i'm 28, been suffering since i was a kid (first memory of rls symptoms was when i was 8). in the 80s no doctor i went to knew what i was talking about, and my parents thought i was making it all up to get out of doing things i didn't want to do. through junior high and high school, due to a chronic lack of sleep and super low self esteem, i contemplated suicide all the time and tried it a few times. people thought i was a drug addict because i had huge circles under my eyes and i was always spacey and out of it. in college once, while in a drunked state, my friends had to physically restrain me to keep me from chopping off my legs below the knee with an axe. there have been many times when i've thought that being a double amputee would be better than how i am now- at least i would get some decent sleep!
i've learned to live with rls now. i don't think i've had decent night's sleep EVER so i don't really know what i am missing. it wasn't until a few years ago that i actually started to talk about my rls problems again (i still didn't know what it was called). last year my brother told me about a friend of his who was diagnosed with rls and he told me that his friend's problems sounded a lot like mine. i did some research into rls and i cried that day when i realized that i wasn't alone and there was actually a name for the condition that robbed me of my whole life.
basically, all my problems in life stem from a lack of sleep caused by the pain and burning in my feet. it affected my schooling, it caused me to lose jobs when i couldn't get enough sleep to work. it has ruined relationships for me (i finally realized that if i ever get married, it will have to be separate beds), and it has destroyed my own self worth among other things.
maybe i'm wrong, but it seems like there are no ways to have a decent quality of life in this condition. please someone tell me i am wrong.
long time sufferer, trying to understand more
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chopoffmyfeet
- Posts: 5
- Joined: Tue Mar 29, 2005 7:50 pm
- Location: greater chicagoland area
Hi Chop
Hi Chopoffmyfeet,
I can't speak for everyone, but we all have those days. When it feels that RLS is going to define us. Toture us. Live our lives for us.
I like you cried when I found out that this had a name. It's freeing to know your not the only one.
I'm a little older, 41. I lived for 8-9 yrs, with no sleep and high levels of daily pain. Then I got torked off and sought medical help with this stuff called "RLS". That was the begining of a long two yrs or so for me. Not only did no one know anything about this, but treatment was little to nothing like I thought I'd get. You can find last yr's story at the link below....My RLS Mountain ......and it's only part of the story.
http://rls.org/phpBB2/viewtopic.php?t=293
But I found hope here, with all the others that thought they were the only one. That had been told the craziest things, instead of the truth. We gave each other hope and support. It does make a huge difference. I am so much better than I have been in 10 yrs. or more.
I'm not the strongest person you'll find this week. My RLS and stress levels are out of the roof. I'm stuck right in the middle of a horrible spell.
I know what it's doing to my body and my RLS, but I'm ready for it. Ok, more ready for it, but not liking it.
I, like you and Sleepyhead ( who I will answer after this) have had this all my life. Probably first memory around 3-4 yrs. old. No, I've never been one to think about the end at my own hand. I'm lucky that way, I guess, but I prefer to think I'm simply not done yet. I've come along way in a year. It's almost my one yr. annv. for being here. Where I started was a bleak (sp?) place. But what I gained last year will carry me through a life time.
I have hope that we make a difference for ourselves. I got torked off enough to educate myself and hopefully others about this Quality of Life issue. Yours, mine, anyone that deals with chronic illness or disorders.
Your here and I'm here because that's life. Life gives us all things to carry, but we're learning not to let this be a burden. Learning to control the symptoms or to have a choice to control them.
Yes, My dear Chopoffmyfeet, your here and it's worth it. You never know what your post did for someone else. What your support can bring. What your education is worth. Quality of Life is due to you. Quality of Life is out there. It may take a little time and alot of trial and error. It's out there. If I found hope, you will. You are worth it. Your here now. Your not alone. There are many people that will listen, share, and be here if you need them. Trust me when I say, we're glad you found us.
I can't speak for everyone, but we all have those days. When it feels that RLS is going to define us. Toture us. Live our lives for us.
I like you cried when I found out that this had a name. It's freeing to know your not the only one.
