RSD and Tremors
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RSD and Tremors
byrd45 Mon Jan 05, 2009 6:58 pm
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From: byrd45 (Original Message) Sent: 8/18/2005 8:12 AM
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 4/13/2005 9:54 PM
Sent: 10/25/2004 8:06 PM
HI Everyone,
This week I thought we could discuss RSD and Tremors. Sometimes a person with RSD can have severe tremors these can happen in any extremity and in my case in my neck and hands. Luckily mine are intermitent and I handle it the best I can when they do happen. The neck tremors hurt so bad and are a sign that I have agravated my RSD by travelling in the car or walking more than my body can handle. Sometimes they are positional and other times they fade upon resting for about ten minutes.This becomes problematic for alot of people with RSD especially while eating. My hands will tremor while I am eating and I usually will spill what I am eating or drinking at that time.I found this info on tremors:"
Tremors
May be occasional (sporadic), temporary (episodic) or occurring at intervals (intermittent)
Occur at a rate of about 6-10 tremors per second (when tremors are occurring)
May affect the head, hands, arms, eyelids, or other muscles
Do not usually affect the lower extremities(I have seen my roomate in the hospital have leg tremors so for some people with RSD it can happen, sorry didn't mean to jump on my soapbox lol here is the rest of the info)
May not affect both sides of the body equally
A shaking or quivering sound to voice
Head nodding
Tremors worsen with voluntary movement or emotional stress
Tremors disappear during sleep "
I would love to hear your experiences with tremors along with your RSD. You can add your experiences or opinions to this thread.
Robyn
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From: byrd45 Sent: 8/18/2005 8:15 AM
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From: GalenaFaolan Sent: 4/13/2005 10:10 PM
Sounds as if they're talking about the most common tremors and not specifically those related to RSD.
I'm here to tell you that I get them in my legs. They can be awful sometimes too. When it first happened after I got RSD, it scared Serena (my daughter) to see that happening to me. The first time it happened with her home, I immediately made a joke about it and got her laughing. Now my leg tremors are a source of humor for us no matter that it can be quite painful for me. I can remember the first time it happened. It was just a few months into RSD and I had no clue. I had gone to bed when my leg started up and wouldn't stop. I got up, booted up the computer and found my friends online to talk. I was really scared!!! They kept me "talking" for a couple of hours. The jerking lasted for a little over an hour.
Only one time has both legs done it at the same time and that was during Hurricane Jeanne. The eye was close to us and they both went nuts on me, not to mention my pain level was through the roof!!! During the 1st hurricane, Frances, it was only my left leg as usual and pain level through the roof. It got worse the closer the eye got to us. So, lesson learned!! HURRICANES HURT!!! LMAO
So, it happens sometimes once a week for half an hour. Other times it happens more often for a lot longer. I just never know when it's gonna hit me, but I always, always laugh, even if it is through gritted teeth!!
Love and Hugs,.
Karen J
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Recommend Delete Message 3 of 3 in Discussion
From: <NOBR>therese521</NOBR> Sent: 4/13/2005 10:12 PM
Robyn,
I've definitely had the "tremors" with RSD. I was at one point
prescribed "Sinemet" (Carbidopa/levo) for them. It's actually a drug
used for Parkinson's patients, and works VERY well for me.
I have actually had them (or more like "spasms") at night. If I don't
take the Sinemet then my muscles jump so bad at night that they wake me up.
Thanks.
Therese
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From: byrd45 Sent: 8/18/2005 8:20 AM
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From: <NOBR>therese521</NOBR> Sent: 10/31/2004 11:27 PM
Robyn,
Just thought I'd give you some of my thoughts on "tremors and RSD". I
definitely get them. They actually happen to me in two different ways.
One is that my hands shake (tremor), and the other is that I get
"spasms" (my arm will just all of the sudden "jump" from my elbow up).
Sometimes the "spasm" happens during the night and is bad enough to wake
me up.
There is also a "disease" called "restless leg syndrome". I don't know
if you ever heard of it or not. It's actually very common in women from
about 30 to 50. It gets worse when our hormones are off (during the time
of our period). When all this started with me with the RSD the restless
leg syndrome got much worse. It makes your legs (and can actually happen
in other parts of the body too) "shake" or have a feeling of "shaking"
inside. It's a really awful feeling and you get a sense of going crazy
when it happens because you can't stop it. They say that it gets worse
when you rest and is relieved a little when you move your legs.
