mirapex. I've had RLS for 20 years and I've been on Mirapex, oh, I don't know, probably at least 5 ot 6 years. I'm up to 1 mg 2 x daily and it DEFINITELY does not act like "knock out" drugs for me. As you said, everybody is different. I actually only sleep 3 or 4 hours a night, even then awakening 3 or 4 times a night. I'm also on Clonazepam, 2 mg. 1 x daily. I wish these drugs would knock me out. LOL I have what I would consider advanced RLS. Clonazepam is a generic form of Klonopin. I have RLS in my arms, legs, torso. If I don't take drugs, and sometimes, even if I do, I'm a wreck. Creepy-crawly all over. I have the painful kind. I hurt all over and am wondering if I'm getting fibro. Support IS very important and this forum is wonderful. Guest, I hope you consider joining us. We are a familiy and support here is wonderful. We have members who are so helpful in all sorts of areas and members who will listen until their ears fall off! WE ALL UNDERSTAND WHAT EACH SUFFERER IS GOING THROUGH!!! I see that your name is Brenda. WE ARE A FAMILY AND WE ALL REALLY CARE!!! You've found a home!!! Jan

P.S. You might want to read as many posts as you can. They are informative, funny and inspirational. The non-pharmaceutical section is quite informative and has some really good ideas!

[Heronak]

Brenda,

Nope, Mirapex definately does not knock me out but it does make me sleepy eventually, so I don't think I could take it during the day as some do (Jan, do you take it during the day?). Hope you've slept decently,

Heron

[jan3213]

Hi Heron, it's Jan

No, I take both Mirapex at night. I had a sleep study last June and because I was drowsy during the day, the sleep doc recommended I take both at night. But, oddly enough, I still don't sleep at night. Hmmmmmm.

As I said, when things settle down here, I'm going to my neuro in St. Louis and hoping he'll change some of my meds. I think I've been on Klonopin too long perhaps. Who knows. I'm also worried about the constant pain.

Thanks for asking.

Jan

[jmarie1979]

Wow. I guess there are a lot of doctors out there who think this is just someone whining. I have told my doc thousands of times that I can't keep going on like this, the older I am getting the more I notice how it interupts my life. I have been in the car and forgotten where I was going or how to get there from the lack of sleep I get. His solution was that between my memory loss and my joint pain and the "twitching" (his words not mine) im my limbs were classic symptoms of MS ( multiple sclerosis ) a shitload of blood work and a horrible experience with a spinal tap later it turns out he was wrong. It certainly is debillitating when I can't make it through a night at work or a 2 hour flight to see my family without getting some sort of drug in me. I am at my wits end. Tired of taking meds that don't do anything but make me suffer more from the side effects. Sorry if I am whining, but as I am sure you can all agree, this is a frustrating thing to deal with. Any suggestions?

[jan3213]

Hi Jmarie, it's Jan

Sounds like you've been through the mill!! Have you had a sleep study done? That might be a good idea. They are expensive, so the next question is, do you have insurance? I take it you haven't officially been
diagnosed with RLS. Most of us were self-diagnosed before doctor officially diagnosed us, so that's not unusul. And, it is also not unusual for people to not take you seriously, even your family. I've had it for 20 years, and, unfortunately, my own husband thinks that my own inabiity to sleep is self-induced. We had that conversation tonight. I asked him to read the posts on this forum, and his answer was "I know all about RLS". Well, he doesn't, he just thinks he does. What kind of meds are you on? I have never had my blood tested for an iron count, but I guess they do that now. Have you? And, have you read a lot of the posts on this board? If not, I would do that. And, we invite you to join our "family" . We are a group of people who care for one another, each of us with his or her own abilities. We have peole with wonder research abilities, people who have medical backgrounds, and most of us are here just to lend an ear or a shoulder when you feel down and need someone to "talk" to. We all are willing to share our experiences and anything that has helped us, be it medical, or, in some cases, there are things in the non-pharmacital section which you mght want to try. Some of the ideas might seem unusual, but I know some members who have found relief using some of those ideas! Once again, WELCOME TO OUR FAMILY. We're glad you found us. I don't know if I helped you or not--at the very least, you know you're not alone!! Take care!!!

Jan