I'm a little older, 41. I lived for 8-9 yrs, with no sleep and high levels of daily pain. Then I got torked off and sought medical help with this stuff called "RLS". That was the begining of a long two yrs or so for me. Not only did no one know anything about this, but treatment was little to nothing like I thought I'd get. You can find last yr's story at the link below....My RLS Mountain ......and it's only part of the story.
http://rls.org/phpBB2/viewtopic.php?t=293
But I found hope here, with all the others that thought they were the only one. That had been told the craziest things, instead of the truth. We gave each other hope and support. It does make a huge difference. I am so much better than I have been in 10 yrs. or more.
I'm not the strongest person you'll find this week. My RLS and stress levels are out of the roof. I'm stuck right in the middle of a horrible spell.
I know what it's doing to my body and my RLS, but I'm ready for it. Ok, more ready for it, but not liking it.
I, like you and Sleepyhead ( who I will answer after this) have had this all my life. Probably first memory around 3-4 yrs. old. No, I've never been one to think about the end at my own hand. I'm lucky that way, I guess, but I prefer to think I'm simply not done yet. I've come along way in a year. It's almost my one yr. annv. for being here. Where I started was a bleak (sp?) place. But what I gained last year will carry me through a life time.
I have hope that we make a difference for ourselves. I got torked off enough to educate myself and hopefully others about this Quality of Life issue. Yours, mine, anyone that deals with chronic illness or disorders.
Your here and I'm here because that's life. Life gives us all things to carry, but we're learning not to let this be a burden. Learning to control the symptoms or to have a choice to control them.
Yes, My dear Chopoffmyfeet, your here and it's worth it. You never know what your post did for someone else. What your support can bring. What your education is worth. Quality of Life is due to you. Quality of Life is out there. It may take a little time and alot of trial and error. It's out there. If I found hope, you will. You are worth it. Your here now. Your not alone. There are many people that will listen, share, and be here if you need them. Trust me when I say, we're glad you found us.
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Dear Chop,
You may be wrong. . . you won't know until you find a good doctor, learn as much as you can, and possibly try lots of combinations of meds to get one that works for you. I hope you're wrong, because if not, there are lots of us in your boat. . .I for one don't want to be
.
It's true that there are no miracle cures, no quick fixes, that RLS is progressive for many and can get worse. It's true that many people suffer, that many doctors don't treat it correctly and there are no drugs developed specifically for it and that many of us suffer depression along with it and feel at times that it's pointless to keep trying.
It's also true that many drugs in combination with other drugs DO work for many. It's also true that Johns Hopkins and The Mayo Clinic among others have credible research departments that are finding out amazing things. It's true that they finally know what's going wrong in the brain and that may lead to more answers, more treatment options. And it's true that almost all of us keep hoping, keep trying, and keep talking to each other to find ways to cope, heal, sleep, have relationships, and get a reasonable quality of life.
Those of us that are the most successful have learned to take charge of our own treatment. We don't accept doctors that don't help us. We are squeaky wheels in the system. We learn as much as we can so we know when what is being offered is less than optimum. We share as much as we can here so we are armed with the most current information. And, some of the time, it works pretty well. But it always works better than doing nothing or accepting what a doctor says just because he or she is a doctor.
I hope you can take a deep breath and hang here for awhile. Maybe you can suspend your disbelief for a little while, long enough to read posts and start to see the good with the bad. While you're here, you'll find plenty to make you sad, mad, empathetic, and curious. I'd recommend starting at the Yellow Brick Road. . .
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549
Regards,
Ann
You may be wrong. . . you won't know until you find a good doctor, learn as much as you can, and possibly try lots of combinations of meds to get one that works for you. I hope you're wrong, because if not, there are lots of us in your boat. . .I for one don't want to be
.
It's true that there are no miracle cures, no quick fixes, that RLS is progressive for many and can get worse. It's true that many people suffer, that many doctors don't treat it correctly and there are no drugs developed specifically for it and that many of us suffer depression along with it and feel at times that it's pointless to keep trying.
It's also true that many drugs in combination with other drugs DO work for many. It's also true that Johns Hopkins and The Mayo Clinic among others have credible research departments that are finding out amazing things. It's true that they finally know what's going wrong in the brain and that may lead to more answers, more treatment options. And it's true that almost all of us keep hoping, keep trying, and keep talking to each other to find ways to cope, heal, sleep, have relationships, and get a reasonable quality of life.
