What do you think CAUSED yoiur RLS?
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ticky
I guess I have primary, but it didnt rear its ugly head till I had a pulmonary embolis about 7 years ago. All kinds of stuff showed up after that, but rls was one of the "special" gifts from it, as was asthma and epidemea. My father has rls pretty badly and has as long as I can remember. So I guess Im a little of both worlds?
Mind if I join in?
It's Jan
I just found this thread. I'm positive my RLS is primary. I've had RLS most of my life an I'm positive I inherited the gene from my father, who passed away in 1979. I remember my father having "trouble" with his legs. He would pace back and forth, and complain about his legs hurting all the time. I never thought anything of it. Of course, I was just a kid.
I remember my mother telling me that I had "ants in my pants"--always telling me to stand or sit still. And I remember nights in my bed, tossing and turning, trying to get comfortable. So, RLS has been always been my enemy.
Jan
I just found this thread. I'm positive my RLS is primary. I've had RLS most of my life an I'm positive I inherited the gene from my father, who passed away in 1979. I remember my father having "trouble" with his legs. He would pace back and forth, and complain about his legs hurting all the time. I never thought anything of it. Of course, I was just a kid.
I remember my mother telling me that I had "ants in my pants"--always telling me to stand or sit still. And I remember nights in my bed, tossing and turning, trying to get comfortable. So, RLS has been always been my enemy.
Jan
No one is alone who had friends.
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RestlessNGa
- Posts: 13
- Joined: Tue May 17, 2005 7:17 pm
- Location: Where ever I'm planted
Is it possible that lesions on the brain can attribute to this? I ask because I do have lesions, but the good ole brain doc says...nothing to worry about.
Then again its not his brain!!
I was in a car accident several years ago...I also have a bulging disc in my neck.
I don't know that it runs in the family that I can find. I am not sure why, and I am not totally convinced this is the primary problem...but then I don't have a medical degree.
I think all these could play a role, however, since it does seem to be a neuropathy disorder.
Meds
Injury
Heredity
Other medical causes(spinal surgery,etc)
Patricia
Then again its not his brain!!
I was in a car accident several years ago...I also have a bulging disc in my neck.
I don't know that it runs in the family that I can find. I am not sure why, and I am not totally convinced this is the primary problem...but then I don't have a medical degree.
I think all these could play a role, however, since it does seem to be a neuropathy disorder.
Meds
Injury
Heredity
Other medical causes(spinal surgery,etc)
Patricia
I'm fairly certain that my RLS is related to my thyroid disorder, however, I'm not sure. After I was diagnosed with cancer at age 9, alot of strange things went wrong with my body.
Due to my thyroid however, my long term memory is quite horrible, so I can not for the life of me remember when my RLS started, which makes it harder to associate it with the time I was diagnosed with an underactive thyroid.
Due to my thyroid however, my long term memory is quite horrible, so I can not for the life of me remember when my RLS started, which makes it harder to associate it with the time I was diagnosed with an underactive thyroid.
Primary
I have primary was caused from both my parents and my grandmother. 
really stinks to have though
really stinks to have thoughJan 
Can't wait to sleep!
Can't wait to sleep!Just a quick question here, about primary vs. secondary RLS.
I am sure I have primary, because my family seems to have it on both sides, I've not had any injuries to start/exacerbate it, and I've not been on any meds that could have triggered it (at least not at any time that makes sense compared to my RLS history.)
But I have to wonder a bit about some of the secondary cases, based on my own experience... and I wonder if anyone else has thought about this at all.
The first bad RLS episode I remember was when I was 18, sick with the flu, taking Nyquil. I've told the story often here. CLASSIC RLS in all ways. I know I HAD episodes of RLS after that, often when I had the flu or was over-tired, but since they followed no particular rhyme or reason (that I RECOGNIZED at that time since I had never HEARD of RLS), I don't recall the details.
It wasn't until I was in my 30s, I think, that I really realized that I was having these strange sensations chronically. But even then, I did not think in terms of a "medical condition"... the intermittent (though increasingly troublesome) episodes still seemed pretty idiosyncratic. "My" foot thing... not something anyone else was wiggling and pressing and bouncing and rubbing their way through nightly.
