JUNE 2019 - 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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

JUNE 2019 - New Members

Postby Rustsmith » Sat Jun 01, 2019 1:21 pm

Saturday, June 1

Welcome to

annahleong, who would like to learn about others' experiences as she thinks she has RLS.

Diagnosis of RLS is done by answering a few questions. You can find those questions at http://irlssg.org/diagnostic-criteria/.

If you will post a note telling us about your symptoms and asking any questions that you have, we can tell you much more.
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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to msvalentine_99

Postby Rustsmith » Sat Jun 01, 2019 3:20 pm

Saturday, June 1

Welcome to

msvalentine_99, who has been diagnosed with RLS for 12 years and takes pramapexole 0.25 mg daily. msvalentine has 1 kidney and so tries to pay attention to all medications and over-the-counter supplements and how they are processed by the body. Physical symptoms have worsened in the past 3 or so years and so msvalentine doesn't get much satisfaction from discussions with the primary care Dr.

Your situation sounds a little bit like you may be starting to augment on the pramipexole. Please post a note telling us about the issues that you are currently having so that we can offer you some suggestions that you can take to 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.

ViewsAskew
Moderator
Posts: 15774
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome, Dorianne

Postby ViewsAskew » Sun Jun 02, 2019 12:12 am

Saturday 1st of June

Welcome to Dorianne, whose RLS has spread to the body, happens earlier each day, and has gotten wild in the body.

Dorianne, sounds like classic augmentation to me. Any chance you are taking pramipexole, ropinerole, or rotigitine? Please check out the information on augmentation, as well as introduce yourself by starting a new topic. We might be able to help!
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Polar Bear
Moderator
Posts: 7595
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome RachelRivera

Postby Polar Bear » Sun Jun 02, 2019 10:02 am

2 June 2019

Welcome today to:

RachelRivera who hasn't been officially diagosed with rls but does know that this is what has been driving her crazy at night for several years. She has problems sleeping and believes she have severe difficulies with rls.

Please do make a post, tell us how you have managed your symptoms over the past years. If you are not yet diagnosed have you been taking anything orallly to try to help. There are medications that can trigger rls symptoms.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Polar Bear
Moderator
Posts: 7595
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome o Texasbecky

Postby Polar Bear » Sun Jun 02, 2019 10:06 am

2 June 2018

Welcome today to:

Texasbecky who has severe restless leg syndrome since five years old and is now nearing 70. She has tried every treatment known. Now I go to John's Hopkins - Dr. Wo.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
Moderator
Posts: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to dtredo08

Postby Rustsmith » Mon Jun 03, 2019 1:52 am

Sunday, June 2

Welcome to

dtredo08, who thinks this is the worst case of RLS ever, 14plus years of suffering. dtredo can wake up to it and can spend hours upon hours hoping the meds will kick in, sometimes 4 to 6 hrs.. Ropinorole also causes nausea. So, dtredo is at desperate ends.

Please post a note telling us more about your meds, is it ropinirole? what is the dose? how long have you been taking it? It sounds a bit like you may be experiencing augmentation, which is a very common effect of taking ropinirole for long periods. We can help give you advice, but we need to know more specifics.
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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to bkhona

Postby Rustsmith » Tue Jun 04, 2019 4:09 pm

Tuesday, June 4

Welcome to

bkhona, who has RSL and is taking prescription medicine.

Please post a note telling us about your meds 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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to bennymutt

Postby Rustsmith » Tue Jun 04, 2019 4:15 pm

Tuesday, June 4

Welcome to

bennymutt, who can’t stand the feeling of restless legs, sleep problems, Requip works some days, other medicine never helped. Carbidopa/levadopa doesn’t really help. Constant back pain from disc degenerative disease. Sleep doctor tried other medicines but nothing helped bennymutt's legs. Only thing that helps is walking. At 68 bennymutt does not feel good, nausea daily, sometimes with light vomiting. No energy can’t do anything without feeling sick, or in pain or motion sickness daily.

What is your current dose of Requip? Could you be experiencing augmentation after all these years? And what other meds did you sleep doctor try? Experience has shown that there is always something else to try, but some doctors are afraid of using all the tools available to treat 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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to sl4878

Postby Rustsmith » Tue Jun 04, 2019 6:05 pm

Tuesday, June 4

Welcome to

sl4878, for whom probably the most negative problem with RLS is loss of sleep. Secondary is the difficulty sitting still at the end of day, which limits things like going to the movies, evening dinners, or any event that requires sitting still. sl4878 can't do long car rides, can't sit at the computer for too long, etc. Also sl4878 does not want to take these meds - they all have side effects that limit activities even more and since starting it has cause worry about augmentation - then what?

Please post a note telling us which meds (and dose) that you are taking and whether your doctor ordered a ferritin test. 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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to DebAtl

Postby Rustsmith » Tue Jun 04, 2019 11:03 pm

Tuesday, June 4

Welcome to

DebAtl, who has RLS and has had it for many years off and on. It has recently reoccurred with a vengeance. She is looking for treatment options.

Take a look around to get an idea of what works, and if you post a note telling us what you have tried, we can point you in the direction of the next options that should provide you with some relief.
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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to fuedboy

Postby Rustsmith » Wed Jun 05, 2019 2:10 pm

Wednesday, June 5

Welcome to

fuedboy, who has a 10 year case of RLS that has developed new symptoms and so fuedboy is wondering if anyone else is having them.

Please post a note telling us about your new symptoms and to let us know what medication your are using for your RLS so that we can provide you with the info that you seek.
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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to MusicLove&Faith

Postby Rustsmith » Wed Jun 05, 2019 2:13 pm

Wednesday, June 5

Welcome to

MusicLove&Faith, who having had Gillian Barre (another neurological illness), was also diagnosed with RLS. However, it has appeared in many parts of her body. She is aware that there are others who have also experienced what she has. And so she would appreciate the opportunity to share her situation as well as learn from others, as to theirs.

Please post a note telling us about your experience so that we can provide you with our comments.
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: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to williamssmith

Postby Rustsmith » Thu Jun 06, 2019 1:48 pm

Thursday, June 6

Welcome to

williamssmith, who is interested to joining in the board because he needs more knowledge and the gains that come from better knowledge.

Please post a note telling us about your RLS and asking any questions that you have so that we can help your gain that knowledge.
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.

Polar Bear
Moderator
Posts: 7595
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Nancyk

Postby Polar Bear » Fri Jun 07, 2019 5:34 pm

7th June 2019

Welcome today to:

Nancyk - who can't sleep at night. has to constantly move walk. can't go to church without legs acting up.

We totally understand your discomfort and how difficult it is to deal with your symptoms. Please post and tell us if you are taking any medication, how you have been coping. We always hope to be able to offer positive advice.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
Moderator
Posts: 4148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to LauraB

Postby Rustsmith » Sat Jun 08, 2019 12:19 am

Friday, June 7

Welcome to

LauraB, who has not yet officially diagnosed with RLS, but her doctor is sure this is the problem. The symptoms are getting worse, and she needs to find non-medicine ways to cope.

Take a look at our Non-prescription meds and Physical Treatments forums to get an idea of your non-medicine options. And feel free to post a note 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.


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