HI - I JUST RAN ACROSS THIS WEBSITE WHILE I WAS LOOKING FOR HOME REMEDIES FOR LEG CRAMPS ON THE INTERNET. IT IS 4 IN THE MORNING AND ONCE AGAIN I AM WIDE AWAKE AND AFTER WALKING AROUND AND SOAKING IN WATER AS HOT AS I CAN STAND IT, I AM STILL ALL CRAMPED UP.
I WAS JUST DIAGNOSED WITH RLS LAST FALL. I DON'T REALLY KNOW MUCH ABOUT IT OTHER THAN WHAT MY DOCTOR TOLD ME - JUST GENERAL INFORMATION. I AM PRESCRIBED 2MG OF KLONOPIN THAT I AM SUPPOSED TO TAKE EVERY NIGHT - DOC SAYS THAT WILL CALM MY LEGS DOWN SO I CAN SLEEP. THE PROBLEM IS - IF I TAKE 2MG OF KLONOPIN AT NIGHT I CAN'T WAKE UP IN THE MORNING. I AM A PHARMACY STUDENT AND I HAVE A PHARMACOLOGY CLASS AT 8 IN THE MORNING SO I CAN'T DO THAT.
WHEN I TOLD THE DOC ABOUT THE PROBLEM WITH THE DOSE, HE SAID IT WAS PROBABLY BECAUSE I HAVE BEEN SO SLEEP DEPRIVED FOR SO MANY YEARS. HE ALSO TOLD ME TO INCREASE MY DOSE GRADUALLY UNTIL I CAN TOLERATE IT.
OF COURSE, THE PROBLEM RIGHT NOW IS THAT I AM APPARENTLY NOT TAKING ENOUGH OF THE DRUG TO GET THE WANTED EFFECT. DOES ANYONE HAVE ANY GOOD SUGGESTIONS FOR DEALING WITH THE CRAMPING THAT I WILL BE PUTTING UP WITH IN THE MEANTIME?
THIS LOOKS LIKE A REALLY NICE SITE - I READ THROUGH A FEW OF THE RECENT POSTS. I WOULD LOVE TO TALK TO ANYONE ABOUT SUGGESTIONS DEALING WITH RLS AS WELL AS ANY YOUNGER PEOPLE OUT THERE - I AM 28 YEARS OLD AND IT SEEMS THAT MOST OF THE INFORMATION I HAVE FOUND ON THE INTERNET IS ABOUT RLS AND ELDELY PATIENTS. MAYBE I AM LOOKING IN THE WRONG PLACE - I THOUGHT RLS COULD AFFECT ANYBODY???
THANKS IN ADVANCE FOR ANY OF YOUR SUGGESTIONS.
BARB[/b]
I am new to RLS - or new to the diagnosis anyway!
Hi, Barb, and welcome!
Sorry you're suffering, but I think you'll find a lot of the information and support you're looking for here. I sure have.
There are two kinds of RLS-- primary, which means you got it genetically, and secondary, which seems to occur after an illness, injury, or medication (that sort of thing). But primary RLS is progressive in basic nature, so everyone I know with it has experienced more symptoms, more episodes and/or more severity as they've aged. For some here, RLS was already agony when they were kids; for others of us, it wasn't until we got older that it really began to bother us. And in BOTH cases, a lot of us never knew what the PROBLEM was... that it was an actual condition or syndrome. I personally always just said to myself... This happens when I'm overtired or sick; must be time for bed.
So, you're not alone at ALL in having troubles at your age. The first really classic RLS episode I remember having was when I was 18, and that was when I was suffering from a horrible flu (is yours worse when you're sick or overtired? it is for many of us here.) But it was in my late 20s and early 30s when I really recognized the "pattern" of my symptoms. And then about 3-4 years ago, I heard a friend say something about RLS. I'd never heard the phrase before. And I was shocked! She's in her 60s and was complaining to a friend in her 70s... and I said, "Oh, my gosh, I think I have that!!!!" It was a relief to see that there was a name for this, and I wasn't the only oddball in the world who couldn't stand to sit on the couch and watch a movie with her husband at night.
