I am very new to this. I haven't even seen a doctor about it yet. First of all, I'm so glad you are here and I'm not going totally nuts. I too, thought my problem was anxiety, as I see a lot of people say here. I'm glad it has a name. I've been fighting this for a long time, not knowing what my problem was, but just that no one else I knew had the same problem. Here is my question: I think my doctor is going to be pretty clueless on this topic. I need help soon, and do not want to school my doctor on this topic, although I do have an appointment with him first. But afterwards, should I see a neurologist or a sleep clinic? The Clinics are the ones that seem to acknowledge the problem - with their listings in the phone book, but I don't know if that is really the right choice, as I'm still confused on what really causes this problem. Thank you so much.
Katie
I Could Cry!
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ViewsAskew
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Katie - Welcome! You are member 800! I shouldn't sound so excited about you having the dreadful disorder, but I am excited that people are finding out about it.
You have already done some reading, I can tell. Maybe you've read some of the information on this site. I am a big advocate of learning as much as you can. Here's my advice. Start with this thread. It contains a link to another thread here and to many places to get information.
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=549
There is a link to an algorithm that will help you and your doc find out how to best start the process. There are links to articles you can print out and give to your doc. You can find info out about various drugs, etc. You can also start reading past posts. There is a lot of great info posted on a variety of topics.
I'm glad you found a name for this. That's one of the best feelings most of us have. And you found a group of great people that can provide support, help, and information.
Ann
You have already done some reading, I can tell. Maybe you've read some of the information on this site. I am a big advocate of learning as much as you can. Here's my advice. Start with this thread. It contains a link to another thread here and to many places to get information.
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=549
There is a link to an algorithm that will help you and your doc find out how to best start the process. There are links to articles you can print out and give to your doc. You can find info out about various drugs, etc. You can also start reading past posts. There is a lot of great info posted on a variety of topics.
I'm glad you found a name for this. That's one of the best feelings most of us have. And you found a group of great people that can provide support, help, and information.
Ann
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Guest
Wow - I'm a milestone! That's kinda cool! What I've read here is a bit discouraging as well as welcome information. And truthfully its really scary. Maybe I've read too much too soon, I don't know. Thanks for this site info. I'm sure it'll help. Any one who can give me any insight as to what works for them would be great!
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ViewsAskew
- Moderator
- Posts: 16584
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Katie, here's my personal belief. Most people with RLS come here, get some advice, see a doctor, get the right treatmet and we don't ever see them again. The rest of us are the ones for whom it didn't work so well or who just like hanging out here helping others. So the stories can be a little skewed. You know, reading your post just occurred helped me realize that telling new people that haven't yet had any treatment to read the messages may not be helpful! The links, yes, but our posts, maybe not 
.
There is no one "right treatment." Each of us is different. Some, like Sara and Capt Gene, handle with lifestyle changes. Others, like me, did that but found we still needed to take drugs of some kind. The drug or drugs to take is so dependent on what your RLS is like, how often you have it, if you have pain, etc. And different drugs work with different people. The Mayo's Algorithm listed in thread 549 is the best place to get an idea of what you might need based on how severe and frequent your RLS is.
If you tell us a little more about what your RLS is like, someone with that kind of RLS might be able to tell you what he or she does.
Many of us start with lifestyle first:
taking vitamins (E, C, magnesium, calcium, folic acid)
looking at your diet (see if things seem to help it or to set it off) and making changes
stopping alcohol and caffiene
assessing sleep hygiene (bed time, temperature, clothing worn, etc)
getting other disorders that may be affecting it under control
finding out if exercise helps or hurts (time of day, amount, type)
eliminating other medication that may be causing it to be worse
use ideas from the RLS Rebel Website
check your ferrtin iron levels (if under 50, take iron)
I'm sure someone has other stuff to add.
Then you can assess if you need more help or that is good. If you need more help:
find a good doctor (there is a list on here, but call around and ask questions before you choose)
get a sleep study to see if PLMD is also a problem
consider medication
That's when you look at the algorithm and research as much as you can about meds, what they do, how they work, how long they work, etc. Ask the doctor what he/she thinks you should do. That's a good time to read about people's experiences with drugs and ask if what the doctor is recommending is commonly used or something we're familiar with.
