RLS progression experiences?
RLS progression experiences?
Hello, I'm new here, and have been reading the information available on-line re: RLS. The thing I'm not seeing much of is personal experiences. I know three other people with RLS, but two of them are my age (almost 40), so we've had limited (though long-term) experience with this condition. I know I had it as far back as 18 years old, but the past couple of years I have had increasing discomfort and numbers of episodes. I know progression depends on the person, treatment, lifestyle, etc., but I would very much be interested in hearing about others' experiences with how much their RLS increased over time. I am already having an increase, and I hope and plan to live a lot longer, so I know I may well be part of the 60% statistic of people who do progress all along the way. Thanks for any informtaion you might share with me about this. Sara
Hi Sara
Hi Sara,
I'm Becat, you can find my full bio on the bottom of this page. Your welcome to fill one out yourself. It's just easier than repeating your story over and over
I'm 40 and a lifer with RLS. Yes, this is progressive. I would add that as a child Growing Pains were powerful and often, until I hit about 16. Mine is genetic, in nature. It was realivtely mild until I broke my leg/ankle 10 yrs. ago. WoW RlS hit me like a Mac truck with no apologies. Did you have growing pains as a child? Does this run in your family?
Your so right , it's different for everyone. In my own family only 4, of the 7-8 that I know have RLS, suffers with outragous pain. There are serveral ways to fight it. It comes down to you and knowing your body. Listening to what medicaines, vitamins, and lifestyle habits .......help or hurt you. The fun part is that those list will change as we grow older.
Your very best weapon is yourself, read, learn, and question. Your doctor may or may not know alot about RLS. You may have to become the teacher, you may have to seek a specailist. You still have to remain in control, as you are the only one that can live the life.
You'll find that we have awesome peolpe here. They will listen to you, share, teach, hear your concerns and joys, and then one day you might do the same for someone else.
There are several other web sites that educate about RLS and living with it. The are many ways to cope with RLS.
We are now in the process of gathering information as a team here. If you would like to help, please go to GENERAL TOPICS and find the PLEASE READ post by our wonderful JUMPYOWL. Follow his instructions and get a copy of OUR questionaire. He is hoping tp present the combine information in Nov. at the National RLS Meeting. You may also forward to me a personal statement about your Quality of life.
Sara, I'm only glad you found us in hte event you need us. Crummy way to meet, but we're glad your her with us now.
I'm Becat, you can find my full bio on the bottom of this page. Your welcome to fill one out yourself. It's just easier than repeating your story over and over
I'm 40 and a lifer with RLS. Yes, this is progressive. I would add that as a child Growing Pains were powerful and often, until I hit about 16. Mine is genetic, in nature. It was realivtely mild until I broke my leg/ankle 10 yrs. ago. WoW RlS hit me like a Mac truck with no apologies. Did you have growing pains as a child? Does this run in your family?
Your so right , it's different for everyone. In my own family only 4, of the 7-8 that I know have RLS, suffers with outragous pain. There are serveral ways to fight it. It comes down to you and knowing your body. Listening to what medicaines, vitamins, and lifestyle habits .......help or hurt you. The fun part is that those list will change as we grow older.
Your very best weapon is yourself, read, learn, and question. Your doctor may or may not know alot about RLS. You may have to become the teacher, you may have to seek a specailist. You still have to remain in control, as you are the only one that can live the life.
You'll find that we have awesome peolpe here. They will listen to you, share, teach, hear your concerns and joys, and then one day you might do the same for someone else.
There are several other web sites that educate about RLS and living with it. The are many ways to cope with RLS.
We are now in the process of gathering information as a team here. If you would like to help, please go to GENERAL TOPICS and find the PLEASE READ post by our wonderful JUMPYOWL. Follow his instructions and get a copy of OUR questionaire. He is hoping tp present the combine information in Nov. at the National RLS Meeting. You may also forward to me a personal statement about your Quality of life.
Sara, I'm only glad you found us in hte event you need us. Crummy way to meet, but we're glad your her with us now.
Welcome Sara
Hi Sara, I'm Jan
You'll see where my bio is at the bottom of my post. Welcome to our family! I'm sorry you have RLS, but as Becat said, you've come to a wonderful place where you'll meet many wonderful people who are ready, willing, and able to help you at any time. We have people with varying abilities, all willing to share. You've already been welcomed by one of our best, Becat! And you've been told about our wonderful Jumpy. And, if you just feel blue or just want to vent, we have ears to listen, shoulders to lean on, and, as Becat often says, "we'll row the boat for you".
Jan
You'll see where my bio is at the bottom of my post. Welcome to our family! I'm sorry you have RLS, but as Becat said, you've come to a wonderful place where you'll meet many wonderful people who are ready, willing, and able to help you at any time. We have people with varying abilities, all willing to share. You've already been welcomed by one of our best, Becat! And you've been told about our wonderful Jumpy. And, if you just feel blue or just want to vent, we have ears to listen, shoulders to lean on, and, as Becat often says, "we'll row the boat for you".
Jan
No one is alone who had friends.