Had I not accidentally heard about RLS from another sufferer on a medical support board I happened to be on for my mother for a totally different issue, who knows how much longer I might have gone without hearing about RLS or researching my nightly symptoms????
As usual, I'm going on and on, but here's my point. UNLESS you're aware of a specific condition because of someone else in your family having it... or unless it's troubling enough for you to seek medical advice/diagnosis (and we all KNOW how well THAT works out sometimes with a condition like this)... don't you think that most of us tend to just "live in the body we're given"?
I mean, what life is like is partly determined by the characteristics of the "us" that we're born with. So we all "experience" things differently, and often we just assume that what we feel is "normal for us" at least, even if it's not something others ever speak of.
And in fact, I think that one reason I'd NEVER heard ANYONE in my family talk about their foot/leg problems until I came to THEM ASKING about RLS is because they never THOUGHT to speak of it. I had never really talked about my "foot thing" with anyone but my husband, and only with HIM, because it was increasingly sending me to bathe and to bed earlier than I would have preferred to go. My grandparents, especially, were sort of stoic people, so I'm sure it never occured to them to mention that the reason they got up and walked around at weird times, the reason Grandma massaged Gramps' legs at night, etc. was because they had "weird sensations"... or even pain.
My point is only this.... I only REMEMBER SPECIFIC RLS episodes from 18 on. But I know I had trouble getting to sleep my whole life. My folks never imposed a "lights-out" for me, because I couldn't get to sleep laying quietly in a dark room. I always read and fell asleep and my dad would come turn out the light. I also know that I was fidgety enough to bother my mom at times, and be reprimanded for it. I did have growing pains in my legs.
And now, our 12 year old seems to have OBVIOUS RLS... but HE mentioned it because he's heard ME talk about MINE. He didn't think he had it at first, so it wasn't a "monkey-see-monkey-do". He was actually asking becuase he was "sure that wasn't it". But now that he's talking about the PATTERN of the weird feelings he has in his legs, he and I agree it sounds like pretty classic RLS. I worry now that he seems to have it so young... but I FRANKLY WOULD NOT REMEMBER that sort of thing from my childhood, I'm pretty sure. I was just living in the body I was given.
And since RLS is notoriously progressive, if primary RLS is NOT exacerbated by injury, meds, etc., at an early age--or doesn't occur in a household familiar with RLS symptoms-- doesn't it seem possible (or even likely?) that early primary RLS symptoms would NOT be something that "comes up on our personal medical radar"? That they'd be attributed to over-tired, illness, growing pains, out-of-shape, physical weakness, etc?
When my episodes were farther apart, I know I "remembered" the sensations from RLS as "familiar"... but I never really said to myself, "Hmmmm... the last time that happened was this time of day, when I had the flu and/or was taking medication, lasted this long, went away in the morning.... " etc. I didn't put two and two together until my 30s when I was having RLS quite a few evenings. And didn't REALLY notice the patterns too well until I heard about RLS by accident and researched it. When it started bothering me sometimes 24/7, I found this list.... and started interviewing family (and friends) about it.... and that put the rest of the pieces together for ME.
But if I'd not HAPPENED to hear the name RLS... who knows how long I would have just thought it was "me"... and by then, who knows how clear or unclear my recollection of possible early symptoms might be.
Anyone agree or disagree?
Take care-- Sara
I am sure I have primary, because my family seems to have it on both sides, I've not had any injuries to start/exacerbate it, and I've not been on any meds that could have triggered it (at least not at any time that makes sense compared to my RLS history.)
But I have to wonder a bit about some of the secondary cases, based on my own experience... and I wonder if anyone else has thought about this at all.
The first bad RLS episode I remember was when I was 18, sick with the flu, taking Nyquil. I've told the story often here. CLASSIC RLS in all ways. I know I HAD episodes of RLS after that, often when I had the flu or was over-tired, but since they followed no particular rhyme or reason (that I RECOGNIZED at that time since I had never HEARD of RLS), I don't recall the details.
