new to rls from a town where the docs know nothing
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Anonymous
new to rls from a town where the docs know nothing
im 25 and i just learned after complaing for years to doctors about my legs that i have rls.then my doc says all that there is nothing i can do, and maybe hot baths will help to temporily relieve me.i dont know anything about rls but what ive just read on this website and what i remeber reading in a magaazine about how rls may be relieved with iron supplements.i believe ive had rls for a while and that it progresses and becomes more troublesome with time.i remember having leg spasms while sleeping ever since i was little, and ive always had trouble relaxing my legs to go to sleep forever.ive also always have taken usually 2 hours to fall asleep and wake up from sleep about every hour.ive also been diagnosed with deppression and have had to take iron supplements b/c my iron was so low.ive also experienced the wierd painful crawly sensations in my egs that have increased over the years.now i have taken iron,i have taken magnessium(to help with depression),and ive even tried altering my salt intake(because someone suggested my leg pains was from too much or too little salt intake),ive tried elevating my legs,ive tried massages,ive tried hot water,and none of that seems to change anything.what i am looking for in this forum is for a pattern or some sort of connection.ive already skimmed through other postings and ive noticed that a lot of the above things ive listed have been mentioned.what i didnt find much of that im wondering about is the average age of people diagnosed,and if there is a common factor in lifestyle,health(other then rls of course lol), and diet.i read in one post about someone suggesting a survey, i think that is a great idea.so anyways i just wanted to share my experience and if anyone has any suggestions for a survey or would like to participate then that would be great.im going to talk to a researcher i know and see about setting up a survey on this forum to hopefully help get some answers b/c i cant get any from my doctor and im out of ideas.ty
Hello and welcome
WElcome to the board C,
Yes, there is a wonderful survey being done online right now. It's the cousin to the first survey Jumpyowl (fellow RLSer) did last year for the National Meeting. I've listed the link below. It's simply and only takes a few minutes to do.
www.thomasholly.net/survey/rlssurvey.aspx
About your docotr not knowing anything, that's common. It's one of things that keeps us going around here. The ignorance about this disorder and it's treatments. The are so many of us that self diagnosed ourselves and then tried to educate our doctors.
The link below is a great starting place for you. Our View put this thread together for everyone. #'s 1 and 2 are the best place to start. The RLS Algorithm is a guide to diagnosis and treatment from the Mayo Clinic. They offer a PDF file to print off. Take a copy to your doctor and keep one for yourself.
http://rls.org/phpBB2/viewtopic.php?t=549
The next link I'll give you is on this site. It's a helpful tool in finding a doctor that may know a little more than most about RLS in your area.
http://rls.org/provider_directory/
Your best bet anytime with this disorder is to educate your self about RLS and it's treatments. Don't feel that medication is the only way, there are helpful things that are non-pharm out there. For most of us it's a combination of things that make RLS manageable. Medications in combos, sleep habits, diets, you name it together we tried it all. The trick is to find what works for you. Also, support of people that suffer the same fate is wonderful. We already understand, but encourage you to share your ideas and vent if needed. We learn from one another here. Don't be shy just jump into the conversation.
We sorry to had to find us, but glad your here now.
Yes, there is a wonderful survey being done online right now. It's the cousin to the first survey Jumpyowl (fellow RLSer) did last year for the National Meeting. I've listed the link below. It's simply and only takes a few minutes to do.
www.thomasholly.net/survey/rlssurvey.aspx
About your docotr not knowing anything, that's common. It's one of things that keeps us going around here. The ignorance about this disorder and it's treatments. The are so many of us that self diagnosed ourselves and then tried to educate our doctors.