When I first came here, it was during a really bad couple months of symptoms, becuase I wanted to know about patterns of progression, how bad it might eventually get, and what I might be able to do about it when my own strategies started to fail. My symptoms actually calmed down a little again after that, but my RLS is pretty much a daily thing. I also now know that our younger son (12 years old) has it too.... and suspect that my husband also has a mild case of RLS with PLMD, actually, though he's not convinced. He thinks that everyone's feet jerk when they're tired in the evenings.
Anyway, I'm not on medications, Barb, so I can't really advise you. But I wondered if there was any way you could adjust the timing for taking the Klonopin or something like that to make mornings easier? Several people on this forum take it or have taken it, so someone who knows something will likely find your message and give you some legitimate advice. But that was the first thing that came to my mind.
At any rate, again, welcome!!! and I wish you all the best.
Sara
Sorry you're suffering, but I think you'll find a lot of the information and support you're looking for here. I sure have.
There are two kinds of RLS-- primary, which means you got it genetically, and secondary, which seems to occur after an illness, injury, or medication (that sort of thing). But primary RLS is progressive in basic nature, so everyone I know with it has experienced more symptoms, more episodes and/or more severity as they've aged. For some here, RLS was already agony when they were kids; for others of us, it wasn't until we got older that it really began to bother us. And in BOTH cases, a lot of us never knew what the PROBLEM was... that it was an actual condition or syndrome. I personally always just said to myself... This happens when I'm overtired or sick; must be time for bed.
So, you're not alone at ALL in having troubles at your age. The first really classic RLS episode I remember having was when I was 18, and that was when I was suffering from a horrible flu (is yours worse when you're sick or overtired? it is for many of us here.) But it was in my late 20s and early 30s when I really recognized the "pattern" of my symptoms. And then about 3-4 years ago, I heard a friend say something about RLS. I'd never heard the phrase before. And I was shocked! She's in her 60s and was complaining to a friend in her 70s... and I said, "Oh, my gosh, I think I have that!!!!" It was a relief to see that there was a name for this, and I wasn't the only oddball in the world who couldn't stand to sit on the couch and watch a movie with her husband at night.
When I first came here, it was during a really bad couple months of symptoms, becuase I wanted to know about patterns of progression, how bad it might eventually get, and what I might be able to do about it when my own strategies started to fail. My symptoms actually calmed down a little again after that, but my RLS is pretty much a daily thing. I also now know that our younger son (12 years old) has it too.... and suspect that my husband also has a mild case of RLS with PLMD, actually, though he's not convinced. He thinks that everyone's feet jerk when they're tired in the evenings.
Anyway, I'm not on medications, Barb, so I can't really advise you. But I wondered if there was any way you could adjust the timing for taking the Klonopin or something like that to make mornings easier? Several people on this forum take it or have taken it, so someone who knows something will likely find your message and give you some legitimate advice. But that was the first thing that came to my mind.
At any rate, again, welcome!!! and I wish you all the best.
Sara
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ViewsAskew
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Barb, so sorry you are having problems with the meds. There is a great algorithm for treating RLS and Klonipin is not the first thing to try. It's one of the oldest meds used, however, so some docs that are not really current may prescribe it first.
Please look at these threads and they have links to the algorithm and lots of other help. As a pharmacy student, what a great opportunity you have in the future to help lots of people!!!! My pharmacist loves to chat with me to learn more about interactions, new drugs, etc.
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=549
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=94
Klonipin has a VERY long half-life. If you do find a benzo helps, try one that has a shorter half life like temazepam. The rlshelp.org site will help you evaluate them. The algorithm will help you find a better option. The articles may help you and your doctor figure out better ways to treat you.
Oh, if it's not in there, first things first: have your ferritin levels checked. If below 40 to 50, then in conjunction with your doctor, bring it up with iron therapy. You may find a lessening of symptoms.