It wasn't until I was in my 30s, I think, that I really realized that I was having these strange sensations chronically. But even then, I did not think in terms of a "medical condition"... the intermittent (though increasingly troublesome) episodes still seemed pretty idiosyncratic. "My" foot thing... not something anyone else was wiggling and pressing and bouncing and rubbing their way through nightly.
Had I not accidentally heard about RLS from another sufferer on a medical support board I happened to be on for my mother for a totally different issue, who knows how much longer I might have gone without hearing about RLS or researching my nightly symptoms????
As usual, I'm going on and on, but here's my point. UNLESS you're aware of a specific condition because of someone else in your family having it... or unless it's troubling enough for you to seek medical advice/diagnosis (and we all KNOW how well THAT works out sometimes with a condition like this)... don't you think that most of us tend to just "live in the body we're given"?
I mean, what life is like is partly determined by the characteristics of the "us" that we're born with. So we all "experience" things differently, and often we just assume that what we feel is "normal for us" at least, even if it's not something others ever speak of.
And in fact, I think that one reason I'd NEVER heard ANYONE in my family talk about their foot/leg problems until I came to THEM ASKING about RLS is because they never THOUGHT to speak of it. I had never really talked about my "foot thing" with anyone but my husband, and only with HIM, because it was increasingly sending me to bathe and to bed earlier than I would have preferred to go. My grandparents, especially, were sort of stoic people, so I'm sure it never occured to them to mention that the reason they got up and walked around at weird times, the reason Grandma massaged Gramps' legs at night, etc. was because they had "weird sensations"... or even pain.
My point is only this.... I only REMEMBER SPECIFIC RLS episodes from 18 on. But I know I had trouble getting to sleep my whole life. My folks never imposed a "lights-out" for me, because I couldn't get to sleep laying quietly in a dark room. I always read and fell asleep and my dad would come turn out the light. I also know that I was fidgety enough to bother my mom at times, and be reprimanded for it. I did have growing pains in my legs.
And now, our 12 year old seems to have OBVIOUS RLS... but HE mentioned it because he's heard ME talk about MINE. He didn't think he had it at first, so it wasn't a "monkey-see-monkey-do". He was actually asking becuase he was "sure that wasn't it". But now that he's talking about the PATTERN of the weird feelings he has in his legs, he and I agree it sounds like pretty classic RLS. I worry now that he seems to have it so young... but I FRANKLY WOULD NOT REMEMBER that sort of thing from my childhood, I'm pretty sure. I was just living in the body I was given.
And since RLS is notoriously progressive, if primary RLS is NOT exacerbated by injury, meds, etc., at an early age--or doesn't occur in a household familiar with RLS symptoms-- doesn't it seem possible (or even likely?) that early primary RLS symptoms would NOT be something that "comes up on our personal medical radar"? That they'd be attributed to over-tired, illness, growing pains, out-of-shape, physical weakness, etc?
When my episodes were farther apart, I know I "remembered" the sensations from RLS as "familiar"... but I never really said to myself, "Hmmmm... the last time that happened was this time of day, when I had the flu and/or was taking medication, lasted this long, went away in the morning.... " etc. I didn't put two and two together until my 30s when I was having RLS quite a few evenings. And didn't REALLY notice the patterns too well until I heard about RLS by accident and researched it. When it started bothering me sometimes 24/7, I found this list.... and started interviewing family (and friends) about it.... and that put the rest of the pieces together for ME.
But if I'd not HAPPENED to hear the name RLS... who knows how long I would have just thought it was "me"... and by then, who knows how clear or unclear my recollection of possible early symptoms might be.
Anyone agree or disagree?
Take care-- Sara
What caused your RLS?
Two comments:
1. I think my RLS came from drinking 3 cokes a day in my early 20's. I have read that phosphoric acid in pop competes with, and may even block out (permanently?) calcium. Calcium is very important in muscle movement AND transmission of neural impulses.
Anyone else, a pop junkee?
2. Also, mine started with my first pregnancy too. Only I never had an epidural, in fact I had NO PAIN medication of any kind! But I still got RLS!
I have a few ideas. See my other posts!