The link below is a great starting place for you. Our View put this thread together for everyone. #'s 1 and 2 are the best place to start. The RLS Algorithm is a guide to diagnosis and treatment from the Mayo Clinic. They offer a PDF file to print off. Take a copy to your doctor and keep one for yourself.
http://rls.org/phpBB2/viewtopic.php?t=549
The next link I'll give you is on this site. It's a helpful tool in finding a doctor that may know a little more than most about RLS in your area.
http://rls.org/provider_directory/
Your best bet anytime with this disorder is to educate your self about RLS and it's treatments. Don't feel that medication is the only way, there are helpful things that are non-pharm out there. For most of us it's a combination of things that make RLS manageable. Medications in combos, sleep habits, diets, you name it together we tried it all. The trick is to find what works for you. Also, support of people that suffer the same fate is wonderful. We already understand, but encourage you to share your ideas and vent if needed. We learn from one another here. Don't be shy just jump into the conversation.
We sorry to had to find us, but glad your here now.
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ViewsAskew
- Moderator
- Posts: 16585
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Jumpy, one of our members, already has a survey going. See this thread:
http://www.restlesslegs.org/phpBB2/view ... ght=survey
Your doctor sounds like he or she needs to get some information so you can get the help you need. Please try the following threads. They have links to medication lists, articles you can give your doc, and algorithm your doc can use to treat you, other methods to help your RLS, etc.
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=94
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=549
Good luck!
Ann
http://www.restlesslegs.org/phpBB2/view ... ght=survey
Your doctor sounds like he or she needs to get some information so you can get the help you need. Please try the following threads. They have links to medication lists, articles you can give your doc, and algorithm your doc can use to treat you, other methods to help your RLS, etc.
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=94
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=549
Good luck!
Ann
C,
Sorry to hear of your troubles. I thought that we must live in the same town, but I'm from Virginia. The doctors here no nothing as well. I was first diagnosed with "growing pains" at the age of 9. I am now 33 and with time the pain has gotten much worse at it is RLS! My doctors also told me to soak in a hot tub, massage my legs and take 2 Tylenol before bedtime. What do they know!!!!!
Hope the forum here helps answer some of your questions. I am learning more and more about RLS through this site. Still haven't found a remedy for mine, but I'm still optimistic about finding one. I've gone 24 years without one, I guess I can search some more.
Don't give up! You're not alone.
Chirpee
Sorry to hear of your troubles. I thought that we must live in the same town, but I'm from Virginia. The doctors here no nothing as well. I was first diagnosed with "growing pains" at the age of 9. I am now 33 and with time the pain has gotten much worse at it is RLS! My doctors also told me to soak in a hot tub, massage my legs and take 2 Tylenol before bedtime. What do they know!!!!!
Hope the forum here helps answer some of your questions. I am learning more and more about RLS through this site. Still haven't found a remedy for mine, but I'm still optimistic about finding one. I've gone 24 years without one, I guess I can search some more.
Don't give up! You're not alone.
Chirpee
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ems
Re: Hello and welcome
becat wrote:WElcome to the board C,
Yes, there is a wonderful survey being done online right now. It's the cousin to the first survey Jumpyowl (fellow RLSer) did last year for the National Meeting. I've listed the link below. It's simply and only takes a few minutes to do.
www.thomasholly.net/survey/rlssurvey.aspx
About your docotr not knowing anything, that's common. It's one of things that keeps us going around here. The ignorance about this disorder and it's treatments. The are so many of us that self diagnosed ourselves and then tried to educate our doctors.
The link below is a great starting place for you. Our View put this thread together for everyone. #'s 1 and 2 are the best place to start. The RLS Algorithm is a guide to diagnosis and treatment from the Mayo Clinic. They offer a PDF file to print off. Take a copy to your doctor and keep one for yourself.
http://rls.org/phpBB2/viewtopic.php?t=549
The next link I'll give you is on this site. It's a helpful tool in finding a doctor that may know a little more than most about RLS in your area.
http://rls.org/provider_directory/
Your best bet anytime with this disorder is to educate your self about RLS and it's treatments. Don't feel that medication is the only way, there are helpful things that are non-pharm out there. For most of us it's a combination of things that make RLS manageable. Medications in combos, sleep habits, diets, you name it together we tried it all. The trick is to find what works for you. Also, support of people that suffer the same fate is wonderful. We already understand, but encourage you to share your ideas and vent if needed. We learn from one another here. Don't be shy just jump into the conversation.
We sorry to had to find us, but glad your here now.