Glad and sad Im not the only one
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Feliciahastwitchies
- Posts: 12
- Joined: Thu Jul 28, 2005 2:33 am
- Location: Maumee, Ohio
Glad and sad Im not the only one
Just wanted to say Hi to all you twitchy legged non-sleepers. I have dealt with this for 2 years. I had insomnia and took Tyl Pm thinking that it would help. Instead I had this weird leg thing. I blammed the Tyl Pm. Come to find out. I have the weird twitchy thing without the Tyl Pm, Tyl Pm just makes it worse. I was wondering though if anyone else feels anxiety or..umm...muscle tightining during the day? It seems I have to consciencly relax myself. I am starting Clonazepam .5 mg tonite. I am hoping for the best but expecting little.
Hi Felicia!
I've been having the worms since I was probably around 14 (I'm 23 now) but only figured out what was going on in March. I thought it was everything from growing pains to caffeine to stress to too tight of pants! The first drug that I was on was .5 Mg of Clonazepam, which worked for a while. My doc has me on Sinemet now, as the Clonaze left me feeling dopey in the daytime, and after a while the general effectiveness wore off. Usually I can handle the dopey feeling, but my summer job is one that I need to be alert for, so no daytime dopiness for me.
Most of the time I get muscle tightenings, I usually just wander aimlessly or pace, depending on where I'm at. One of the things I've noticed is that I start getting a lot of leg pain at night and it *feels* like it's going to go into leg jerks, but never does. It's frustrating, cause I'm just thinking "go on, TWITCH!" and it never does.
GAH!
Anyways, this is a bit longer than I was expecting. Good luck with the Clonazepam!
I've been having the worms since I was probably around 14 (I'm 23 now) but only figured out what was going on in March. I thought it was everything from growing pains to caffeine to stress to too tight of pants! The first drug that I was on was .5 Mg of Clonazepam, which worked for a while. My doc has me on Sinemet now, as the Clonaze left me feeling dopey in the daytime, and after a while the general effectiveness wore off. Usually I can handle the dopey feeling, but my summer job is one that I need to be alert for, so no daytime dopiness for me.
Most of the time I get muscle tightenings, I usually just wander aimlessly or pace, depending on where I'm at. One of the things I've noticed is that I start getting a lot of leg pain at night and it *feels* like it's going to go into leg jerks, but never does. It's frustrating, cause I'm just thinking "go on, TWITCH!" and it never does.
GAH!
Anyways, this is a bit longer than I was expecting. Good luck with the Clonazepam!
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Feliciahastwitchies
- Posts: 12
- Joined: Thu Jul 28, 2005 2:33 am
- Location: Maumee, Ohio
Hi Mylo,
I know your feeling. Like your legs are on the verge of doing something but it just never happens. Like I posted somewhere I would just hit them! I look like a psycho let me tell you. I have also found that my friends and family do not take it seriously and it is difficult for them to understand. Have you had the same type of responce? I want them to read about the syndrome but I really do think most people think you have to be making it up. I did really well last night with the clonzapam. I was wondering if you would build a tolerence and have to switch to different things to get the same effectiveness. I guess you answered that for me..lol
Thanks for your reply!
Fel.
I know your feeling. Like your legs are on the verge of doing something but it just never happens. Like I posted somewhere I would just hit them! I look like a psycho let me tell you. I have also found that my friends and family do not take it seriously and it is difficult for them to understand. Have you had the same type of responce? I want them to read about the syndrome but I really do think most people think you have to be making it up. I did really well last night with the clonzapam. I was wondering if you would build a tolerence and have to switch to different things to get the same effectiveness. I guess you answered that for me..lol
Thanks for your reply!
Fel.
Well, my family have been supportive. My mom got diagnosed with Parkinson's a week after I got my RLS diagnosis, so that sorta helps with any tension that was there. It's kinda bonded my mom and I closer together - we often take the same drugs at the same time, so we can discuss side effects and whatnot.
As for relationships, the last guy I was with was convinced that the RLS was my body's inability to properly relax. I always felt like a loser for taking my RLS drugs at his house. Not a very healthy situation.