Athena
1. I think my RLS came from drinking 3 cokes a day in my early 20's. I have read that phosphoric acid in pop competes with, and may even block out (permanently?) calcium. Calcium is very important in muscle movement AND transmission of neural impulses.
Anyone else, a pop junkee?
2. Also, mine started with my first pregnancy too. Only I never had an epidural, in fact I had NO PAIN medication of any kind! But I still got RLS!
I have a few ideas. See my other posts!
Athena
RLS in the family
What I see by reading posts here is that everyone had RLS early in life, definitely by early 20's. And everyone is trying to relate it to something that happened in their life at that time. For each person, it is a different thing.
I am beginning to believe it is genetic.
I am working on an idea. I have Greek ancestors. Thalassemia runs in my family, so does RLS. Does anyone else have Greek, Italian, Asian, or Mediterranean ancestors?
I ask because 2 million Americans are silent carriers of thalassemia genes. If you are a silent carrier you would never know it.
Thanks, Athena
I am beginning to believe it is genetic.
I am working on an idea. I have Greek ancestors. Thalassemia runs in my family, so does RLS. Does anyone else have Greek, Italian, Asian, or Mediterranean ancestors?
I ask because 2 million Americans are silent carriers of thalassemia genes. If you are a silent carrier you would never know it.
Thanks, Athena
Hi, Athena--
Nice to "meet" you. Got your PM and then saw your post here, too.
Let me clarify my point from earlier. There's NO question that "primary" RLS is genetic... and I'm pretty sure (someone smarter will confirm or contradict) that primary RLS is the most common type. So, YUP, you're absolutely right to look to genetics.
The point I was actually trying to make was that it seems like it would be hard to know for sure if "secondary" RLS is REALLY "caused" by the med, pregnancy, injury, surgery, etc... rather than just "exacerbated" by it. Our Becat, I believe, is a good example of a genetic cause of RLS exacerbated by injury and pumped up to an inhuman level. But if you didn't know what RLS was before the secondary "cause", you just might not "notice" it specifically until it gets too bad to ignore, if you will.
Anyway, Athena, I'm glad you posted your question here; I was going to suggest that you do that. I think that we've discussed ethnic heritage a couple of times in the past, and perhaps it's also on the surveys that Jumpyowl has been compiling? Can't recall. I think it's a useful discussion to have.
Unfortunately, I, my son, my family, my brother-in-law, and three friends who are not members here that have RLS are all from northern/western European descent, so none of us falls into any of the ethnic origins you mentioned. So I can't help you there.
What is the gene you mentioned, though??? Is there something specific about thalessemia that might indicate a connection to RLS? or are you asking only because your family carries both? (And you said you could be a silent carrier and not know? So how do you find out?)
Great question, Athena and welcome to the group!
Sara
Nice to "meet" you. Got your PM and then saw your post here, too.
Let me clarify my point from earlier. There's NO question that "primary" RLS is genetic... and I'm pretty sure (someone smarter will confirm or contradict) that primary RLS is the most common type. So, YUP, you're absolutely right to look to genetics.
The point I was actually trying to make was that it seems like it would be hard to know for sure if "secondary" RLS is REALLY "caused" by the med, pregnancy, injury, surgery, etc... rather than just "exacerbated" by it. Our Becat, I believe, is a good example of a genetic cause of RLS exacerbated by injury and pumped up to an inhuman level. But if you didn't know what RLS was before the secondary "cause", you just might not "notice" it specifically until it gets too bad to ignore, if you will.
Anyway, Athena, I'm glad you posted your question here; I was going to suggest that you do that. I think that we've discussed ethnic heritage a couple of times in the past, and perhaps it's also on the surveys that Jumpyowl has been compiling? Can't recall. I think it's a useful discussion to have.
Unfortunately, I, my son, my family, my brother-in-law, and three friends who are not members here that have RLS are all from northern/western European descent, so none of us falls into any of the ethnic origins you mentioned. So I can't help you there.
What is the gene you mentioned, though??? Is there something specific about thalessemia that might indicate a connection to RLS? or are you asking only because your family carries both? (And you said you could be a silent carrier and not know? So how do you find out?)
Great question, Athena and welcome to the group!