Those of us that are the most successful have learned to take charge of our own treatment. We don't accept doctors that don't help us. We are squeaky wheels in the system. We learn as much as we can so we know when what is being offered is less than optimum. We share as much as we can here so we are armed with the most current information. And, some of the time, it works pretty well. But it always works better than doing nothing or accepting what a doctor says just because he or she is a doctor.
I hope you can take a deep breath and hang here for awhile. Maybe you can suspend your disbelief for a little while, long enough to read posts and start to see the good with the bad. While you're here, you'll find plenty to make you sad, mad, empathetic, and curious. I'd recommend starting at the Yellow Brick Road. . .
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549
Regards,
Ann
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Sleepyhead
- Posts: 12
- Joined: Wed Mar 16, 2005 3:30 pm
- Location: Missouri
Dear Chopoffmyfeet,
I can say that I have been very close to where you are. The feeling of helplessness can be overwhelming. But it is can be so comforting to know that you are not alone, you are not crazy and that maybe tomorrow will not be as bad. I know that doesn't sound like much comfort now, but just knowing that what you have is real and that there are many more of us out there helps. We all have to make the most of the good days and hope (pray)that we get through the bad ones. I have found power in spreading the word on RLS and telling people just what it is and what it does to the victim. I somehow feel like I have more control over it if instead of feeling embarrased by my strange behavior of standing up in a group, or needing to walk around in a restaurant, or standing in the back of a movie theatre, I can just tell my family/friends I am having a bad bout with RLS. It is funny how they have all learned to live with it too. I even have friends who keep a special pillow for me when I need to lay on the floor & do leg lifts etc. at their house. Now that is real support and it helps. I have been lucky. My husband says jokingly that "I sleep around" meaning that he never knows where to find me in the morning. I sleep on the sofa, the floor(the hard surface sometimes helps) or in a spare bedroom. If I am not in the bed with him in the morning, he just finds our dogs (Annie & Bandit) and that is where I will be. Please don't be discouraged and don't let RLS rob you of any more time than it already has. Arm yourself with knowledge and go forward. Don't let anyone hold you back. Keep asking questions till you find the answers and don't give up. We are all here for you!
I can say that I have been very close to where you are. The feeling of helplessness can be overwhelming. But it is can be so comforting to know that you are not alone, you are not crazy and that maybe tomorrow will not be as bad. I know that doesn't sound like much comfort now, but just knowing that what you have is real and that there are many more of us out there helps. We all have to make the most of the good days and hope (pray)that we get through the bad ones. I have found power in spreading the word on RLS and telling people just what it is and what it does to the victim. I somehow feel like I have more control over it if instead of feeling embarrased by my strange behavior of standing up in a group, or needing to walk around in a restaurant, or standing in the back of a movie theatre, I can just tell my family/friends I am having a bad bout with RLS. It is funny how they have all learned to live with it too. I even have friends who keep a special pillow for me when I need to lay on the floor & do leg lifts etc. at their house. Now that is real support and it helps. I have been lucky. My husband says jokingly that "I sleep around" meaning that he never knows where to find me in the morning. I sleep on the sofa, the floor(the hard surface sometimes helps) or in a spare bedroom. If I am not in the bed with him in the morning, he just finds our dogs (Annie & Bandit) and that is where I will be. Please don't be discouraged and don't let RLS rob you of any more time than it already has. Arm yourself with knowledge and go forward. Don't let anyone hold you back. Keep asking questions till you find the answers and don't give up. We are all here for you!
Sleepyhead
LOve It
Sleepyhead,
I love that "sleeping around"! That could be said of me, until a year ago. Thankfully it's rare when I get up now, thank you medication. But that is great.
I'm like you, spread the word. Send a message to the rest of the world. It's real and it's a lifestyle somedays.
I wanted to ask you both to think about writing a Quality of Life statement for me. All is explained at the link below......First page. It's our way of letting those that are working with us know what our life is like.
I hope you will consider it, sounds like adding your voices would be helpful to our cause.
http://rls.org/phpBB2/viewtopic.php?t=536
It's just your words, your story. Every one is different, but together it speaks volumes.
Be well and hang in there.