There's a drug, that's actually given for Parkinson's disease, that I
take that really helps a lot with all of these. It's called "Sinemet (or
Carbodopa/Levodopa)". I really suggest it. It takes a couple of days to
get into your system so don't get frustrated with it. It's worth the wait.
Anyway, I just thought I'd let you know my thoughts. I really think it's
worth talking to your Doc about the Sinemet. Good luck!
Love,
Therese
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Recommend Delete Message 3 of 11 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/1/2004 6:37 PM
Hi Therese,
I am glad that is working out for you it is definitely worth considering. I have heard of restless leg syndrome but didn't know too much so thanks for explaining it. Is it painful? That must be annoying to be woke up by it.Has that medicine caused any side effects? Anyone just curious. Did you have a good Halloween?We had a great time but I'll put more about that in a general post.
Robyn
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Recommend Delete Message 4 of 11 in Discussion
From: <NOBR>countrygalinpain</NOBR> Sent: 4/20/2005 7:08 PM
Hey,
I just wanted to say that I have RSD in my left leg and sometimes
you would swear my leg was having siezures. Usually when I stretch.
I don't know if this classifies as tremors or not, but it sure does hurt
something awful. That's all I wanted to add.
Christy
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From: <NOBR>therese521</NOBR> Sent: 4/20/2005 7:33 PM
countrygalinpain wrote:
> New Message on RSD Outreach <http://groups.msn.com/RSDOutreach>
>
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> *Weekly Discussion- RSD and Tremors*
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> <http://groups.msn.com/RSDOutreach/profile?user=countrygalinpain%E2%9C%93>
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>
> */Hey,/*
> */ I just wanted to say that I have RSD in my left leg and
> sometimes /*
> */you would swear my leg was having siezures. Usually when I
> stretch./*
> */I don't know if this classifies as tremors or not, but it sure
> does hurt /*
> */something awful. That's all I wanted to add./*
> *//*
> */ Christy/*
>
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Christy,
Your story sounds very familiar. I've had RSD for 10 years now. They
weren't able to identify it for quite a few years. They diagnosed me
with everything from rare forms of cancer to arthritis, then changed
their minds and kept saying they really didn't know what it was but
something was "definitely wrong".
Anyway, welcome to the group. Robyn is GREAT. This is a wonderful group
of people and it's really helpful to talk to others who are going
through the same thing.
I've had the "seizures" that you have in your legs. It's called
"restless leg syndrome" (assuming it's the same thing). I agree that
it's not fun at all. I take a drug called "sinemet" for it (and for
other tremors) and it does help. The also say that hormone problems can
contribute to them. So if it gets really bad I take "Pamprin" for it and
that really helps (even if it's not "that time of the month")..
Good luck and I know you'll find a lot of comfort and strength with this
group.
Love.
Therese
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Recommend Delete Message 6 of 11 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 4/21/2005 6:48 AM
Dear countrygal,
It sure does sound like it to me....Some people have tremors constantly and sometimes it is off and on. Mine usually starts up after being in the car or if I overdue it. I get tremors in my neck and arms and it does hurt so bad! Anyway great to have you here and look forward to hearing from you in the future.
Love,
Robyn
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Recommend Delete Message 7 of 11 in Discussion
From: <NOBR>countrygalinpain</NOBR> Sent: 4/21/2005 10:03 AM
I've had restless legs all my life but the seizures have just started since I've been diagnosed with RSD. These are really violent. thanks
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From: byrd45 Sent: 8/18/2005 8:21 AM
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From: <NOBR>lsr4t9</NOBR> Sent: 4/24/2005 5:05 PM
Thank you for the info as I have just started the tremors and was scared to death. Just another part of my journey I know but glad if that is the word I should use, to see that It's not only me. I have had a bad week as the prospect of my right hand being effected with RSD is a possibility now. The Dr. doesn't believe it but I have all the pain I did with the left one in the beginning. He ran blood work and should find out something next week. Has anyone had the same problem with the mirror effect?