Sara
Sara,
I am working on several ideas about RLS. Here's one of them:
Basically anything leading to decreased oxygen delivery to your tissues causes RLS:
1. old age - decreased circulation
2. sitting - "
3. low blood pressure - "
4. pregnancy - "
5. low hemoglobin
6. salty foods or alcohol - act as diuretics and decrease blood volume
etc.... etc...
Thalassemia is a gene found in all European populations, however it is found more often in the ethnic groups I mentioned. Historically it protected people from malaria. It leads to defective hemoglobin. Your hemoglobin is responsible for carrying your oxygen. Oxygen is critical for energy production in your body. 2 million people are silent carriers. I think a silent carrier can have reduced hemoglobin(Hg) capacity (one defective Hg subunit) and not have disease symptoms. (You have 4 units of hemoglobin per red blood cell)
I am thinking, what if people have reduced Hg capacity but don't know it?
A woman's Hg level should be 12 - 16 g/dl.
When mine falls below 13 my RLS goes bonkers! Yet it is not a medical problem, not something my Dr. would treat me for.
Does that make sense or am I rattling on?
Athena
I am working on several ideas about RLS. Here's one of them:
Basically anything leading to decreased oxygen delivery to your tissues causes RLS:
1. old age - decreased circulation
2. sitting - "
3. low blood pressure - "
4. pregnancy - "
5. low hemoglobin
6. salty foods or alcohol - act as diuretics and decrease blood volume
etc.... etc...
Thalassemia is a gene found in all European populations, however it is found more often in the ethnic groups I mentioned. Historically it protected people from malaria. It leads to defective hemoglobin. Your hemoglobin is responsible for carrying your oxygen. Oxygen is critical for energy production in your body. 2 million people are silent carriers. I think a silent carrier can have reduced hemoglobin(Hg) capacity (one defective Hg subunit) and not have disease symptoms. (You have 4 units of hemoglobin per red blood cell)
I am thinking, what if people have reduced Hg capacity but don't know it?
A woman's Hg level should be 12 - 16 g/dl.
When mine falls below 13 my RLS goes bonkers! Yet it is not a medical problem, not something my Dr. would treat me for.
Does that make sense or am I rattling on?
Athena
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Ann-Marie
I have that too
i too have rls and beleive it is a result of an epidurel i received when i had my son. I have had nothing but complications scince then and just recently have had to have back surgery due to problems with with it as well. I was on so many meds that after i was no longer to be on them i went through a bad depression and withdraw. I still have rls and am not able to sleep at night at all and find it very hard to relax with my legs the way they are. If anyone has any suggestions that maybe of use to me for sleeping with it or calming my legs it would be much appreciated. you can post a reply or email me at hugzabunchez@yahoo.com.
Primary Here
Have to join the primary/familial club on this topic.
At least three people in each generation on my mother's father's side has had some degree of RLS; and it's gotten progressively worse with each generation too
I know I had RLS as a kid, remember it as clear as day ... then it went into hiding ... only to reappear as a result of gawd knows what back in June/July 2003.
BTW, I don't have PLMD ... something which the sleep study doctor thought was rather odd ... but hey ... someone has to buck the trend!
At least three people in each generation on my mother's father's side has had some degree of RLS; and it's gotten progressively worse with each generation too
I know I had RLS as a kid, remember it as clear as day ... then it went into hiding ... only to reappear as a result of gawd knows what back in June/July 2003.
BTW, I don't have PLMD ... something which the sleep study doctor thought was rather odd ... but hey ... someone has to buck the trend!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
Nadia,
I don't believe that I have PLMD either, actually. I think my husband does (and very mild RLS, though he insists "everyone's feet do that when they get tired."
Hubby's never noticed limb movement, and I don't have the kind of messed up sheets, tired legs, etc. that PLMD folks seem to have, either.
Sara
I don't believe that I have PLMD either, actually. I think my husband does (and very mild RLS, though he insists "everyone's feet do that when they get tired."
Hubby's never noticed limb movement, and I don't have the kind of messed up sheets, tired legs, etc. that PLMD folks seem to have, either.
Sara