I have been dealing with RLS for about 15 years. Recently I have leg pain at various times during the day and haven't been able to identify the causative conditions.
I welcome any suggestions on treatment for control of the pain.
Thank you. Lowell
RLS and leg pain
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sugbrendas
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Lowell,
My RLS doc referred me to a neurologist for my pain. The neurologist first checked me for lupus, rheumatoid arthritis, a lot of autoimmune diseases with blood work. I then ended up getting an MRI of my brain and back of neck. Everything was normal. My pain was in my left shoulder, arm, leg which is what usually twitches first and the hardest. What was scary was that it hurt constantly even if I wasn't twitching.
I'm going to stop there because I don't want you to get overwhelmed. (and I'm late for work!!) I'll finish my story the next time you post.
You need to see a doctor that specializes in RLS or at least a neurologist who doesn't make you think you're crazy. (Sorry--I have had personal horrible experiences with neuros)
I'll look back for a post tonight on Ohio time.
Rachel
My RLS doc referred me to a neurologist for my pain. The neurologist first checked me for lupus, rheumatoid arthritis, a lot of autoimmune diseases with blood work. I then ended up getting an MRI of my brain and back of neck. Everything was normal. My pain was in my left shoulder, arm, leg which is what usually twitches first and the hardest. What was scary was that it hurt constantly even if I wasn't twitching.
I'm going to stop there because I don't want you to get overwhelmed. (and I'm late for work!!) I'll finish my story the next time you post.
You need to see a doctor that specializes in RLS or at least a neurologist who doesn't make you think you're crazy. (Sorry--I have had personal horrible experiences with neuros)
I'll look back for a post tonight on Ohio time.
Rachel
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Anonymous
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SquirmingSusan
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I can't say this is necessarily a reply to your question, I have personally found enormous relief from Topomax, a drug once used for seizures and migraine sufferers.
I mainly want to get a message to everyone who suffers from RLS, or knows anyone who knows someone who has problem sleeping and "just does not know why"---look into RLS and GET HELP--let me tell you why this message is so important to me now-
Four weeks tomorrow my mother took her own life by hanging herself in my sister's basement. I come from a large family (10 adult children) and we are all devasted. She had been suffering from various psychological issues most of her life, and they had escalated to the point of two short hospital stays in the past 5 months. While going through her papers after her death, I saw a personal info page she filled out during one of those stays. One of her "desires" was listed as "being able to sleep without medication".
I have since spoken with various family members and found there are several of us who suffer from RLS, including one of my mother's sisters. It broke my heart even more to think that had ONE doctor considered RLS a condition that could be treated, that possibly so many other conditions could have been avoided. Personally, I suffered from
Alopecia (random unexplained hair loss-significant with bald spots), that disappeared once I was treated for RLS.
I can't say we could have avoided her final and horrible choice, but I do wonder how her quality of life could have been improved had ONE doctor considered thinking outside the box, and considered helping her in another direction. Or if someone in our family had considered RLS.
SO, that is my soapbox-if you can help someone, please call, run, scream, do whatever you need to do and help them turn their life around.
thank you for your time,
Cindy R
I mainly want to get a message to everyone who suffers from RLS, or knows anyone who knows someone who has problem sleeping and "just does not know why"---look into RLS and GET HELP--let me tell you why this message is so important to me now-
Four weeks tomorrow my mother took her own life by hanging herself in my sister's basement. I come from a large family (10 adult children) and we are all devasted. She had been suffering from various psychological issues most of her life, and they had escalated to the point of two short hospital stays in the past 5 months. While going through her papers after her death, I saw a personal info page she filled out during one of those stays. One of her "desires" was listed as "being able to sleep without medication".
I have since spoken with various family members and found there are several of us who suffer from RLS, including one of my mother's sisters. It broke my heart even more to think that had ONE doctor considered RLS a condition that could be treated, that possibly so many other conditions could have been avoided. Personally, I suffered from
Alopecia (random unexplained hair loss-significant with bald spots), that disappeared once I was treated for RLS.
I can't say we could have avoided her final and horrible choice, but I do wonder how her quality of life could have been improved had ONE doctor considered thinking outside the box, and considered helping her in another direction. Or if someone in our family had considered RLS.
SO, that is my soapbox-if you can help someone, please call, run, scream, do whatever you need to do and help them turn their life around.
thank you for your time,
Cindy R
cindowski
Wow, Cindy,
I can only say God Bless you and your family. I wish a cyber hug could relay what I feel for you right now.
I simple don't have the words needed to write much, but wanted you to know that we fill the moon with our love each night. if your ever in need and no one is around, look to the moon, we are are there.
God be with you as you heal and surely with your family.
Lynne
I can only say God Bless you and your family. I wish a cyber hug could relay what I feel for you right now.
I simple don't have the words needed to write much, but wanted you to know that we fill the moon with our love each night. if your ever in need and no one is around, look to the moon, we are are there.
God be with you as you heal and surely with your family.
Lynne
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ViewsAskew
- Moderator
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How courageous of you to share that given how difficult a time this must be for you. Thank you for sharing how important this is. . .I hope your words can be a catalyst for the medical professional to see just how devastating this condition can be when compounded by lack of understanding and lack/incorrect treatment. Finding peace shouldn't be so difficult.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Penguinrocks
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To all:
Thank you to all for the warm and caring thoughts. The phrase "heart-broken" were merely words until four weeks ago.
However, if getting the message out that "sleepless nights, achy legs, feeling like you just can't lay still" is a REAL condition, that it is called Restless Leg Syndrome, and that it CAN be treated, then I know I have helped a family forego the pain my family is experiencing now. Let not only the patients, but the doctors know.
Thank you again for your support, and I know the feeling of being held up by many is going to help be get to the other end of this grief,
Cindy R
Thank you to all for the warm and caring thoughts. The phrase "heart-broken" were merely words until four weeks ago.
However, if getting the message out that "sleepless nights, achy legs, feeling like you just can't lay still" is a REAL condition, that it is called Restless Leg Syndrome, and that it CAN be treated, then I know I have helped a family forego the pain my family is experiencing now. Let not only the patients, but the doctors know.
Thank you again for your support, and I know the feeling of being held up by many is going to help be get to the other end of this grief,
Cindy R
cindowski
rls and leg pain
Oh Cindy I just read your post and I am so sorry for your loss. I cannot imagine what you are going through; however if you just want to talk I am here for you.
I will keep you and your family in my daily prayers.
I will keep you and your family in my daily prayers.
Charlene
Taking one day at a time
Taking one day at a time