I tend to not tell friends unless I Have To, just because I'm afraid of people laughing or saying it's in my head or whatever.
I'm glad to hear your success with the Clonaze!
I was on it from March until May before the tolerance built up. Part of the reason for switching meds though was my lifestyle was changing for the summertime and I need to be alert. Clonaze's long half life definatey inhibited my daytime alertness. I hope you get many good night's rest with the Clonaze. When it works, it's simply awesome. 
As for relationships, the last guy I was with was convinced that the RLS was my body's inability to properly relax. I always felt like a loser for taking my RLS drugs at his house. Not a very healthy situation.
I tend to not tell friends unless I Have To, just because I'm afraid of people laughing or saying it's in my head or whatever.
I'm glad to hear your success with the Clonaze!
I was on it from March until May before the tolerance built up. Part of the reason for switching meds though was my lifestyle was changing for the summertime and I need to be alert. Clonaze's long half life definatey inhibited my daytime alertness. I hope you get many good night's rest with the Clonaze. When it works, it's simply awesome. -
Feliciahastwitchies
- Posts: 12
- Joined: Thu Jul 28, 2005 2:33 am
- Location: Maumee, Ohio
Yes, it feels like a miracle right now. I understand how you don't want to tell anyone unless you have to. People aren't aware of what it is and now the commercial might help, they might also think it is in our head because of watching the commercial. If that makes any sense..lol
The fact is, no one will understand unles they have it themselves, that's the bottom line.
I hope the same sleep for you! Sleep, who knew it was such a precious commodity!
P.S. I need spell check on here!
The fact is, no one will understand unles they have it themselves, that's the bottom line.
I hope the same sleep for you! Sleep, who knew it was such a precious commodity!
P.S. I need spell check on here!
Hi
Hi Felicia and Mylo,
Don't think I've said hello and welcome to you both.
I wanted to send a comment your way about talking about RLS with others.
I'm 41 and seemingly had this all my life, only gotten to a severe stage in the last 10 yrs. or so. Who knows, I've lost too much time.
I come from a family full of RLSers and a family that don't go to docs very often. Healthy and blessed. Honestly few of the many of us that have RLS are on my level with it. I should just get over it by now.....right?
I have friends that love me enough to listen, but as you know it's hard to explain or believe. "What do you mean you haven't sleep longer than 1-2 hours at a time in 8 yrs.? Impossible!" However, they know to call me the night before a planned event to make sure I remember. Who cares what day it is, if your trying to just make it through the day.
I had to learn how to talk about it. My poor husband, a wonderful man thought I was mad at him for 7-8 yrs.. I have a painful form of RLS and honestly, a great pain tolerance. But he, nor I, had any idea how much pain and how long I could take it. I was always trying to compare mine own body problems to his to get him to understand. He's been a workout junky for a couple of years. If he strained something I'd try to relate it to mine. I finally took him to an appt. with me so he could ask his own qurstions. Hear for himself what the doc had to say. That started our open conversations about how I lived. He's seen me not be able to walk, sleep, eat, function, but he never really understood.
This May, he had open heart surgery and you'd never know but the scar.
One afternoon, he did too much with his upper body....arms. Painted the fence and parts of the house, mind you , while his still in rehad.
Anyway, he pulled a muscle in his shoulder blades. He was really hurting for days.
On our nightly 1 1/2 mile walk he says " I'm probably going to take a pain pill tonight. ( a rare thing for him) I have try to do this for the last 10 hours and ease this out, but it's not relaxing at all." I understood for sure. Then it really hit him......."you feel like this all the time, don't you? You have for many years now. Everyday!"
He got it! I just cried and walked, smiled and held his hand.
It may take some time to learn how. Find the right words. Reach those that love you enough to learn. But it happens and it's just as wonderful as knowing the name for RLS.
Ya'll hang in there.
Hugs to all.
Don't think I've said hello and welcome to you both.
I wanted to send a comment your way about talking about RLS with others.
I'm 41 and seemingly had this all my life, only gotten to a severe stage in the last 10 yrs. or so. Who knows, I've lost too much time.
I come from a family full of RLSers and a family that don't go to docs very often. Healthy and blessed. Honestly few of the many of us that have RLS are on my level with it. I should just get over it by now.....right?