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Recommend Delete Message 9 of 11 in Discussion
From: <NOBR>glendapullum</NOBR> Sent: 4/24/2005 5:24 PM
Don't know if this is what your talking about or not but here lately when I lay down and get relaxed I notice my legs jerking it may only do it one or two times but its really weird hugs
glenda
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Recommend Delete Message 10 of 11 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 4/25/2005 8:31 AM
Hi Isr4t9,
I was terrified to until my doctor told me what was going on. I have noticed when I have alot of stress it makes my tremors start as well. Did anyone else have this happen? Mine come and go, but I know everyone is different. Some people have them here and there and some people have them more often. I have RSD in both my arms from the very beginning although my pain and symptoms have always been worse in the right. It have read that it is possible for it too spread to a mirror limb. Burning pain is significant of RSD. If it is feeling like that I would keep on telling your doctor until he/she will listen. Alot of doctors still don't want to believe that RSD can spread,but it definately can in alot of people. I hope everything goes well on your next appointment. My RSD spread into my face next,inner ear,then right leg,and now into my left. All of my right side RSD symptoms are not as severe as my left. Isn't that strange?? Anyway now they consider my RSD full body. I hope this helps.
Love,
Robyn
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Recommend Delete Message 11 of 11 in Discussion
From: GalenaFaolan Sent: 4/25/2005 11:11 AM
Isr4t9, I had mirror spread too. I didn't wait for a doc to tell me though. I could feel it and that was enough!! Mine started in left knee and went down into the foot then up into the thigh and hip same side. Then, I started to feel the pain in my right foot and it ran, literally, up my right leg and into the hip there. It spread fast with me and Jan last year I started feeling pain in my arms too. I have noticed that, pain wise, the pain can be worse on the left than the right side. I believe that it's due to the RSD starting on the left side and is always going to be a bit worse.
My tremors come and go. Usually it'll happen from being too stressed or when my pain gets real high, then they'll just go off!!! I hate it, but what ya going to do?? James usually massages my legs right around the knee and that sometimes helps it stop faster. It's like it interrupts the signals in the nerves that started it to begin with.
Love and Hugs,
Karen J
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From: byrd45 (Original Message) Sent: 8/18/2005 8:12 AM
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 4/13/2005 9:54 PM
Sent: 10/25/2004 8:06 PM
HI Everyone,
This week I thought we could discuss RSD and Tremors. Sometimes a person with RSD can have severe tremors these can happen in any extremity and in my case in my neck and hands. Luckily mine are intermitent and I handle it the best I can when they do happen. The neck tremors hurt so bad and are a sign that I have agravated my RSD by travelling in the car or walking more than my body can handle. Sometimes they are positional and other times they fade upon resting for about ten minutes.This becomes problematic for alot of people with RSD especially while eating. My hands will tremor while I am eating and I usually will spill what I am eating or drinking at that time.I found this info on tremors:"
Tremors
May be occasional (sporadic), temporary (episodic) or occurring at intervals (intermittent)
Occur at a rate of about 6-10 tremors per second (when tremors are occurring)
May affect the head, hands, arms, eyelids, or other muscles
Do not usually affect the lower extremities(I have seen my roomate in the hospital have leg tremors so for some people with RSD it can happen, sorry didn't mean to jump on my soapbox lol here is the rest of the info)
May not affect both sides of the body equally
A shaking or quivering sound to voice
Head nodding
Tremors worsen with voluntary movement or emotional stress
Tremors disappear during sleep "
I would love to hear your experiences with tremors along with your RSD. You can add your experiences or opinions to this thread.
Robyn
First Previous 2-4 of 4 Next Last Delete Replies
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Recommend Delete Message 2 of 4 in Discussion
From: byrd45 Sent: 8/18/2005 8:15 AM
Recommend Delete Message 2 of 3 in Discussion
From: GalenaFaolan Sent: 4/13/2005 10:10 PM
Sounds as if they're talking about the most common tremors and not specifically those related to RSD.
I'm here to tell you that I get them in my legs. They can be awful sometimes too. When it first happened after I got RSD, it scared Serena (my daughter) to see that happening to me. The first time it happened with her home, I immediately made a joke about it and got her laughing. Now my leg tremors are a source of humor for us no matter that it can be quite painful for me. I can remember the first time it happened. It was just a few months into RSD and I had no clue. I had gone to bed when my leg started up and wouldn't stop. I got up, booted up the computer and found my friends online to talk. I was really scared!!! They kept me "talking" for a couple of hours. The jerking lasted for a little over an hour.