I love that "sleeping around"! That could be said of me, until a year ago. Thankfully it's rare when I get up now, thank you medication. But that is great.
I'm like you, spread the word. Send a message to the rest of the world. It's real and it's a lifestyle somedays.
I wanted to ask you both to think about writing a Quality of Life statement for me. All is explained at the link below......First page. It's our way of letting those that are working with us know what our life is like.
I hope you will consider it, sounds like adding your voices would be helpful to our cause.
http://rls.org/phpBB2/viewtopic.php?t=536
It's just your words, your story. Every one is different, but together it speaks volumes.
Be well and hang in there.
-
Guest
thanks for the encouragement... i needed it!
for me right now in life meds are not an option. even if i could afford a doctor and prescriptions, i don't think mentally i am ready for that yet... and with the possiblity of rebound, i don't even want to go there. if there is even the slightest chance that meds will make my rls worse, then i will not take meds.
but none of that matters cause you need $$$ to be healthy in this damn country.
a question- through this site i have found the list of doctors in my area. are the doctors on the list people who know about rls? my experiences with the doctors when i was younger destroyed my faith in the medical profession, and psychologically scarred me very deeply. if i approach another doctor with this and get laughed at again i will probably never go to a doctor for anything again.
for me right now in life meds are not an option. even if i could afford a doctor and prescriptions, i don't think mentally i am ready for that yet... and with the possiblity of rebound, i don't even want to go there. if there is even the slightest chance that meds will make my rls worse, then i will not take meds.
but none of that matters cause you need $$$ to be healthy in this damn country.
a question- through this site i have found the list of doctors in my area. are the doctors on the list people who know about rls? my experiences with the doctors when i was younger destroyed my faith in the medical profession, and psychologically scarred me very deeply. if i approach another doctor with this and get laughed at again i will probably never go to a doctor for anything again.
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chopoffmyfeet
- Posts: 5
- Joined: Tue Mar 29, 2005 7:50 pm
- Location: greater chicagoland area
Hi Chop
Hi Chop,
Yes, the doctors that are listed here on the site should be well informed about RLS. IF you did get laughed at I'd contact the foundation heads for sure. Normally that is not a problem with the people they list here.
I haven't had too many bad experiences with doctors, just was raised to deal with things on a natural path, non-medication. So I understand not wanting to go and suffer again on top of RLS.
I know the subject of not being bale to afford docs or medications has come up just recently, but don't remember just yet. Maybe someone else can.
I know that there are studies going on right now that everything is paid for. You don't list where your from, but I'm putting a link below to the page for you. Look it up and see if there is one going on close to you.
http://rls.org/multiplesitestudy.htm
Medications are a personal choice and if your not ready DON"T! It took a long time for me to even talk about RLS after I found out. GP was helpful, but didn't know how to treat it. But he tried. OBGYN was horrible about it, I had extreme PMS. UUUgggghhhhhh! Took me two years of no sleep and endless pain before I researched enough to find the right doctor. Like you, I didn't really trust that it would be a good thing. I can say that it has taken the better part of 3 yrs. for he and I to work as a team. Mostly, my fault, I had to learn to be specific and refuse what I could not do. So don't rush yourself into anything.
I hope that you know that this group is all about support. Let's face no one really understands our lifestyle. At least, not yet. But we're hear and you can count on that. Great people around this place.
Yes, the doctors that are listed here on the site should be well informed about RLS. IF you did get laughed at I'd contact the foundation heads for sure. Normally that is not a problem with the people they list here.
I haven't had too many bad experiences with doctors, just was raised to deal with things on a natural path, non-medication. So I understand not wanting to go and suffer again on top of RLS.
I know the subject of not being bale to afford docs or medications has come up just recently, but don't remember just yet. Maybe someone else can.
I know that there are studies going on right now that everything is paid for. You don't list where your from, but I'm putting a link below to the page for you. Look it up and see if there is one going on close to you.
http://rls.org/multiplesitestudy.htm
Medications are a personal choice and if your not ready DON"T! It took a long time for me to even talk about RLS after I found out. GP was helpful, but didn't know how to treat it. But he tried. OBGYN was horrible about it, I had extreme PMS. UUUgggghhhhhh! Took me two years of no sleep and endless pain before I researched enough to find the right doctor. Like you, I didn't really trust that it would be a good thing. I can say that it has taken the better part of 3 yrs. for he and I to work as a team. Mostly, my fault, I had to learn to be specific and refuse what I could not do. So don't rush yourself into anything.
