I have been dealing with all of the symptons listed on your website for RLS. Basically this has been something I have been dealing with since teens (I am now 34). I was very atheletic as a teen so the symptoms were passed off as over activity. My symptoms are not year round and when they did occur and I was younger I just dealt with them. Now that I am a little older my symptoms seem to be more intense. Bad enough that I talked to my PCP. I was refferred to PT and that is how I learned about RLS and was reccommened by my therapist to do research on it(hence here I am). I would like to approach my PCP with it but not sure how. I am not sure how suggsting this will be recieved. I do want to tackle this problem (if it is the problem) head on. As it is right now I am tking pain meds right now and they seem to help but I really dont want to be dependant. I am the type of person that prefers brutal honesty so any advice would be appreciated. Sorry if I blabbed on and on but I was just approached this afternoon about this.
Tom
Need advice
-
becattx
Hi Tom
Hi Tom,
Ok, I'll be brutal.........your at the right place and your doing exactly what most of us have had to do. EDUCATE YOURSELF TO EDUCATE YOUR DOCTOR. PT is not going to cure this, this is no cure. I found that PT with a recent shoulder injury was painful, beyond the regular pain during rehab. They though I was a wimp. So I educated them while I did PT. Finally had to quit because the RlS was raging. You can print off the 18 pages here and on the site "What is RLS" and help your doctor learn with you. There are other great websites as well.
We have great people here that have been walking this road for a long time....I'm a lifer, you can find my bio on page 1 of NEW/CURRENT MEMBERS HELP, in the New to RLS thread. Your welcome to add one of your own, as we are trying to fight a new fight against this as a team here.
Your going to get many people willing to help you, share with you, and listen when it feels like no one else does. We're all in the woods some days and just yell if you want to.
I also worry about the pain meds., but you'd be surprised at how many of us need them and take them on a daily basis...RLS can be painful. There are many other medications out there that are used.
Now it's your job to read, go through the post and threads here. I highly recommend Jumpyowl's thread in New to RLS. You'll learn tons. any others here. Your best defense in being educated, it's the best weapon we have.
Glad you found us. You keep us posted, we will be here for you....
YOUR NOT ALONE.
Ok, I'll be brutal.........your at the right place and your doing exactly what most of us have had to do. EDUCATE YOURSELF TO EDUCATE YOUR DOCTOR. PT is not going to cure this, this is no cure. I found that PT with a recent shoulder injury was painful, beyond the regular pain during rehab. They though I was a wimp. So I educated them while I did PT. Finally had to quit because the RlS was raging. You can print off the 18 pages here and on the site "What is RLS" and help your doctor learn with you. There are other great websites as well.
We have great people here that have been walking this road for a long time....I'm a lifer, you can find my bio on page 1 of NEW/CURRENT MEMBERS HELP, in the New to RLS thread. Your welcome to add one of your own, as we are trying to fight a new fight against this as a team here.
Your going to get many people willing to help you, share with you, and listen when it feels like no one else does. We're all in the woods some days and just yell if you want to.
I also worry about the pain meds., but you'd be surprised at how many of us need them and take them on a daily basis...RLS can be painful. There are many other medications out there that are used.
Now it's your job to read, go through the post and threads here. I highly recommend Jumpyowl's thread in New to RLS. You'll learn tons. any others here. Your best defense in being educated, it's the best weapon we have.
Glad you found us. You keep us posted, we will be here for you....
YOUR NOT ALONE.
What severity?
Welcome, Tom:
I self-diagnosed myself in March, 2004 after bungling into this website and having read the monograph written by the medical board for clinicans.
I assume that you have characteristic and unusual discomfort in your limps when at rest, they go away with movement, and have a circadian nature. If so, then you most likely have RLS. Whether it is associated with Periodic Limb Movement Disorder (PLMD) or not (probability > 0.
can be diagnosed with certainty by a sleep study which measures "arousals", jerky movements in the legs which almost wake you up. The problem is that they occur in the deepest sleep (stages 4 and 5) so one does not get sufficient restorative sleep.
What type of pain do you have? Only about 50% of RLS patients have pain but I suspect that the figure may be higher.
There is no objective test for RLS, but if the symptoms respond to a dopamine agonist such as Mirapex or Requip, then the chances are high that you have RLS.
The symptoms usually get worse with age. Now apparently you have the "intermittent RLS." Daily RLS is worse and require treatment by medication. Refractory RLS is resistant to treatment and requires a more complex approach by a knowledgeable physician. (see "algorithm of RLS management" on the General Topics forum).
You can also look for doctors familiar with RLS on this site who are near to you. You can search for them by city and state.
The more information you give us about your affliction the more we can help you.
