AUGUST 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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Rowan2015

Post by Rustsmith »

Monday, August 19

Welcome to

Rowan2015, who has suffered from RLS from childhood and it runs in the family. Until Rowan's late 50s, there were just occasional flare ups and sleep would relieve them. Now Rowan has flare ups when with nights of no sleep and it is a vicious cycle, no sleep = flare ups, flare ups = no sleep.

Please post a note telling us what you are doing to manage your RLS so that we will know where to start with our suggestions.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to lesliestownsend

Post by Rustsmith »

Tuesday, August 20

Welcome to

lesliestownsend, who has had RLS for 34 years, which continues to worsen. Treatment has been difficult. She does not know anyone who has symptoms similar to hers in severity, though she knows folk are out there. She has done a lot of research, thanks to the RLS website. She could could benefit from listening to others' stories, and might be able to contribute in a helpful way, as well. She works as a psychotherapist and spiritual director.

There are a number of us who have very severe RLS and we would be happy to share and compare our experiences with you. You can kick off the discussion by posting a note in one of our forums with info about how you manage your RLS and the rest of us can then chime in.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Sparky6881236

Post by Rustsmith »

Tuesday, August 20

Welcome to

Sparky6881236, who needs Info for RLS and wants to help others.

Please post a note telling what you are doing to manage your RLS so what info we can provide.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to nancy schlegel

Post by Rustsmith »

Tuesday, August 20

Welcome to

nancy schlegel, whose RLS has made it even harder to deal with other health issues. She hasto the balance problems from an acoustic neuroma and a stoke. If she is tired, she cannot walk as well and has more stress.

Please post a note telling us what you are taking for your RLS and asking any questions that you have. We would love to try to help you out.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to tjgriffin

Post by Rustsmith »

Friday, August 23

Welcome to

tjgriffin, who wants to keep up on the latest research and information about RLS.

We can definitely help with that. If you will post a note with any questions that you have, we can try to help point you in the right direction.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Cleo'sRLS

Post by Rustsmith »

Friday, August 23

Welcome to

Cleo'sRLS, who has had RLS for 65 years. She had no relief til 2007, when she started on Ropinirole. She want an opportunity to communicate with other patients and access to current medical research & user results.

We can definitely provide you with both of those. You will find research in our General Topics forum. Start from the end for the newest info and work backwards. As for communication, select a topic and post a note to start a discussion or simply 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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to charlka

Post by Rustsmith »

Saturday, August 24

Welcome to

charlka, who is in RLS medication augmentation and her sledp disorder neurologist suggested this site. She is in her 2nd day of tapering off meds and is looking forward to this site for support.

We would love to be able to support you since many of us have been through augmentation (and survived to tell about it :lol: ). Please post a note telling us what you have been taking and the dose you were on and are now down to so that we have an idea about what to tell you.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to ember201946

Post by Rustsmith »

Saturday, August 24

Welcome to

emberto1946, who thinks he has had RLS for most of his life and he is now almost 73 years of age. He thinks he is now at the 'augmentation' stage and is getting less than 2 hours sleep a night and lately, no sleep at all. He is desperate for some help. He has tried Medical Marijuana recently, with great success until the supplier was arrested and made to stop supplying it. He lives in the UK where MM is now legal but his GP cannot refer him to the Clinic because there is no 'pathway' for referral. He believes that it could help but at the moment his hands are tied.

To learn about augmentation, take a look at our files on that topic in the Augmentation forum. Even with MM, getting off of a dopamine agonist is difficult. If you will post a note telling us which med you have been using and the dose, we can describe what you need to discuss with your doctor.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Ztrips

Post by Rustsmith »

Sunday, August 25

Welcome to

Ztrips, whose RLS keeps her up at night. There are several medications that she can't take because it activates RLS. These medications would help her anxiety and depression. She is very frustrated, tired, depressed and have lots of anxiety. She is not sleeping well either.

If you will post a note telling us what you are taking for your RLS, we can offer some suggestions to discuss with your doctor(s) to address all of your conditions.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to church01

Post by Rustsmith »

Tuesday, August 27

Welcome to

church01, who has had RLS since 1982 and it can be pretty miserable, even with meds. There are nights with little sleep, legs twitching and jerking all night. It affects her husband's sleep due to her jumping and movement all night. The feeling of skin crawling and never being able to stay still and relax, will affect you mentally and physically. It takes a toll on your body.

Please post a note telling us about your meds so that we can offer some suggestions to discuss with your doctor about how to improve your sleep and reduce all the problems at night.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Loulas

Post by Rustsmith »

Tuesday, August 27

Welcome to

Loulas, who has had RLS for many years. Dr has been guessing for years. For the past 5 nights been getting 2 to 3 hours of sleep. So Loulas wanted to see what other people do to combat this. When Loulas was around 20 ( 60 now) an old Doc said I have just the thing for you, it was quinine and it worked great. Too bad it was pulled for treating RLS. So doctors put Loulas on gabapentin.... 300mg works when sitting up but the minute Loulas lays down you would think Loulas was having a seizure.

Take a look around and then post a note with any questions that remain. We can definitely offer some suggestions to pass along to your doctor that will help you improve your sleep.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Lynn Booras

Post by Rustsmith »

Thursday, August 29

Welcome to

Lynn Booras, who is miserable most of the time. And her meds caused her to go into rhabdomyolysis.

Please post a note telling about what you have and are taking for your RLS. We can probably suggest ways to safely improve your treatment.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to foxiephoto

Post by Rustsmith »

Thursday, August 29

Welcome to

foxiephoto, who is dealing with RLS and needs support and information.

We can provide both of those. If you will post a note telling us what you are doing to manage your RLS and asking any questions that you have, we will try to provide you with answers.
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Bula2221

Post by Rustsmith »

Thursday, August 29

Welcome to

Bula2221, who has been dealing with PLMD for a few years and in the past 6 months this has “evolved” to include RLS. He is still working with his sleep doc (PA, actually) to find an effective medication regimen.

If you will post a note telling us what you have tried so far, we can explain the current guidelines for trying new meds and the options that are available. Each has positives and negatives that must be considered. Also, have you had any blood work done to check on your iron levels?
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: 4650
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Whatsername03

Post by Rustsmith »

Thursday, August 29

Welcome to

Whatsername03, for whom sleep is very difficult, traveling is miserable and she gets terrible anxiety fearing RLS symptoms while traveling. She has symptoms in her legs and arms and even gets symptoms through out the day. She will be using this resource to help find quality of life and support. She also suffers from fibromyalgia and interstitial cystitis.

Please post a note telling us what you are currently doing to manage your RLS so that we will know where to start with suggestions for improving your quality of life.
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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