I have friends that love me enough to listen, but as you know it's hard to explain or believe. "What do you mean you haven't sleep longer than 1-2 hours at a time in 8 yrs.? Impossible!" However, they know to call me the night before a planned event to make sure I remember. Who cares what day it is, if your trying to just make it through the day.
I had to learn how to talk about it. My poor husband, a wonderful man thought I was mad at him for 7-8 yrs.. I have a painful form of RLS and honestly, a great pain tolerance. But he, nor I, had any idea how much pain and how long I could take it. I was always trying to compare mine own body problems to his to get him to understand. He's been a workout junky for a couple of years. If he strained something I'd try to relate it to mine. I finally took him to an appt. with me so he could ask his own qurstions. Hear for himself what the doc had to say. That started our open conversations about how I lived. He's seen me not be able to walk, sleep, eat, function, but he never really understood.
This May, he had open heart surgery and you'd never know but the scar.
One afternoon, he did too much with his upper body....arms. Painted the fence and parts of the house, mind you , while his still in rehad.
Anyway, he pulled a muscle in his shoulder blades. He was really hurting for days.
On our nightly 1 1/2 mile walk he says " I'm probably going to take a pain pill tonight. ( a rare thing for him) I have try to do this for the last 10 hours and ease this out, but it's not relaxing at all." I understood for sure. Then it really hit him......."you feel like this all the time, don't you? You have for many years now. Everyday!"
He got it! I just cried and walked, smiled and held his hand.
It may take some time to learn how. Find the right words. Reach those that love you enough to learn. But it happens and it's just as wonderful as knowing the name for RLS.
Ya'll hang in there.
Hugs to all.
Hi Be, thanks for sharing your story.
One of the biggest hurdles I have when it comes to RLS and sharing it with people is that I'm still in college. A lot of my friends aren't lifelong, only known them for a few semesters; and while it's a good barometer about finding Friend Friends vs. just friends, it's just so weird. I see the university doc, who is just SO EXCITED because he's never had a RLS patient before. I doubt I'm the only one on campus with it, but it took Academic Probation for me to get a clue and see a doc.
For added fun, I'm back in the dating scence; while it's not like I say "Hi, I'm Mylo and I have RLS" right off the get go, I don't want to end up with a chap like the last boy, who was convinced it was all in my head. The Sinemet is the reason why I don't drink alchohol, and popping pills in the evening in a social enviornment - a bit weird. There is a guy that I like, who knows I'm on "heavy drugs" as I call them but not what for. I usually tell people (and him) that it's a type of anti-convulsent, they get all confused but don't push the issue. I really just want to be like, "look, this is going to sound weird to you, but I have RLS, and it's characterized by such and such, and that is why I am on the drugs". But it all comes back to the Fear of Rejection, which also is another reason why I'm hesitant to tell friends.
RLS has already crippled and killed one relationship (okay, it had other problems but the RLS definately didn't help things), and I'm super concerned about it happening again. But it's not like the RLS is going to go away.
A lot of people just don't get it, unless they have it. Unfortunately, a lot of idiots are going to not believe me, or whatever. Annnnd in the end once I finally find friends and a guy who can deal with the RLS it will be all worth it, but fighting the battle does have its pain.
Wow, aren't I an upper tonight.
One of the biggest hurdles I have when it comes to RLS and sharing it with people is that I'm still in college. A lot of my friends aren't lifelong, only known them for a few semesters; and while it's a good barometer about finding Friend Friends vs. just friends, it's just so weird. I see the university doc, who is just SO EXCITED because he's never had a RLS patient before. I doubt I'm the only one on campus with it, but it took Academic Probation for me to get a clue and see a doc.
For added fun, I'm back in the dating scence; while it's not like I say "Hi, I'm Mylo and I have RLS" right off the get go, I don't want to end up with a chap like the last boy, who was convinced it was all in my head.