And one brutally honest comment: You probably will not be able to avoid a confrontation with your doctor. Finding a doctor who is knowledgable about RLS will help.
I self-diagnosed myself in March, 2004 after bungling into this website and having read the monograph written by the medical board for clinicans.
I assume that you have characteristic and unusual discomfort in your limps when at rest, they go away with movement, and have a circadian nature. If so, then you most likely have RLS. Whether it is associated with Periodic Limb Movement Disorder (PLMD) or not (probability > 0.
can be diagnosed with certainty by a sleep study which measures "arousals", jerky movements in the legs which almost wake you up. The problem is that they occur in the deepest sleep (stages 4 and 5) so one does not get sufficient restorative sleep.
What type of pain do you have? Only about 50% of RLS patients have pain but I suspect that the figure may be higher.
There is no objective test for RLS, but if the symptoms respond to a dopamine agonist such as Mirapex or Requip, then the chances are high that you have RLS.
The symptoms usually get worse with age. Now apparently you have the "intermittent RLS." Daily RLS is worse and require treatment by medication. Refractory RLS is resistant to treatment and requires a more complex approach by a knowledgeable physician. (see "algorithm of RLS management" on the General Topics forum).
You can also look for doctors familiar with RLS on this site who are near to you. You can search for them by city and state.
The more information you give us about your affliction the more we can help you.
And one brutally honest comment: You probably will not be able to avoid a confrontation with your doctor. Finding a doctor who is knowledgable about RLS will help.
Jumpy Owl
RLS and physicians
Hi Tom, I'm Jan
Welcome to our "Famly"
Jumpy and Becat gave you excellent advice. You've already met two of our best members. As you see, we have excellent people ready, willing and very able to give you advice and help in any way they can! You can see where my bio is at the end of my post. As far as physicians are concerned, I consider myself extremely lucky and in the minority. I also self-diagnosed myself. Then I went to my GP, who, coincidentally had just been to a seminar on RLs at the Mayo Clinic. How fortunate for me. He referred me to an excellent, caring neurologist at Barnes Hospital in St. Louis, Mo. I now have another GP in my hometown, who is also very caring, and extremely knowledgeable regarding RLS, who manages my meds. Most people are not that lucky. So, you need to be your own advocate and learn as much as you can because my case is definitely rare. Even though I've had RLS for years, I have learned so much more about the affliction since I've been a member of this forum for just a few months, it's unbelieveable!!! And, just talking to other people who have it helps so much. I hope you continue to communicate with us, ask questions, share your experiences, and just plain complain when you feel bad. We all do!!! Someone will be here to listen!!! As I said, you already met Jumpy, who knows so much about medications, and we have excellent researchers and very caring people!! You've found a home!!!
Jan
Welcome to our "Famly"
Jumpy and Becat gave you excellent advice. You've already met two of our best members. As you see, we have excellent people ready, willing and very able to give you advice and help in any way they can! You can see where my bio is at the end of my post. As far as physicians are concerned, I consider myself extremely lucky and in the minority. I also self-diagnosed myself. Then I went to my GP, who, coincidentally had just been to a seminar on RLs at the Mayo Clinic. How fortunate for me. He referred me to an excellent, caring neurologist at Barnes Hospital in St. Louis, Mo. I now have another GP in my hometown, who is also very caring, and extremely knowledgeable regarding RLS, who manages my meds. Most people are not that lucky. So, you need to be your own advocate and learn as much as you can because my case is definitely rare. Even though I've had RLS for years, I have learned so much more about the affliction since I've been a member of this forum for just a few months, it's unbelieveable!!! And, just talking to other people who have it helps so much. I hope you continue to communicate with us, ask questions, share your experiences, and just plain complain when you feel bad. We all do!!! Someone will be here to listen!!! As I said, you already met Jumpy, who knows so much about medications, and we have excellent researchers and very caring people!! You've found a home!!!
Jan
No one is alone who had friends.
Tom,
As already mentioned, educating yourself and then your doctor is the best place to start. Two excellent links from this site to get you started:
The 2004 RLS Medical Bulletin: http://www.rls.org/literature/bulletin.html
The Algorithm for the Managment of RLS: http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf
These will give you a good education in the treatment options available for RLS.
I love that 'over activity' diagnosis, they said the same damn thing about me growing up! Hope you find some relief,
Heron
As already mentioned, educating yourself and then your doctor is the best place to start. Two excellent links from this site to get you started:
The 2004 RLS Medical Bulletin: http://www.rls.org/literature/bulletin.html
The Algorithm for the Managment of RLS: http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf
These will give you a good education in the treatment options available for RLS.
I love that 'over activity' diagnosis, they said the same damn thing about me growing up! Hope you find some relief,
Heron