Only one time has both legs done it at the same time and that was during Hurricane Jeanne. The eye was close to us and they both went nuts on me, not to mention my pain level was through the roof!!! During the 1st hurricane, Frances, it was only my left leg as usual and pain level through the roof. It got worse the closer the eye got to us. So, lesson learned!! HURRICANES HURT!!! LMAO
So, it happens sometimes once a week for half an hour. Other times it happens more often for a lot longer. I just never know when it's gonna hit me, but I always, always laugh, even if it is through gritted teeth!!
Love and Hugs,.
Karen J
Reply
Recommend Delete Message 3 of 3 in Discussion
From: <NOBR>therese521</NOBR> Sent: 4/13/2005 10:12 PM
Robyn,
I've definitely had the "tremors" with RSD. I was at one point
prescribed "Sinemet" (Carbidopa/levo) for them. It's actually a drug
used for Parkinson's patients, and works VERY well for me.
I have actually had them (or more like "spasms") at night. If I don't
take the Sinemet then my muscles jump so bad at night that they wake me up.
Thanks.
Therese
Reply
Recommend Delete Message 3 of 4 in Discussion
From: byrd45 Sent: 8/18/2005 8:20 AM
Reply
Recommend Delete Message 2 of 11 in Discussion
From: <NOBR>therese521</NOBR> Sent: 10/31/2004 11:27 PM
Robyn,
Just thought I'd give you some of my thoughts on "tremors and RSD". I
definitely get them. They actually happen to me in two different ways.
One is that my hands shake (tremor), and the other is that I get
"spasms" (my arm will just all of the sudden "jump" from my elbow up).
Sometimes the "spasm" happens during the night and is bad enough to wake
me up.
There is also a "disease" called "restless leg syndrome". I don't know
if you ever heard of it or not. It's actually very common in women from
about 30 to 50. It gets worse when our hormones are off (during the time
of our period). When all this started with me with the RSD the restless
leg syndrome got much worse. It makes your legs (and can actually happen
in other parts of the body too) "shake" or have a feeling of "shaking"
inside. It's a really awful feeling and you get a sense of going crazy
when it happens because you can't stop it. They say that it gets worse
when you rest and is relieved a little when you move your legs.
There's a drug, that's actually given for Parkinson's disease, that I
take that really helps a lot with all of these. It's called "Sinemet (or
Carbodopa/Levodopa)". I really suggest it. It takes a couple of days to
get into your system so don't get frustrated with it. It's worth the wait.
Anyway, I just thought I'd let you know my thoughts. I really think it's
worth talking to your Doc about the Sinemet. Good luck!
Love,
Therese
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Recommend Delete Message 3 of 11 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/1/2004 6:37 PM
Hi Therese,
I am glad that is working out for you it is definitely worth considering. I have heard of restless leg syndrome but didn't know too much so thanks for explaining it. Is it painful? That must be annoying to be woke up by it.Has that medicine caused any side effects? Anyone just curious. Did you have a good Halloween?We had a great time but I'll put more about that in a general post.
Robyn
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Recommend Delete Message 4 of 11 in Discussion
From: <NOBR>countrygalinpain</NOBR> Sent: 4/20/2005 7:08 PM
Hey,
I just wanted to say that I have RSD in my left leg and sometimes
you would swear my leg was having siezures. Usually when I stretch.
I don't know if this classifies as tremors or not, but it sure does hurt
something awful. That's all I wanted to add.
Christy
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Recommend Delete Message 5 of 11 in Discussion
From: <NOBR>therese521</NOBR> Sent: 4/20/2005 7:33 PM
countrygalinpain wrote:
> New Message on RSD Outreach <http://groups.msn.com/RSDOutreach>
>
>
> *Weekly Discussion- RSD and Tremors*
> <http://groups.msn.com/RSDOutreach/_notifications.msnw?type=msg&action=showdiscussion&parent=1&item=339>
>
> *Reply*
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> Message 4 in Discussion
>
> From: countrygalinpain
> <http://groups.msn.com/RSDOutreach/profile?user=countrygalinpain%E2%9C%93>
>
>
> */Hey,/*
> */ I just wanted to say that I have RSD in my left leg and
> sometimes /*
> */you would swear my leg was having siezures. Usually when I
> stretch./*
> */I don't know if this classifies as tremors or not, but it sure
> does hurt /*
> */something awful. That's all I wanted to add./*
> *//*
> */ Christy/*
>
>
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Christy,
Your story sounds very familiar. I've had RSD for 10 years now. They
weren't able to identify it for quite a few years. They diagnosed me
with everything from rare forms of cancer to arthritis, then changed
their minds and kept saying they really didn't know what it was but
something was "definitely wrong".