Of course, I'm no doc and this is all just my personal opinion.
Ann
Please look at these threads and they have links to the algorithm and lots of other help. As a pharmacy student, what a great opportunity you have in the future to help lots of people!!!! My pharmacist loves to chat with me to learn more about interactions, new drugs, etc.
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=549
http://www.restlesslegs.org/phpBB2/viewtopic.php?t=94
Klonipin has a VERY long half-life. If you do find a benzo helps, try one that has a shorter half life like temazepam. The rlshelp.org site will help you evaluate them. The algorithm will help you find a better option. The articles may help you and your doctor figure out better ways to treat you.
Oh, if it's not in there, first things first: have your ferritin levels checked. If below 40 to 50, then in conjunction with your doctor, bring it up with iron therapy. You may find a lessening of symptoms.
Of course, I'm no doc and this is all just my personal opinion.
Ann
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umpwidow
My mom gets the leg cramps. She takes calcium, magnesium and quinine ?sp?. Personally, I take 1000mg magnesium and 750mg calcium in the morning and then again 1 hour before bed. My ferritin levels aren't low, but I do take 29mg iron every day, every other week (opinions are mixed right now on iron and normal ferritin levels). I also take 800mcg of B12mcg everyday and 150 mg B6. I take these as a multi-vitamin, calcium/mag supplement, herbal sleep aid with valerian and magnesium and an iron supplement. Mom still swears by the cal/mag and quinine for the cramps.
Hope you find something that works for you.
Jamie
Hope you find something that works for you.
Jamie
Hi Barb
Hi Barb and Welcome.
You've gotten answers from good people already but something you said perfect hit me between the eyes.
"THIS LOOKS LIKE A REALLY NICE SITE - I READ THROUGH A FEW OF THE RECENT POSTS. I WOULD LOVE TO TALK TO ANYONE ABOUT SUGGESTIONS DEALING WITH RLS AS WELL AS ANY YOUNGER PEOPLE OUT THERE - I AM 28 YEARS OLD AND IT SEEMS THAT MOST OF THE INFORMATION I HAVE FOUND ON THE INTERNET IS ABOUT RLS AND ELDELY PATIENTS. MAYBE I AM LOOKING IN THE WRONG PLACE - I THOUGHT RLS COULD AFFECT ANYBODY??? "
This is my point exactly. RLS is not an age. It's not a sex. It's across the board, with the seemingly, exception of a few ethnic populations. It's kids. Young adults. It's those of us in our 30's, 40's, and 50's. It is found in older people, but that's simply not the scope of it.
When I and a few other from this site went to the RLS National Meeting last year in Long Beach I was blown away. WE, meaning this RLS community, are not well represented. There we more older people there. We're talking 60, 70, 80 yrs. old. Our group from the board was a good cross section of ages, but overall, not what we see here on the site.
Sara, is right if your blessed with this genetically, you've already been educated about living with it. The best thing you can do is Educate yourself about how the medical world see it. Then come here and read how the RLSers see it......Live with it. There's a difference in how they match up. It's important to know that your just a bit different in symptoms and will be in treatment as well. There is no across the board treatment for all of us.
Knowing the medications is a great thing. You have to decide with a doctor that works with you how to proceed in treatment. It's normally a combination of medications and non-medicine things that work for most.
Time and trial is what it may take. If your doctor isn't helping ditch him/her and find someone that will.
All three of the post before me have many great tips. Most of all the show the best we really offer around here....support. We with ya. I agree with Ann, check you blood work.
Keep strong and I hope things ease soon.
You've gotten answers from good people already but something you said perfect hit me between the eyes.