Hope this helps. (It helped me avoid working on a document that was boring me to tears!)
Ann
.
There is no one "right treatment." Each of us is different. Some, like Sara and Capt Gene, handle with lifestyle changes. Others, like me, did that but found we still needed to take drugs of some kind. The drug or drugs to take is so dependent on what your RLS is like, how often you have it, if you have pain, etc. And different drugs work with different people. The Mayo's Algorithm listed in thread 549 is the best place to get an idea of what you might need based on how severe and frequent your RLS is.
If you tell us a little more about what your RLS is like, someone with that kind of RLS might be able to tell you what he or she does.
Many of us start with lifestyle first:
taking vitamins (E, C, magnesium, calcium, folic acid)
looking at your diet (see if things seem to help it or to set it off) and making changes
stopping alcohol and caffiene
assessing sleep hygiene (bed time, temperature, clothing worn, etc)
getting other disorders that may be affecting it under control
finding out if exercise helps or hurts (time of day, amount, type)
eliminating other medication that may be causing it to be worse
use ideas from the RLS Rebel Website
check your ferrtin iron levels (if under 50, take iron)
I'm sure someone has other stuff to add.
Then you can assess if you need more help or that is good. If you need more help:
find a good doctor (there is a list on here, but call around and ask questions before you choose)
get a sleep study to see if PLMD is also a problem
consider medication
That's when you look at the algorithm and research as much as you can about meds, what they do, how they work, how long they work, etc. Ask the doctor what he/she thinks you should do. That's a good time to read about people's experiences with drugs and ask if what the doctor is recommending is commonly used or something we're familiar with.
Hope this helps. (It helped me avoid working on a document that was boring me to tears!)
Ann
HI
HI Kpinkerton and Miss Ann,
Yesssss, someone else saw that ad on TV. I'm so glad. I was freaking out, but it's one thing I've been waiting for.
It is nice to know there is a name. Interesting twist that both you and your husband might have RLS. Who wins the fight in bed? I thought my bed looked messed up un the morning. Can't imagen yours....LOL
I have to agree with Ann. Don't let the stories here scare you. Yes, it reads like all of us are in the trenches. We're not, not always. There are some oldtimers around here, yes, spreading the word and helping others is a big part of it. I know someone did it for me, when I was going nuts. Many of the stories might be from those of us that have a hard time getting the right treatment. Tons of our 800 (yeah
congrats to you....no prizes though ) members have never even posted on the boards here. Sadly, it takes all of us to create the best total picture of RLS is like to live with.
We have people that suffer on many different levels here. Some do very well without medications. Many of us us a combination of medications, alternative medicines, or life style to get the best result.
Just knowing you might have a name for the problem is comfort. Your always welcome to post on any conversation going. One big reason we post is to learn from one another. We've grown to care for each other and support one another. That is the priceless part of this group.
Knowing your body and your life style is important to knowing how to handle your RLS.
Glad your here. Ann's given you some awesome advice.
Yesssss, someone else saw that ad on TV. I'm so glad. I was freaking out, but it's one thing I've been waiting for.
It is nice to know there is a name. Interesting twist that both you and your husband might have RLS. Who wins the fight in bed? I thought my bed looked messed up un the morning. Can't imagen yours....LOL
I have to agree with Ann. Don't let the stories here scare you. Yes, it reads like all of us are in the trenches. We're not, not always. There are some oldtimers around here, yes, spreading the word and helping others is a big part of it. I know someone did it for me, when I was going nuts. Many of the stories might be from those of us that have a hard time getting the right treatment. Tons of our 800 (yeah
congrats to you....no prizes though ) members have never even posted on the boards here. Sadly, it takes all of us to create the best total picture of RLS is like to live with.
We have people that suffer on many different levels here. Some do very well without medications. Many of us us a combination of medications, alternative medicines, or life style to get the best result.
Just knowing you might have a name for the problem is comfort. Your always welcome to post on any conversation going. One big reason we post is to learn from one another. We've grown to care for each other and support one another. That is the priceless part of this group.
Knowing your body and your life style is important to knowing how to handle your RLS.
Glad your here. Ann's given you some awesome advice.