The Sinemet is the reason why I don't drink alchohol, and popping pills in the evening in a social enviornment - a bit weird. There is a guy that I like, who knows I'm on "heavy drugs" as I call them but not what for. I usually tell people (and him) that it's a type of anti-convulsent, they get all confused but don't push the issue. I really just want to be like, "look, this is going to sound weird to you, but I have RLS, and it's characterized by such and such, and that is why I am on the drugs". But it all comes back to the Fear of Rejection, which also is another reason why I'm hesitant to tell friends.
RLS has already crippled and killed one relationship (okay, it had other problems but the RLS definately didn't help things), and I'm super concerned about it happening again. But it's not like the RLS is going to go away.
A lot of people just don't get it, unless they have it. Unfortunately, a lot of idiots are going to not believe me, or whatever. Annnnd in the end once I finally find friends and a guy who can deal with the RLS it will be all worth it, but fighting the battle does have its pain.
Wow, aren't I an upper tonight.
Feliciahastwitchies wrote:Yes, it feels like a miracle right now. I understand how you don't want to tell anyone unless you have to. People aren't aware of what it is and now the commercial might help, they might also think it is in our head because of watching the commercial. If that makes any sense..lol
The fact is, no one will understand unles they have it themselves, that's the bottom line.
I hope the same sleep for you! Sleep, who knew it was such a precious commodity!
P.S. I need spell check on here!
I hear ya about the sleep! I have been at my current college for three years now. The first 2 years my grades took a tumble but no one could figure out why. Last semester I was put on Academic Probation (aka, get the grades up or get thrown out), my advisor made me go to the counselling center for what we thought was test anxiety. The counsellor asked how I sleep, and when I said "miserably", she sent me to the University Doc.
Anyways, to get to the point; I got on the Clonazepam right after Midterms. Before midterms, I was getting 30%s on exams in one of my classes. 2 weeks into the Clonaze (and sleeping better), we had another exam. Would you believe my grade went from a 30% on exams to an amazing 78%?! I was so excited! I managed to get the needed grades to stay in school, thanks to getting GOOD SLEEP!
It just makes me like sleeping even more (except for when the worms strike).
Your Right
Mylo your right. And it's ok if your not up tonight, heck this is where we come to vent. We all Do understand what your dealing with. Don't feel bad about sharing with us, ever! Some of us oldtimers need new eyes sometimes. I'm glad you shared.
I have been old and married for so long, heck I doubt I could catch a cold even without RLS. LOL
I can relate in a way, about finding a date or anything more important. BUT, I was at a mild, managable stage when I met my now hubby. He might have thought twice if I kicked him in bed like I do now. (ooooooo my that sounds bad! hmmmm I was a good girl
)
I can really relate to the function level you were at before meds. I think I didn't function for years before I found help. It's just unthinkable that we function at all sometime.
I'm sure your happy to be the "lab rat" for your doc.....but maybe it will help out some others on campus. I happy for you about the grades. Job well done, easier when you can do it with a bit more energy right?
Your keep teaching me how to be young. I 'll listen everytime you want to vent.
Hang in there and keep up the good work in school.
I have been old and married for so long, heck I doubt I could catch a cold even without RLS. LOL
I can relate in a way, about finding a date or anything more important. BUT, I was at a mild, managable stage when I met my now hubby. He might have thought twice if I kicked him in bed like I do now. (ooooooo my that sounds bad! hmmmm I was a good girl
)
I can really relate to the function level you were at before meds. I think I didn't function for years before I found help. It's just unthinkable that we function at all sometime.
I'm sure your happy to be the "lab rat" for your doc.....but maybe it will help out some others on campus. I happy for you about the grades. Job well done, easier when you can do it with a bit more energy right?
Your keep teaching me how to be young. I 'll listen everytime you want to vent.
Hang in there and keep up the good work in school.
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ViewsAskew
- Moderator
- Posts: 16588
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Feliciahastwitchies wrote:P.S. I need spell check on here!
Hey, on one of my stained glass boards, someone posted a link to "iespell'. It downloads and creates a link on the menu bar on the top of Internet Explorer. All I have to do is remember to click on it and it checks my posts! Very easy and it's available no matter what site I am on. I've been on those glass boards for 3 years with typing errors and almost a year here. Now as long as I used the right word in the first place, it works well.
http://www.iespell.com/
Ann
Re: Your Right
becat wrote:Mylo your right. And it's ok if your not up tonight, heck this is where we come to vent. We all Do understand what your dealing with. Don't feel bad about sharing with us, ever! Some of us oldtimers need new eyes sometimes. I'm glad you shared.
