JANUARY 2020 New Members
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- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to cstephens.mhc
Thursday, January 23
Welcome to
cstephens.mhc, whose RLS has gotten steadily worse over the years and until recently was afraid of getting old. cstephens envisioned age 90, frail and standing in the evening. Not a pretty vision!
Please post a note telling us what you do to manage your RLS and asking any questions that you have. We would love to be able to suggest ways to improve that vision.
Welcome to
cstephens.mhc, whose RLS has gotten steadily worse over the years and until recently was afraid of getting old. cstephens envisioned age 90, frail and standing in the evening. Not a pretty vision!
Please post a note telling us what you do to manage your RLS and asking any questions that you have. We would love to be able to suggest ways to improve that vision.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to roger
Friday, January 24
Welcome to
roger, who has been suffering from RLS for the past 25 years. He used to wake up and beat on his knees just to make it stop until he went to the doctor and found out about RLS. Even now the medicines don't always work. He feels as though at times he wants to remove my legs so he can rest. So, he wants to know how other people are coping with this.
Please post a note telling us what meds you are taking and asking any questions that you have. We would love to be able to help you out.
Welcome to
roger, who has been suffering from RLS for the past 25 years. He used to wake up and beat on his knees just to make it stop until he went to the doctor and found out about RLS. Even now the medicines don't always work. He feels as though at times he wants to remove my legs so he can rest. So, he wants to know how other people are coping with this.
Please post a note telling us what meds you are taking and asking any questions that you have. We would love to be able to help you out.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to jrexford35
Friday, January 24
Welcome to
jrexford35, who has struggled with RLS for years and is currently in a very bad pattern of RLS. jrexford has tried lots of different remedies, none of which work in the long term.
Please post a note telling us about these remedies. There are long term solutions that we can tell you about once we know more.
Welcome to
jrexford35, who has struggled with RLS for years and is currently in a very bad pattern of RLS. jrexford has tried lots of different remedies, none of which work in the long term.
Please post a note telling us about these remedies. There are long term solutions that we can tell you about once we know more.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to Brendan
Saturday, January 25
Welcome to
Brendan, who is a 51 year old male in USA. He has been taking a DA (Ropinerole) for almost 20 years. From 47 to 51 years old, experiencing (severe) DA augmentation. In early 2020, he tried to get off DA completely (with no substitute) but his symptoms went absolutely crazy and it almost killed him (zero hours sleep). He started Horizant last night (with Ropinerole) but it makes me very dizzy and somewhat nauseous so he is thinking of stopping. He is pretty miserable these days.
Horizant isn't strong enough to cover the withdrawal from ropinerole. Your two choices are to go with zero sleep for about 5 days as you withdraw or for your doctor to provide you with at least a short term course of a low dose opioid to cover the ropinerole withdrawal followed by stopping the opioid (which is easy by comparison). Unfortunately, most doctors are not familiar with treating patients with DA augmentation, so you may need to find a doctor who understands the proper treatment of RLS.
Welcome to
Brendan, who is a 51 year old male in USA. He has been taking a DA (Ropinerole) for almost 20 years. From 47 to 51 years old, experiencing (severe) DA augmentation. In early 2020, he tried to get off DA completely (with no substitute) but his symptoms went absolutely crazy and it almost killed him (zero hours sleep). He started Horizant last night (with Ropinerole) but it makes me very dizzy and somewhat nauseous so he is thinking of stopping. He is pretty miserable these days.
Horizant isn't strong enough to cover the withdrawal from ropinerole. Your two choices are to go with zero sleep for about 5 days as you withdraw or for your doctor to provide you with at least a short term course of a low dose opioid to cover the ropinerole withdrawal followed by stopping the opioid (which is easy by comparison). Unfortunately, most doctors are not familiar with treating patients with DA augmentation, so you may need to find a doctor who understands the proper treatment of RLS.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to Debl1
Sunday, January 26
Welcome to
Debl1, whose RLS has affected her life in numerous ways; lack of sleep, embarrassing episodes in front of strangers (friends and family don't mind and try to help), taken her confidence which she needed to recover from two botched replacement operations. She is often foggy and tired.
Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions to improve your life.
Welcome to
Debl1, whose RLS has affected her life in numerous ways; lack of sleep, embarrassing episodes in front of strangers (friends and family don't mind and try to help), taken her confidence which she needed to recover from two botched replacement operations. She is often foggy and tired.
Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions to improve your life.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to debk67
Sunday, January 26
Welcome to
debk67, who has suffered with RLS for 30 years and medication that used to work is no longer working. She is hoping to learn from other's experiences and contribute from her own.
Please post a note and tell us about the medication that is no longer working. We can probably offer some suggestions that can fix that issue for you.
Welcome to
debk67, who has suffered with RLS for 30 years and medication that used to work is no longer working. She is hoping to learn from other's experiences and contribute from her own.
Please post a note and tell us about the medication that is no longer working. We can probably offer some suggestions that can fix that issue for you.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to SandyP
Monday, January 27
Welcome to
SandyP, who is struggling with worsening RLS. She is looking for resources and support so she can manage her symptoms.
Please post a note telling us about what you are currently doing to manage your symptoms so that we can offer some suggestions for improvement.
Welcome to
SandyP, who is struggling with worsening RLS. She is looking for resources and support so she can manage her symptoms.
Please post a note telling us about what you are currently doing to manage your symptoms so that we can offer some suggestions for improvement.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to Garypic
Monday, January 27
Welcome to
Garypic, who has been treated for RLS as far back as the late 80s and has tried most if not all the Meds in the pipeline with different degrees of improvement. His concern is the lack of knowledge that most doctors hold. It appears that they treat RLS as a one size fits all.
At least you have found doctors who know what RLS is and have a tidbit of info on how to treat it. Many know nothing at all other than what a pharmaceutical saleman has told them. If you will post a note, we can provide you with some suggestions on how to find a knowledgeable doctor, although it could require some work and travel on your part.
Welcome to
Garypic, who has been treated for RLS as far back as the late 80s and has tried most if not all the Meds in the pipeline with different degrees of improvement. His concern is the lack of knowledge that most doctors hold. It appears that they treat RLS as a one size fits all.
At least you have found doctors who know what RLS is and have a tidbit of info on how to treat it. Many know nothing at all other than what a pharmaceutical saleman has told them. If you will post a note, we can provide you with some suggestions on how to find a knowledgeable doctor, although it could require some work and travel on your part.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to Carol Edwards
Tuesday, January 28
Welcome to
Carol Edwards, who has had RLS for at least 10 years now. It stops her from getting to sleep and often continues thru the night. She can't do movies or anywhere she has to sit still. So, she needs answers.
Carol, if you will post a note telling us what you do to manage your RLS, we may be able to provide some of those answers that you seek.
Welcome to
Carol Edwards, who has had RLS for at least 10 years now. It stops her from getting to sleep and often continues thru the night. She can't do movies or anywhere she has to sit still. So, she needs answers.
Carol, if you will post a note telling us what you do to manage your RLS, we may be able to provide some of those answers that you seek.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to Crazy legs
Wednesday, January 29
Welcome to
Crazy legs, who RLS causes loss of sleep low energy level during the day.
Please post a note telling us what you are doing to manage your RLS and asking any questions that you have. We would love to be able to help you out.
Welcome to
Crazy legs, who RLS causes loss of sleep low energy level during the day.
Please post a note telling us what you are doing to manage your RLS and asking any questions that you have. We would love to be able to help you out.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to hwinborne
Thursday, January 30
Welcome to
hwinborne, who has lived with WED since age 19, more than 40 years. With age, other nagging ailments arise and it becomes more difficult to manage. So, hwinborne is looking for information and support.
Please post a note telling us what you are doing to manage your WED and asking any questions that you have. We would love to be able to provide whatever information it is that you seek.
Welcome to
hwinborne, who has lived with WED since age 19, more than 40 years. With age, other nagging ailments arise and it becomes more difficult to manage. So, hwinborne is looking for information and support.
Please post a note telling us what you are doing to manage your WED and asking any questions that you have. We would love to be able to provide whatever information it is that you seek.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
-
- Moderator
- Posts: 6533
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Welcome to golub
Thursday, January 30
Welcome to
golub, who has been suffering from RLS since at least 1999 and was finally diagnosed in 2016. golub has found the RLS organization extremely helpful and encouraging, but still has a few questions.
Please post a note with your questions and if we cannot answer them, we can try to find the answers for you.
Welcome to
golub, who has been suffering from RLS since at least 1999 and was finally diagnosed in 2016. golub has found the RLS organization extremely helpful and encouraging, but still has a few questions.
Please post a note with your questions and if we cannot answer them, we can try to find the answers for you.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.