I hope that you know that this group is all about support. Let's face no one really understands our lifestyle. At least, not yet. But we're hear and you can count on that. Great people around this place.
-
ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Hi Chop,
If you were to try a doctor, even from this site, I'd highly recommend calling the doc first and talking to the nurse. If you ask questions like
-what does the doctor often prescribe?
-will the doc want a sleep study?
-what happens when a patient has rebound or augmentation?
and also tell the nurse about your symptoms and issues, then you'll have an idea of what this doctor really knows and how he/she treats it. I called almost 20 docs that were in my area before I picked one after I'd had bad experiences with ones my GP sent me to. And this new doc is great. Some of the nurses outright told me not to choose the doctor I called about because my case was a problematic one and they felt I'd be better off with another doc. Some of them gave me referrals to other docs within the office they thought were better. It was time consuming, but very helpful. You can also ask people on these boards if they live near you and who they recommend, or see if there is a support group by you and see who those people see. There are many other message boards, too, so you can post on multiple boards and get LOTS of people's input.
You're sure right, not having insurance in the US can really s***. Some drug companies offer decreased costs to people with low incomes, though. My MIL is retiring, so we've been looking into ways to get her meds covered and I ran across lots of info from the drug companies on such plans.
I wouldn't go to a doctor for 14 years after I knew the name of RLS because my grandmother had not had any luck with treatment options. I am so glad I eventually did go, though. My quality of life is so improved, even though I've had problems with augmentation and rebound. Now,w when I have some bad days like I used to have all the time, I wonder how I even got through it without going mad! At the time, I was just resigned.
If you have a good doc, they won't let you suffer and will take you off immediately. Benzodiazepines do not case rebound or augmentation, nor do opioids. Of the dopamine agonists, Requip causes the least, followed by Mirapex. Sinemet causes the most. If you are armed with this info when you see the doc (and you have a good doc) and tell him/her your bottom line, chances are good they will work with you. Mine does (well, this one does, but I went through 3 to get to a good one).
Well, I've been rambling again. . .should change my screen name to Rose
.
Ann
If you were to try a doctor, even from this site, I'd highly recommend calling the doc first and talking to the nurse. If you ask questions like
-what does the doctor often prescribe?
-will the doc want a sleep study?
-what happens when a patient has rebound or augmentation?
and also tell the nurse about your symptoms and issues, then you'll have an idea of what this doctor really knows and how he/she treats it. I called almost 20 docs that were in my area before I picked one after I'd had bad experiences with ones my GP sent me to. And this new doc is great. Some of the nurses outright told me not to choose the doctor I called about because my case was a problematic one and they felt I'd be better off with another doc. Some of them gave me referrals to other docs within the office they thought were better. It was time consuming, but very helpful. You can also ask people on these boards if they live near you and who they recommend, or see if there is a support group by you and see who those people see. There are many other message boards, too, so you can post on multiple boards and get LOTS of people's input.
You're sure right, not having insurance in the US can really s***. Some drug companies offer decreased costs to people with low incomes, though. My MIL is retiring, so we've been looking into ways to get her meds covered and I ran across lots of info from the drug companies on such plans.
I wouldn't go to a doctor for 14 years after I knew the name of RLS because my grandmother had not had any luck with treatment options. I am so glad I eventually did go, though. My quality of life is so improved, even though I've had problems with augmentation and rebound. Now,w when I have some bad days like I used to have all the time, I wonder how I even got through it without going mad! At the time, I was just resigned.
If you have a good doc, they won't let you suffer and will take you off immediately. Benzodiazepines do not case rebound or augmentation, nor do opioids. Of the dopamine agonists, Requip causes the least, followed by Mirapex. Sinemet causes the most. If you are armed with this info when you see the doc (and you have a good doc) and tell him/her your bottom line, chances are good they will work with you. Mine does (well, this one does, but I went through 3 to get to a good one).
Well, I've been rambling again. . .should change my screen name to Rose
.
Ann