I have been old and married for so long, heck I doubt I could catch a cold even without RLS.
Oh no, I never meant to make anyone feel bad for not being college-aged!
This forum is awesome, cause you guys all know what I'm talking about, and that's just awesome. Rest assured, I'll be in to vent. And to sit at the feet of the 'oldtimers' and learn new things.
I kicked the last guy I dated a lot in bed (*ahem*, not in that manner
), so whoever wants to date me, or at the very least; share sleeping space best wear shinguards!
I know the more I talk about it I'll probably find someone who has no clue what RLS is, but has it and living in misery. I'd like to think that perhaps the RLS media attention will be picked up on a local level and I can help someone.
It's just frustrating to know that unless something monumental occurs, I'll have this forever; but still try and be a college girly and get my degree, and all that other stuff. The good news is that I'm majoring in geology, which requires a lot of walking around - perfect for me when the worms hit, and those times when the meds don't really help.
I'm going to attempt sleep, speaking of worms. No worms tonight, but definately got that Restless Feeling.
*hugs*
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
awwwwwwww
HI Penguin, Mylo,
Awwww Penguin, it's far too late to kick him now, he's strong and would kick back. LOL Yes, you know, I know, I'm lucky. Just the facts, but I take the attitude that he's (for the most part) lucky to have me too. LOL love that one!
Mylo, you didn't make me feel bad about my age, 41 at bad at all. Yes, come sit on my feet, not at them....love the pressure sometimes. LOL
We all learn from each other.
I can't really imagen what it would be like to go to college, the study and social life with this. So your experiences do teach me another angle.
Your right, get that degree, enjoy your life, your age makes no diffrence. All of us should strive for the best we can do, have, and get. Last year I wouldn't have bet that I would be walking 1 1/2 miles a night. Here I am. When your on a good treatment path things will even out.
Geology, love it.
I have the same reservations about the progressive part of this disorder. Think we all tend to think about that. Hopefully, I've topped that part out.
Hugs and howdys to all.
Awwww Penguin, it's far too late to kick him now, he's strong and would kick back. LOL Yes, you know, I know, I'm lucky. Just the facts, but I take the attitude that he's (for the most part) lucky to have me too. LOL love that one!
Mylo, you didn't make me feel bad about my age, 41 at bad at all. Yes, come sit on my feet, not at them....love the pressure sometimes. LOL
We all learn from each other.
I can't really imagen what it would be like to go to college, the study and social life with this. So your experiences do teach me another angle.
Your right, get that degree, enjoy your life, your age makes no diffrence. All of us should strive for the best we can do, have, and get. Last year I wouldn't have bet that I would be walking 1 1/2 miles a night. Here I am. When your on a good treatment path things will even out.
Geology, love it.
I have the same reservations about the progressive part of this disorder. Think we all tend to think about that. Hopefully, I've topped that part out.
Hugs and howdys to all.
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Feliciahastwitchies
- Posts: 12
- Joined: Thu Jul 28, 2005 2:33 am
- Location: Maumee, Ohio
ViewsAskew wrote:Feliciahastwitchies wrote:P.S. I need spell check on here!
Hey, on one of my stained glass boards, someone posted a link to "iespell'. It downloads and creates a link on the menu bar on the top of Internet Explorer. All I have to do is remember to click on it and it checks my posts! Very easy and it's available no matter what site I am on. I've been on those glass boards for 3 years with typing errors and almost a year here. Now as long as I used the right word in the first place, it works well.
http://www.iespell.com/
Ann
Thanks Ann I got that and will use it after I type this.
Hey, that works!
Now everyone will think I'm smart! lol
BTW I am also a college student. I am 31 years old though! I just graduated and am now looking for a job. Until I figure out how well this med will help me I can't decide whether I will need a night job or not..ha ha!
Have to say, Day 2 of sleeping and no TWITCHIES!! Well, acctually there was some, but nothing that didn't go away before too long.
This is so great to talk and relate to you all. I love it!