"THIS LOOKS LIKE A REALLY NICE SITE - I READ THROUGH A FEW OF THE RECENT POSTS. I WOULD LOVE TO TALK TO ANYONE ABOUT SUGGESTIONS DEALING WITH RLS AS WELL AS ANY YOUNGER PEOPLE OUT THERE - I AM 28 YEARS OLD AND IT SEEMS THAT MOST OF THE INFORMATION I HAVE FOUND ON THE INTERNET IS ABOUT RLS AND ELDELY PATIENTS. MAYBE I AM LOOKING IN THE WRONG PLACE - I THOUGHT RLS COULD AFFECT ANYBODY??? "
This is my point exactly. RLS is not an age. It's not a sex. It's across the board, with the seemingly, exception of a few ethnic populations. It's kids. Young adults. It's those of us in our 30's, 40's, and 50's. It is found in older people, but that's simply not the scope of it.
When I and a few other from this site went to the RLS National Meeting last year in Long Beach I was blown away. WE, meaning this RLS community, are not well represented. There we more older people there. We're talking 60, 70, 80 yrs. old. Our group from the board was a good cross section of ages, but overall, not what we see here on the site.
Sara, is right if your blessed with this genetically, you've already been educated about living with it. The best thing you can do is Educate yourself about how the medical world see it. Then come here and read how the RLSers see it......Live with it. There's a difference in how they match up. It's important to know that your just a bit different in symptoms and will be in treatment as well. There is no across the board treatment for all of us.
Knowing the medications is a great thing. You have to decide with a doctor that works with you how to proceed in treatment. It's normally a combination of medications and non-medicine things that work for most.
Time and trial is what it may take. If your doctor isn't helping ditch him/her and find someone that will.
All three of the post before me have many great tips. Most of all the show the best we really offer around here....support. We with ya. I agree with Ann, check you blood work.
Keep strong and I hope things ease soon.
Hi Barb--Welcome
It's Jan
I don't know if you've read any of my posts, are not. I haven't been as active lately as I was. However, I have had RLS for 25+ years and have primary RLS. My RLS progressed slowly until I was in my mid-30's.
I am currently on 5 mgs. Mirapex and 1 mg. Klonopin. I was on 2 mgs. Klonopin, but--as Ann said--it has a long life and I was falling asleep driving. NOT A GOOD THING! My doctor decreased my dosage of Klonopin because of that. I have what I would consider a severe case of RLS. It affects my ability to watch a movie in a theater, ride in a car, even sit in a chair very long at home--unless I'm medicated. Even then, I have "breakthrough" episodes.
Personally, I have found Klonopin to be very helpful. I have been on a series of different drugs over the past years and Klonopin seems to be good for ME. But, as Becat said, it's totally individual--RLS AND treatment. You and your doctor have to come up with the right combination. And, like Becat said, education is your best offense.
Before I became a member of this forum, I knew I had RLS and it had to be treated. That's about as far as it got. Now, I KNOW what RLS is--not just how I feel--but what helps, hinders, and I read about every medication I'm on or am about to be put on.
As you can see, this is a great site for support, information and discussion. I'm so glad you found us, but so sorry you have RLS. It's not the end of the world. BUT, it does effect your world (very often dramatically) and this site is a wealth of information! We are a family here. You've found a home!
Good luck!
Jan
I don't know if you've read any of my posts, are not. I haven't been as active lately as I was. However, I have had RLS for 25+ years and have primary RLS. My RLS progressed slowly until I was in my mid-30's.
I am currently on 5 mgs. Mirapex and 1 mg. Klonopin. I was on 2 mgs. Klonopin, but--as Ann said--it has a long life and I was falling asleep driving. NOT A GOOD THING! My doctor decreased my dosage of Klonopin because of that. I have what I would consider a severe case of RLS. It affects my ability to watch a movie in a theater, ride in a car, even sit in a chair very long at home--unless I'm medicated. Even then, I have "breakthrough" episodes.
Personally, I have found Klonopin to be very helpful. I have been on a series of different drugs over the past years and Klonopin seems to be good for ME. But, as Becat said, it's totally individual--RLS AND treatment. You and your doctor have to come up with the right combination. And, like Becat said, education is your best offense.
