JULY 2019 - New Members

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

JULY 2019 - New Members

Post by Rustsmith »

Monday, July 1

Welcome to

mrlopez, whose every night causes the constant wanting to move legs, which is horrible.

Please post a note telling us what you are doing to manage your symptoms and asking any questions that you have. That way we can provide you with some suggestions for improvement and relief from the constant nightly symptoms.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to BillC

Post by Rustsmith »

Tuesday, July 2

Welcome to

BillC, who has an inability to sleep because of RLS. Meds have helped some.

If you will post a note telling us about your meds (including dose), we may be able to suggest some things that will get you more sleep.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Matteo

Post by Rustsmith »

Tuesday, July 2

Welcome to

Matteo, who is losing sleep quality because of RLS.

If you will post a note telling us what you are doing to manage your RLS, we will then be able to offer some suggestions on how to improve your sleep.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Fluffy

Post by Rustsmith »

Tuesday, July 2

Welcome to

Fluffy, who has severe RLS and has very poor sleep habits because of it. She is gaining weight because to deal with the restlessness she eats during the night. Thinking of going to a functional medicine doctor.

Are you taking a dopamine agonist, such as Mirapex or Requip? If so, you could be experiencing a side effect that is causing you to eat so much. If you will post a note telling us about your meds and the doses, we may be able to offer some suggestions to improve your sleep and thereby reduce your night time eating.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to lmartin123

Post by Rustsmith »

Wednesday, July 3

Welcome to

lmartin123, who has had RLS for 10 years and has been taking Requip. She is now experiencing augmentation. Her legs are restless most anytime of the day and night now. When taking Requip she is very drowsy.

If you are going through augmentation, then you need to get off of Requip. If you will post a note telling what dose we are taking, we can describe the process that you and your doctor need to go through in order to get you onto something else with the least amount of discomfort possible.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to ewilson

Post by Rustsmith »

Friday, July 5

Welcome to

ewilson, who has a really hard time getting any sleep and didn't even know there was a restless leg foundation until yesterday!

Please post a note telling us what you are doing to manage your RLS so that we can offer you some suggestions to help you get more sleep.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to LCH

Post by Rustsmith »

Friday, July 5

Welcome to

LCH, who has had RLS for years and has experienced several medications working then not working. LCH is currently retired and would like to return to the work force but sleep patterns (or lack of sleep patterns) show that right now being retired is best. A year ago LCH's neurologist referred LCH back to the primary care doctor with the notation that he had tried everything available. When spending the night with friends and family, LCH often has to explain that should the homeowners hear someone in the kitchen that it is just LCH with RLS.

Please post a note telling us what meds you have tried. Our experience is that there is ALWAYS something else to try, but many doctors (including neurologists) either don't know enough or are unwilling to try some of the more effective medications (or ones that are used less frequently but are still highly effective.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to dkw68

Post by Rustsmith »

Friday, July 5

Welcome to

dkw68, who was taken off oxycontin ER after being on it for 13 years and has realized that dkw has RLS. Since quitting oxy, dkw has been trying different medicines with no total success and only being able to sleep 4 hours or so before the regular medicine wears off. This is really wearing.

Please post a note telling us why you had to give up oxycontin ER and what meds that you have tried. There are other ER type opioids that can be effective if the problem simply had to do with the price of oxy ER.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to nomoboh

Post by Rustsmith »

Saturday, July 6

Welcome to

nomoboh, whose RLS prevents a good night's sleep.

Please post a note telling us what you are doing to manage your RLS so that we can offer suggestions on how you can improve your ability to sleep.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to ymgap

Post by Rustsmith »

Sunday, July 7

Welcome to

ymgap, who has had RLS for years and would like to connect with others experiencing the same thing.

You have come to the right place to connect with others with RLS. Please post a note telling us what you do to manage, or simply jump into an ongoing discussion.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to JCE

Post by Rustsmith »

Sunday, July 7

Welcome to

JCE, who has suffered from rls attacts since he was a small boy, first once a month, then as a teenager more often and as an adult every day. With 23 years since he was diagnosed. Since 4 years ago, he has been on oxycodon (60mg), gabapentin (1600mg), bedron (1,2g), neupro 3mg, rivotil 1mg. He is desperate. He can't see any future. He is always in pain or afraid of the coming pain. The last three months after a hospital stay, he is on a special medication plan that reminds me via app to take the pills. This has the effect that since three months, for the first time in his life he is without pain. But how will it continue. He knows he cannot take more medication, we have tried more than six different combinations of meds over the last nine years, but the last days it starts to hurt again. Despite the plan. he is afraid to not wake up tomorrow because in a moment of severe pain he might take the one pill that makes his heart stop beating. Can anybody relate?

Unfortunately, we can all relate and all of us are familiar with issues of not taking meds at the proper time.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to zieglerzoo

Post by Rustsmith »

Sunday, July 7

Welcome to

zieglerzoo, who has RLS, as does her mom and sister. She is always trying to educate herself about RLS and new forms of treatment.

We can help you stay on top of new forms of treatment. If you will post a note telling us what you are currently doing and asking any questions that you have, we should 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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to mgm484

Post by Rustsmith »

Sunday, July 7

Welcome to

mgm484, who has RLS and has seen several providers. mgm is struggling to find a provider since moving to Florida and would like to get insight from other forum members.

Unfortunately, Florida appears to be an area where there aren't enough physicians who are familiar with treating RLS. If you can find a GP who is willing to learn, we can point you to the information that you can use to educate yourself and your doctor. If you post a note, we can provide you with some of that info.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to CricketFeet

Post by Rustsmith »

Sunday, July 7

Welcome to

CricketFeet, who has been suffering since the 80s. He got diagnosed in 1999. It is a miserable condition that changes over time due to augmentation.

Please post a note telling us what you are currently doing to manage your RLS. There are ways to treat it, but they change once you have been through augmentation.
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.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to ARVSVV2019

Post by Rustsmith »

Sunday, July 7

Welcome to

ARVSVV2019, who has been dealing with RLS for close to 20 years. ARVS has been on Requip, and it has not helped. ARVS can't sit and relax in the evening and paces back and forth creating anxiety and irritability.

Please post a note telling us whether your doctor has done blood work to determine your ferritin level. If so, what is the number? Also, have you tried other medications, such as gabapentin or pramipexole?
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.

Locked