APRIL 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
Moderator
Posts: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Amro

Postby Rustsmith » Wed Apr 24, 2019 1:11 pm

Wednesday, April 24

Welcome to

Amro, who has severed PLMD and Amro's young child also has PLMD. This condition has caused considerable suffering and seems to have gotten worse with age (or on medication!). It's good to find a forum where other people understand the impact of RLS/PLMD on one's life.

Please post a note telling us about your medication (and the dose) since it is possible that it is contributing to the worsening of your PLMD.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to LollyG

Postby Rustsmith » Wed Apr 24, 2019 1:14 pm

Wednesday, April 24

Welcome to

LollyG, whose RLS effects mobility, sleep, moods and life.

Please post a note telling us what you are doing to manage your RLS and a bit about the severity of your symptoms. We would love to be able to help you improve your sleep, moods and 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.

Rustsmith
Moderator
Posts: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Cathy469

Postby Rustsmith » Wed Apr 24, 2019 1:18 pm

Wednesday, April 24

Welcome to

Cathy469, who has severe restless leg. She can’t find a doctor who can help and doesn’t know what to do.

If you will post a note telling us to give us an idea about where you are located, we can offer some suggestions about how you can find a doctor who can help. It may involve some travel, but finding a doctor who understands how RLS should be treated can be life changing.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to bertolinnc

Postby Rustsmith » Wed Apr 24, 2019 4:33 pm

Wednesday, April 24

Welcome to

bertolinnc, who has had RLS for many years, and is taking pramipexole to control it, which works fairly well. However there are some side effects. bertolinnc wants to join this discussion board to learn what other approaches people have used to help reduce symptoms/side effects.

Please post a note asking whatever questions that you have so that we can 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Rosemary

Postby Rustsmith » Wed Apr 24, 2019 10:05 pm

Wednesday, April 24

Welcome to

Rosemary, whose husband has RLS. He has tried many different things to help but nothing seems to work. He has had it for about 35 years.

Please post a note telling us about any medications that he has tried and whether he has had the ferritin levels of his blood checked. We would love to be able to offer you some specific suggestions, but we need to know a bit 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Pink Susan

Postby Rustsmith » Thu Apr 25, 2019 1:03 pm

Thursday, April 25

Welcome to

Pink Susan, whose RLS is ruining her life. She was diagnosed in her 40’s and now that she is in her 60’s it’s so much worse.

Please post a note telling us about what you are doing to manage your RLS. And yes, RLS is one of those conditions that gets worse as we get older.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to porties2

Postby Rustsmith » Sat Apr 27, 2019 6:33 pm

Saturday, April 27

Welcome to

porties2, who got addicted to an opiate that she took for RLS. She also tried other pharmaceuticals (Gabapentin) for RLS. All led to difficult side effects and terrible withdrawals. She needs a natural way to treat RLS that works!!

Take a look at our forums on Non-Prescription Medications and Physical Treatments to get an idea of the very limited number of options available that meet your requirements.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to szucker2nd

Postby Rustsmith » Sun Apr 28, 2019 4:39 pm

Sunday, April 28

Welcome to

szucker2nd, who has suffered from RLS since 1985. Over the years, szucker has tried numerous medicines (gabapentin, pramipexole - both immediate and time release, and ropinirole). Most were initially effective - and then augmentation set in. It was truly hopeless. szucker was eventually prescribed an opioid - and this helped dramatically.

Your experience is very similar to most of us. Years of ups and downs until finally getting an opioid. Please feel free to post a note with any questions that you have or simply join into one of our existing 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Psimonson

Postby Rustsmith » Sun Apr 28, 2019 11:22 pm

Sunday, April 28

Welcome to

Psimonson, who has had RLS for years and needs some new options to help. Psimonson has tried every one and is so depressed.

Please post a note telling us about the options that you have tried so that we can know what to suggest. Experience has shown that there is always something else to try.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jblossom

Postby Rustsmith » Mon Apr 29, 2019 2:28 pm

Monday, April 29

Welcome to

Jblossom, who has always been an on and off restless leg sufferer but during pregnancy she gets it 40 weeks straight. All night :-(

The later stages or pregnancy are one of the causes of secondary RLS. There are ways that it can be treated so that you can get some sleep, but many doctors don't know this and obviously, it has to be done very carefully. You can find out more in our Special Populations forum. Or you can post a note and we can help provide you with some more answers to 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to aacoleman

Postby Rustsmith » Mon Apr 29, 2019 2:31 pm

Monday, April 29

Welcome to

aacoleman, who has suffered with RLS since birth, and remembers lying awake crying as a toddler while his mother massaged his legs, thinking that it was some kind of growing pains or cramps. He had pain throughout his entire body 24/7, and has measurable brain damage from the chronic lack of sleep. He has never known what it is to fall asleep next to another human being, because to lay still for more than a few minutes is excruciating.

Please post a note telling us what you are doing to manage your RLS. There is help that will provide you with a more normal life, but we need to know a bit more before we can offer you any specific 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to jerrymeadlucero

Postby Rustsmith » Mon Apr 29, 2019 3:08 pm

Monday, April 29

Welcome to

jerrymeadlucero, whose life was been turned upside down starting 3 weeks ago. Can't sleep. Can't drive. Had to stop working and doesn't want this to be life.

Have you consulted a doctor about this and if so, what are you doing to manage it? Please post a note telling us about these things and asking any questions that you have. There are ways to manage, but we need to have a better idea of your current situation in order to offer any specific 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to babu55

Postby Rustsmith » Mon Apr 29, 2019 3:55 pm

Monday, April 29

Welcome to

babu55, who has had RLS for many years. Had major problems with Augmentation and now has symptoms in his arms. He has great difficulty sleeping and symptoms have affected his days.

Please post a note telling us what you are doing to manage now, post augmentation. We should be able to 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to earthtostars

Postby Rustsmith » Mon Apr 29, 2019 4:19 pm

Monday, April 29

Welcome to

earthtostars, who is an RLS sufferer and is trying to find methods for relief based on meds or supplements.

Please post a note telling us what you have tried. There are loads of things that we can suggest 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to CindyPatt

Postby Rustsmith » Tue Apr 30, 2019 10:08 pm

Tuesday, April 30

Welcome to

CindyPatt, whose RLS has affected her sleep as well as what she is able to do. Traveling is difficult; especially flying in an airplane or being confined in a car or bus. She never feels fully rested and fears going anywhere that she may be confined to a seat.

Please post a note telling us if you are taking any medication for your RLS and if so, what you are taking and how much. There are ways to improve your situation, but we need to know more before we can offer any 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.


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