Before I became a member of this forum, I knew I had RLS and it had to be treated. That's about as far as it got. Now, I KNOW what RLS is--not just how I feel--but what helps, hinders, and I read about every medication I'm on or am about to be put on.
As you can see, this is a great site for support, information and discussion. I'm so glad you found us, but so sorry you have RLS. It's not the end of the world. BUT, it does effect your world (very often dramatically) and this site is a wealth of information! We are a family here. You've found a home!
Good luck!
Jan
No one is alone who had friends.
never been diagnosed
Hi
i'm not sure if i have RLS'since the age of 18ish (i'm 39 now), i have been having painful twitching and jerking in the lower part of my legs, i have to get up and move around for a while mainly in the night time, i have actually been reduced to tears because i've been so tired, i went to my GP a few years ago he had never heard of anything like it, he made me feel as if i was wasting his time and looking for attention.
In the past few months i've started to get the same sensation in my left arm, i really hope it's not connected.
I'm happy that i have found somewhere were i can come and read and talk to other people with the same problem i seem to have.
Jenny
i'm not sure if i have RLS'since the age of 18ish (i'm 39 now), i have been having painful twitching and jerking in the lower part of my legs, i have to get up and move around for a while mainly in the night time, i have actually been reduced to tears because i've been so tired, i went to my GP a few years ago he had never heard of anything like it, he made me feel as if i was wasting his time and looking for attention.
In the past few months i've started to get the same sensation in my left arm, i really hope it's not connected.
I'm happy that i have found somewhere were i can come and read and talk to other people with the same problem i seem to have.
Jenny
Hi, Jenny---
Of COURSE you were looking for attention... your DOCTOR's attention because you were very uncomfortable and you expect a doctor to care and try to help.
Ironically, your story sounds simlar to mine in some ways. The earliest memory I have that I'm SURE was RLS was 18 and I'm also 39 now. Mine's mostly in my feet, but also sometimes my lower legs (and lately, my knees... oh, fun!
) There are other folks here who get the sensations in their arms, so that doesn't sound unusual either.
One of the big keys to knowing it's RLS is if you move around and it feels better. I stand, walk, wiggle, jiggle, press, pound, rub, and press with my feet when my RLS is bad... and it helps some anyway. Better than trying to remain still.
Welcome to the group. Wish you weren't having this problem, but we here sure understand and empathize! Take care.
Sara
Of COURSE you were looking for attention... your DOCTOR's attention because you were very uncomfortable and you expect a doctor to care and try to help.
Ironically, your story sounds simlar to mine in some ways. The earliest memory I have that I'm SURE was RLS was 18 and I'm also 39 now. Mine's mostly in my feet, but also sometimes my lower legs (and lately, my knees... oh, fun!
) There are other folks here who get the sensations in their arms, so that doesn't sound unusual either.
One of the big keys to knowing it's RLS is if you move around and it feels better. I stand, walk, wiggle, jiggle, press, pound, rub, and press with my feet when my RLS is bad... and it helps some anyway. Better than trying to remain still.
Welcome to the group. Wish you weren't having this problem, but we here sure understand and empathize! Take care.
Sara
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Kristina
Hi Barb,
I, too, am a college student. I'm 20 years old and have had RLS as long as I can remember, but it has gotten increasingly worse in the past five years or so. It is now to the point where I can barely sit through an entire lecture period without wanting to jump up and run around the room.
Stretching sometimes helps, sometimes doesn't. Also, cutting out caffiene from your diet may help too. I avoid drinking caffiene at least 5 or so hours before bed. Same with sugar.
Good luck, I hope it gets better for you!
I, too, am a college student. I'm 20 years old and have had RLS as long as I can remember, but it has gotten increasingly worse in the past five years or so. It is now to the point where I can barely sit through an entire lecture period without wanting to jump up and run around the room.
Stretching sometimes helps, sometimes doesn't. Also, cutting out caffiene from your diet may help too. I avoid drinking caffiene at least 5 or so hours before bed. Same with sugar.
Good luck, I hope it gets better for you!
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