Thank you, thank you, thank you!!!
Becat and Jan, thanks so much. I'm active on another medical support group, and I didn't intend to make you "reinvent the wheel" for me. It took me a minute to figure out what you both meant about the location of your bio information, but now that I've found it, how wonderful!!!! This is JUST the sort of details I'm anxious to know!!!!
I've not asked a doctor about RLS yet. I don't go to the doctor much (thankfully, I'm overall pretty healthy), and to tell the truth, I didn't realize for quite a while that this was a "syndrome" at all. A few years ago, I heard a friend mention it, and I immediately said, "Hmmmm, that sounds like that weird thing that happens to my legs and feet at night sometimes!" The more I read, and now the more symptoms/episodes I'm having, the more it sounds like RLS probably IS that problem. I need to go for a full physical again soon, so THIS time, I'll definitely bring it up (though I realize I may WELL be educating my docs!) My mother has a somewhat rare form of cancer, and I've been-there-done-that with bringing independent research to doctors' attentions!
The thing that most raised the red flag for me about RLS was that I remember the first time I said to myself, "I really have something weird going on here", rather than just assuming I was tired or something like that, was when I was about 18 and had the flu. During a two-hour ride in my (now) husband's car, my legs and feet were HORRIBLY uncomfortable. I HAD taken some sort of cold medicine, and it was the worst day of the flu with fever and aches. The first site I visited said RLS is often worse when we're sick or especially fatigued. I was BOTH, and it was horrid!
I occasionally had that creepy-crawly sensation in the evenings after that (and probably before, too, though that one night really sticks in my mind!) But I found that it seemed to be the sign for me that I needed to go to sleep. THANKFULLY, the creepy-crawlies didn't KEEP me from sleeping, and usually don't even yet. I find that laying down is much better than sitting on the couch or at the computre. Of course, walking is best of all. My feet, though, seem to be becoming more involved lately, and that is starting to really drive me a bit buggy! I was reading about the foot movements in sleep (PLMS or whatever the initials are?) and though I don't know if I do that or not, the way my feet feel sometimes, I think I might very WELL be doing it all night long.
Well, I didn't intend on including my bio here. I just really wanted to say THANK YOU, and how much I think it will help to read through the rest of the bios on the thread you directed me to. It sounds like RLS is likely what I have, and as it's getting worse, forearmed with knowledge is the best defense against the potential for "RLS Hopelessness" in the future, I believe. : ) Better run... my feet are getting twitchy as we speak... I wonder if it's worse because I currently don't have my normal computer chair and I'm typing on a hard stool??? Seems like I can't sit comfortably here for very long at ALL these days.
Thank you hugs to you both, and hello's to all other members! Sara
I've not asked a doctor about RLS yet. I don't go to the doctor much (thankfully, I'm overall pretty healthy), and to tell the truth, I didn't realize for quite a while that this was a "syndrome" at all. A few years ago, I heard a friend mention it, and I immediately said, "Hmmmm, that sounds like that weird thing that happens to my legs and feet at night sometimes!" The more I read, and now the more symptoms/episodes I'm having, the more it sounds like RLS probably IS that problem. I need to go for a full physical again soon, so THIS time, I'll definitely bring it up (though I realize I may WELL be educating my docs!) My mother has a somewhat rare form of cancer, and I've been-there-done-that with bringing independent research to doctors' attentions!
The thing that most raised the red flag for me about RLS was that I remember the first time I said to myself, "I really have something weird going on here", rather than just assuming I was tired or something like that, was when I was about 18 and had the flu. During a two-hour ride in my (now) husband's car, my legs and feet were HORRIBLY uncomfortable. I HAD taken some sort of cold medicine, and it was the worst day of the flu with fever and aches. The first site I visited said RLS is often worse when we're sick or especially fatigued. I was BOTH, and it was horrid!
I occasionally had that creepy-crawly sensation in the evenings after that (and probably before, too, though that one night really sticks in my mind!) But I found that it seemed to be the sign for me that I needed to go to sleep. THANKFULLY, the creepy-crawlies didn't KEEP me from sleeping, and usually don't even yet. I find that laying down is much better than sitting on the couch or at the computre. Of course, walking is best of all. My feet, though, seem to be becoming more involved lately, and that is starting to really drive me a bit buggy! I was reading about the foot movements in sleep (PLMS or whatever the initials are?) and though I don't know if I do that or not, the way my feet feel sometimes, I think I might very WELL be doing it all night long.
Well, I didn't intend on including my bio here. I just really wanted to say THANK YOU, and how much I think it will help to read through the rest of the bios on the thread you directed me to. It sounds like RLS is likely what I have, and as it's getting worse, forearmed with knowledge is the best defense against the potential for "RLS Hopelessness" in the future, I believe. : ) Better run... my feet are getting twitchy as we speak... I wonder if it's worse because I currently don't have my normal computer chair and I'm typing on a hard stool??? Seems like I can't sit comfortably here for very long at ALL these days.
Thank you hugs to you both, and hello's to all other members! Sara