JULY 2018 - NEW MEMBERS

Whether new to RLS/WED 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
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Posts: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

JULY 2018 - NEW MEMBERS

Postby Rustsmith » Sun Jul 01, 2018 4:04 pm

Sunday, July 1

Welcome to

dkw106, whose RLS has affected sleep profoundly. This is causing poor memory recall, work performance, and dkw106 can hardly travel in a car or plane without taking extra medication.

Please post a note telling us about your medication, including dose, so that we can offer you some suggestions that might improve your situation.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to twitchy

Postby Rustsmith » Sun Jul 01, 2018 8:28 pm

Sunday, July 1

Welcome to

twitchy, whose RLS make it a rarity to be able to sit still, makes it impossible to get a good night's sleep and so twitchy needs support and info.

Please post a note telling us about how you are currently managing your RLS and asking any questions that you have so that we can offer the support and info that you need.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Beckyha

Postby Rustsmith » Tue Jul 03, 2018 12:20 am

Monday, July 2

Welcome to

Beckyha, who developed RLS about eight weeks after a surgery two years ago. Gabapentin worked very well up until this past month when it hasn’t worked at all. The sleep loss has been just awful! She is starting Requip tonight and hoping for no augmentation in the future. :) Managing RLS along with spinal arthritis and fibromyalgia has caused her to have reduce my work to half time for the first time in nearly 35 years.

Hopefully your doctor has already checked your ferritin levels to confirm that they are over 75 so that you can ward off augmentation for as long as possible. Please post a note with any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Gasbird

Postby Rustsmith » Tue Jul 03, 2018 7:43 pm

Tuesday, July 3

Welcome to

Gasbird, who has received treatment for ten years. But during a recent trip to Colorado, discovered that medical marijuana also alleviated symptoms.

That is something that many of us have found as well (and is part of the reason why I live in Colorado now). Please post a note telling us about your non-MMJ treatments and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to SBROOK

Postby Rustsmith » Wed Jul 04, 2018 8:25 pm

Wednesday, July 4

Welecome to

SBROOK, who has had bad sleep since childhood, nearly failed university and lost his first job. All these things can be attributed to effects of RLS.

Please post a note telling us what you are doing to manage your RLS so that we might be able to offer suggestions on how to improve your situation.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to RoyRCA

Postby Rustsmith » Thu Jul 05, 2018 3:56 am

Wednesday, July 4

Welcome to

RoyRCA, who is a 65 year old male, with severe RLS for 1 year. He is waiting to be seen at Stanford Movement Disorder Center. Sinemet and Requip keep the symptoms bearable in the meantime.

Please post a note with any questions that you have about what you can do while you wait.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to alliemd

Postby Rustsmith » Thu Jul 05, 2018 8:35 pm

Thursday, July 5

Welcome to

alliemd, who is unable to sleep because of RLS and the anxiety caused when she does try to go to sleep. She would like to keep informed on the disease and any research on cures or methods of alleviating the symptoms.

To get an idea about the latest research, take a look at the discussion at the top of the General Topics: RLS/WED forum. And please post a note telling us what you are currently doing to manage your symptoms and feel free to ask any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to barblee

Postby Rustsmith » Thu Jul 05, 2018 8:39 pm

Thursday, July 5

Welcome to

barblee, who is tired all the time. She usually cannot sleep one night and then is able to sleep the next night but not always. So she is miserable. Her ferritin level was 14.4 and she has been taking iron for one and a half weeks. She is at the point where she can't take it anymore but doesn't know what to do. Her records are being sent to a neurologist who treats RLS, but his office is five hours away. Her current sleep doctor hasn't been able to help, which is very frustrating.

Please post a note telling us what treatments that you sleep doctor has tried so that we can give you an idea of what the neurologist should tell you. As for the iron, it takes a while for ferritin levels to increase, so be patient.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to fidgetslouie

Postby Rustsmith » Fri Jul 06, 2018 9:17 pm

Friday, July 6

Welcome to

fidgetslouie, who has had RLS since a teenager but didn’t know what it was. fidgetslouie never pursued looking into the problem until after raising five children and working a full time job because louie never slept much anyway. But with age, the symptoms got worse and louie was miserable day and night. After several years now with a sleep specialist, louie is finally on a medication regimen that is working.

Pleases post a note telling us about your current medication regime. And feel free to ask any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Begoniagirl#

Postby Rustsmith » Sat Jul 07, 2018 3:44 pm

Saturday, July 7

Welcome to

Begoniagirl#, who has had RLS since 2 strokes in 1999. It now starts in the morning, and goes throughout the day except as usual when walking. She has been on levodopa/carbidopa 100/10 for 7 years and it doesn’t seem to be working anymore. There are no support groups within 1,000 miles of her and in order to get relief she must walk all night long. She is 75 years old, has all her lights on the Christmas tree set on, and would love to find out if there are any other methods of relief to stop it’s progress.

Yes there are other methods of relief. From your symptoms and the fact that you have been on levodopa/carbidopa, it sounds like you have augmented on the dopamine and therefore need to switch. This can be difficult, so please post a note so that we can offer you some specific comments. And feel free to ask any questions that you have. Our role is to function as a support group for people like yourself who do not have a local group to meet with and discuss RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to ImMommak

Postby Rustsmith » Sun Jul 08, 2018 3:25 pm

Sunday, July 8

Welcome to

ImMommak, whose RLS has plagued her for over 30 years and has intensified with stage 3 kidney disease. She would like to be in touch with others dealing with RLS to learn and share about our experiences.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to afbrat78

Postby Rustsmith » Sun Jul 08, 2018 4:11 pm

Sunday, July 8

Welcome to

afbrat78, who cannot sleep many nights due to RLS. It is very frustrating after having tried several things.

Please post a note telling us what you have tried so that we can provide some suggestions for ways to manage that have a good chance of working.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to donnasm

Postby Rustsmith » Mon Jul 09, 2018 5:32 pm

Monday, July 9

Welcome to

donnasm, who has RLS and it is very hard to concentrate, read, watch tv and especially sleep when this happens.

RLS reduces the quality of our lives in so many different ways. Please post a note telling us a bit about what you are doing to manage your symptoms. There is a good chance that we can offer some suggestions on how to improve your situation.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to AriaLittlehous

Postby Rustsmith » Tue Jul 10, 2018 1:33 am

Monday, July 9

Welcome to

AriaLittlehaus, who says that pramipexole stole 10 years of her life and she was so doped up she didn’t realize it till year 10. So, only acupuncture and herbs from now on.

We hope that you can find relief from acupuncture and herbs. Take a look through our non-prescription forum to get an idea of what others have used, with and without success.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: 3283
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Lonnie

Postby Rustsmith » Tue Jul 10, 2018 1:51 pm

Tuesday, July 10

Welcome to

Lonnie, who is 67 yrs old and have just been diagnosed with RLS. In retrospect Lonnie has had RLS for most of Lonnie's adult life, but it was sporadic - until about 6 years ago due to an emotional trauma with not much relief from RLS since then. Lonnie is sleep deprived most of the time; and has to take antidepressants.

Please post a note telling us what you are currently doing to manage your RLS. And please be aware of the fact that antidepressants can aggravate RLS even though they can be important treatments that are necessary to maintain your mental health.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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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