Anyway, welcome to the group. Robyn is GREAT. This is a wonderful group
of people and it's really helpful to talk to others who are going
through the same thing.
I've had the "seizures" that you have in your legs. It's called
"restless leg syndrome" (assuming it's the same thing). I agree that
it's not fun at all. I take a drug called "sinemet" for it (and for
other tremors) and it does help. The also say that hormone problems can
contribute to them. So if it gets really bad I take "Pamprin" for it and
that really helps (even if it's not "that time of the month")..
Good luck and I know you'll find a lot of comfort and strength with this
group.
Love.
Therese
Reply
Recommend Delete Message 6 of 11 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 4/21/2005 6:48 AM
Dear countrygal,
It sure does sound like it to me....Some people have tremors constantly and sometimes it is off and on. Mine usually starts up after being in the car or if I overdue it. I get tremors in my neck and arms and it does hurt so bad! Anyway great to have you here and look forward to hearing from you in the future.
Love,
Robyn
Reply
Recommend Delete Message 7 of 11 in Discussion
From: <NOBR>countrygalinpain</NOBR> Sent: 4/21/2005 10:03 AM
I've had restless legs all my life but the seizures have just started since I've been diagnosed with RSD. These are really violent. thanks
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From: byrd45 Sent: 8/18/2005 8:21 AM
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From: <NOBR>lsr4t9</NOBR> Sent: 4/24/2005 5:05 PM
Thank you for the info as I have just started the tremors and was scared to death. Just another part of my journey I know but glad if that is the word I should use, to see that It's not only me. I have had a bad week as the prospect of my right hand being effected with RSD is a possibility now. The Dr. doesn't believe it but I have all the pain I did with the left one in the beginning. He ran blood work and should find out something next week. Has anyone had the same problem with the mirror effect?
Reply
Recommend Delete Message 9 of 11 in Discussion
From: <NOBR>glendapullum</NOBR> Sent: 4/24/2005 5:24 PM
Don't know if this is what your talking about or not but here lately when I lay down and get relaxed I notice my legs jerking it may only do it one or two times but its really weird hugs
glenda
Reply
Recommend Delete Message 10 of 11 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 4/25/2005 8:31 AM
Hi Isr4t9,
I was terrified to until my doctor told me what was going on. I have noticed when I have alot of stress it makes my tremors start as well. Did anyone else have this happen? Mine come and go, but I know everyone is different. Some people have them here and there and some people have them more often. I have RSD in both my arms from the very beginning although my pain and symptoms have always been worse in the right. It have read that it is possible for it too spread to a mirror limb. Burning pain is significant of RSD. If it is feeling like that I would keep on telling your doctor until he/she will listen. Alot of doctors still don't want to believe that RSD can spread,but it definately can in alot of people. I hope everything goes well on your next appointment. My RSD spread into my face next,inner ear,then right leg,and now into my left. All of my right side RSD symptoms are not as severe as my left. Isn't that strange?? Anyway now they consider my RSD full body. I hope this helps.
Love,
Robyn
Reply
Recommend Delete Message 11 of 11 in Discussion
From: GalenaFaolan Sent: 4/25/2005 11:11 AM
Isr4t9, I had mirror spread too. I didn't wait for a doc to tell me though. I could feel it and that was enough!! Mine started in left knee and went down into the foot then up into the thigh and hip same side. Then, I started to feel the pain in my right foot and it ran, literally, up my right leg and into the hip there. It spread fast with me and Jan last year I started feeling pain in my arms too. I have noticed that, pain wise, the pain can be worse on the left than the right side. I believe that it's due to the RSD starting on the left side and is always going to be a bit worse.
My tremors come and go. Usually it'll happen from being too stressed or when my pain gets real high, then they'll just go off!!! I hate it, but what ya going to do?? James usually massages my legs right around the knee and that sometimes helps it stop faster. It's like it interrupts the signals in the nerves that started it to begin with.
Love and Hugs,
Karen J
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