NOVEMBER 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
Moderator
Posts: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mcnulty

Postby Rustsmith » Mon Nov 12, 2018 8:38 pm

Monday, November 12

Welcome to

mcnulty, whose RLS began about 4 months ago. It begins just after lying down to sleep and can go on for hours. It is often relieved by gettin up and stretching Achilles' tendons. mcnulty has tried a lot of the usual non pharmaceutical remedies, but with not much success.

Iron supplements help many, but should only be started under a doctor's supervision since too much iron can be toxic. Besides stretching, soaking in very hot (or cold) water also seems to help turn things off temporarily. Beyond that, most of us either depend upon medications provided by our doctor, marijuana or kratom.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Malia

Postby Rustsmith » Mon Nov 12, 2018 10:56 pm

Monday, November 12

Welcome to

Malia, who has had RLS for approximately 50 years. It started out slowly and built until now she experiences it almost every night. Even with medication, she doesn't sleep well or very long so she's constantly tired. This disease is very, very difficult to explain to someone who knows nothing about it. So, she is looking forward to being able to talk about it with people who know what it is.

Please post a note telling us a bit about what you are doing to manage your RLS and asking any questions that you have. We look forward to chatting with 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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to bjoyful

Postby Rustsmith » Tue Nov 13, 2018 4:49 pm

Tuesday, November 13

Welcome to

bejoyful, who has been suffering with restless legs for over 15 years and so is not sleeping much and has a hard time even going to sleep because of legs.

Please post a note telling us what you are doing to manage your RLS and asking any questions you have so that we can offer some suggestions for improvement.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to pmoran

Postby Rustsmith » Tue Nov 13, 2018 4:53 pm

Tuesday, November 13

Welcome to

pmoran, who has had restless legs for over 20 years. pmoran is having issues with augmentation in that symptoms now start in the morning and continue throughout the day and now include the arms. pmoran is having trouble with anxiety and would appreciate being part of this community.

Please tell us about which dopamine agonist you are taking, the dose and if you are taking any other medications. Also feel free to ask any questions. We would love to give you some suggestions and comments on what you can expect with resolving the augmentation as well as addressing the anxiety.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to keitha

Postby Rustsmith » Wed Nov 14, 2018 4:15 am

Tuesday, November 13

Welcome to

keitha, who has suffered from RLS for the past 25 years and feels like it is suffering in silence because everyone around has no idea what it is like. The insomnia caused by this disease has created numerous problems in keitha's life.

You have found a group who understand what you have been going through. Please post a note telling us about what you are doing to manage your RLS or simply join in any of our ongoing discussions.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jcg64

Postby Rustsmith » Wed Nov 14, 2018 4:18 am

Tuesday, November 13

Welcome to

Jcg64, who has suffered from severe RLS/PLM most of Jcg's life. The only treatment that has worked is oxycodone. Jcg would like to learn what others are doing to cope with this disability and possibly try other methods to control the pain/disorder.

Feel free to look around and please post a note telling us about other things that you have tried. We would be happy to share info about our own treatments and tricks for managing our symptoms.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to jp190

Postby Rustsmith » Wed Nov 14, 2018 4:20 am

Tuesday, November 13

Welcome to

jp190, who has had RLS for over 10 years but is having more trouble recently. jp190 has not started "RLS" meds but uses Xanax 1 mg qhs, but wants to make changes and so would like to hear what others have tried.

You name it, one of us has tried it. But if you post a note with your question, we will all be glad to provide "brief" histories of what has worked with our treatments, where we are now as well as the current treatment guidance from the RLS experts.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to browneyesblue

Postby Rustsmith » Wed Nov 14, 2018 10:36 pm

Wednesday, November 14

Welcome to

browneyesblue, who has had RLS all browneye's lifetime and it is now uncontrollable. All the available drugs have been maxed out, so browneyes is at the end of the rope!

Please post a note telling us which meds you have maxed out. The experience of our members is that there is always something else that can be tried with the support of a knowledgeable physician. So, please let us throw you a lifeline and extend that rope.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to SxSueMn

Postby Rustsmith » Thu Nov 15, 2018 5:06 pm

Thursday, November 15

Welcome to

SxSueMn, who suffers with spinal stenosis and takes ropinirole 2x/day.

Please post a note telling us if you have a diagnosis of RLS, how much ropinirole you are taking and asking any questions that you have. We would love to be able 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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to dscott151

Postby Rustsmith » Thu Nov 15, 2018 10:44 pm

Thursday, November 15

Welcome to

dscott151, who has had RLS for many years, has tried several drugs and has had augmentation with them. Today the best treatment is Oxycodone but still have some really bad nights. It is now also during the day sometimes and in dscott's back also. The worst thing is getting by on very little good sleep for many years.

Please feel free to post a note telling us a bit more about your use of oxy. A number of us have found that we need to use a combination of medications, so possibly something in addition to the oxy would help.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Crazylegs26

Postby Rustsmith » Tue Nov 20, 2018 2:18 pm

Tuesday, November 20

Welcome to

Crazylegs26, who went from having RLS at night, almost daily to having a raging, unstoppable, insanity causing case of all day everyday RLS with it affecting her entire body. She doesn't have health insurance and desperately needs help to end the nightly river dancing as her husband calls it.... Please help!!!!

Please post a note telling us if you are currently taking any medication and the dose. We can offer advice, but need to have a better idea of where you stand.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Cinderella

Postby Rustsmith » Tue Nov 20, 2018 2:21 pm

Tuesday, November 20

Welcome to

Cinderella, whose RLS has stolen her restful sleep but finds it to be worse during the day rather than the night! It's bad at night too!

Please post a note telling us what you are doing to manage your RLS. If you are taking a medication, please tell us what you are taking and how much. We should be able to offer you a suggestion about how to improve both your daytime and nighttime issues.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to strobee

Postby Rustsmith » Tue Nov 20, 2018 2:25 pm

Tuesday, November 20

Welcome to

strobee, whose RLS has affected life in numerous ways. strobee is unable to sit and watch TV in the evening without having to stand up and walk around. Sleeping is a complete disaster........about an hour after falling asleep strobee is wakened by RLS and has to get up AGAIN and AGAIN and to walk around in the middle of the night.

That sound a lot like my night last night! Please post a note telling us if you are taking anything to manage your RLS so that we can offer some suggestions for improving 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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to WRP

Postby Rustsmith » Thu Nov 22, 2018 2:54 am

Wednesday, November 21

Welcome to

WRP, who often is unable to sit or even sleep due to the discomfort from RLS. WRP is unable to find over the counter, natural, homeopathic or medically prescribed help to bring comfort and is very interested in learning from others what works for them in dealing with this miserable RLS issue.

Please post a note telling us more about your RLS symptoms. You will find that almost all of us are taking some sort of medication and that we are familiar with what does and does not work.
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: 4033
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to benjinlai

Postby Rustsmith » Fri Nov 23, 2018 4:28 pm

Friday, November 23

Welcome to

benjinlai, who has a history of RLS for more than 10 years. A severe case. Initially with .25 mg of pramipexole, result was poor, about a year increased gradually to 1 mg. This allowed sleep. Recently the medicine begin to lose the power. So, benjinlai wonders what options are available for me?

At 1mg, you are at the max FDA approved dose for pramipexole and at 4x the max that is recommended by the experts. You are quite probably experiencing augmentation. To get an idea of what that involves, take a look at our forum on Augmentation. As for options available, there are quite a few, so if you will post a note telling us a bit about your current symptoms, we can offer you some comments as well as info on where you can take your treatments from here.
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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