AUGUST 2020 - 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
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Posts: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

AUGUST 2020 - New Members

Post by Rustsmith »

August 1

Welcome to

Farmer, who has been battling RLS for 6 years and wants to share in discussions on medications and augmentation.

We would love to hear about your experience, just post a note to get thing started.
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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to edebitetto

Post by Rustsmith »

Sunday, August 2

Welcome to edebitetto, who is a 57 year old female/ triathlete (swim/bike/run) sport enthusiast suffering from RLS. It is not controlled at this point in time. Educating herself to better understand how she can take control of it has become a priority as it is affecting the quality of daily life. You cannot imagine how debilitating this can be unless you are experiencing it firsthand. It is awful.

If you are willing to post a note telling us what you are currently doing for your RLS, we would be happy to help. (By the way, I am a retired competitive runner - primarily marathons and 800m).
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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to wandaRLSfourm

Post by Rustsmith »

Sunday, August 2

Welcome to

wandaRLSforum, who wants to communicate with others who have RLS to share ideas and support.

Feel free to post a note to start communicating with others or simply join in an existing discussion.
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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to letasnow

Post by Rustsmith »

Sunday, August 2

Welcome to

letasnow, whose RLS has ruined her life! She has changed the way she lives.

If you are willing to post a note telling us what you are doing to manage your symptoms, we may be able to offer you some suggestions for improving things.
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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to kmkrls

Post by Rustsmith »

Monday, August 3

Welcome to

kmkrls, who suffers from chronic severe RLS. It had changed the quality of her life. She is exhausted everyday. It stresses her out terribly.

We would love to be able to offer you some suggestions for improvement, but we can only do that if you are comfortable with posting a note telling us what you are taking for your 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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to boomerang

Post by Rustsmith »

Monday, August 3

Welcome to

boomerang, who has had RLS since she can remember, but symptoms have gotten downright terrible the past 3 years. She is currently taking medication but not happy about it.

If you would be willing to tell us a bit about your meds, we might be able to offer some suggestions or comments that might be of 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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to sunshinejane

Post by Rustsmith »

Tuesday, August 4

Welcome to

sunshinejane, who has had RLS all her adult life. It developed into Augmentation. The RLS developed to other parts of her body and was with her 24/7. She now has complete relief using opioids.

Most of us have been through augmentation and now are on opioids. If you have any questions, feel free to post a note with them or simply join one of our discussion threads.
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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Kimmy22

Post by Rustsmith »

Wednesday, August 5

Welcome to

Kimmy22, whose RLS started 29 years ago and has progressively gotten worse over the years. This condition is 100% ruining her life. Her RLS is aggressive. It is very violent and painful aside from the fact that it boosts her heart rate every time it happens. She has been on SO many different medications that she is starting to feel like a pharmacy. Augmentation happens within 3 - 4 months. The side effects are horrible as well. She is reaching rock bottom fast and don't know what to do!

Our experience is that there is always something new to try, especially for those who have been through augmentation. If you would be willing to post a summary of the latest meds that you have tried and why they didn't work, we can probably provide you with some suggestions of things 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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to twalker

Post by Rustsmith »

Wednesday, August 5

Welcome to

twalker, who has had neuropathy (treated with gabapentin) and mild RLS for 4 years. Recently his RLS has gotten worse and ropinirole has been prescribed. Oddly enough, he has also been diagnosed with ADHD and is currently taking adderall on a titrating schedule. Recently the RLS symptoms have been so extreme that he is questioning whether the abillity to tolerate this disease. He is 69 with an extensive list of medical injuries and surgeries. Aside from that, he is a very active outdoorsman with a passion for fishing the flats from his kayak and cannot accept multiple sleep disturbances (20+) and walking the street or his house at night as the new replacement for his recreational activities.

Is the ropinerole helping? Did your doctor check your ferritin level? There are so many things that we can suggest for someone who is just getting to the point of requiring treatment. If you will post a note, we can start a discussion 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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Noisyman54

Post by Rustsmith »

Wednesday, August 5

Welcome to

Noisyman54, who is miserable every night and it has been that way for the past twenty plus years. Various doctors have put him on various RLS medications without success. He has had to endure the pain of augmentation. Doctors around his area don't seem to get understand.

Unfortunately, far too many doctors do not have enough knowledge of RLS to be able to treat all but the mildest of RLS cases. If you would be willing to post a note telling us about what meds you have tried, we should be able to suggest somethings to discuss with your doctor or maybe even what you should do to expand your search for a doctor who "gets it".
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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to josko

Post by Rustsmith »

Thursday, August 6

Welcome to

josko, who would like to explore other people’s experiences treatments etc as josko's RLS is torture at night and often during the day.

We would be happy to provide comments about our treatments beyond what you can find in our files if you will post a note asking any questions that youo 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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to AmberMooney

Post by Rustsmith »

Friday, August 7

Welcome to

AmberMooney, whose RLS keeps her up at night all the time. She wants to find treatments and helpful tips.

You will find loads of information about the treatments that work (and those that do not) as well as tips for managing symptoms when your meds don't function as well as they should. If you have any questions, feel free to post a message and ask whatever you want.
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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Walt_M

Post by Rustsmith »

Saturday, August 8

Welcome to

Walt_M, who has been plagued bye RLS from a very young age 5 or 6 from memory. It has increased in severity as the years pass and now at 69 years old it has become fairly intolerable and has become a 7 nights a week problem. By joining this forum he is hopeful that the experience of others that have RLS will help as the doctors he has been to see have been little or no help.

It is unfortunate that so many doctors are ignorant when it comes to how to properly treat patients with RLS. If you are willing to post a note telling us about what treatments you have tried and/or 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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Jacko74

Post by Rustsmith »

Saturday, August 8

Welcome to

Jacko74, who is retired, wants to sleep better & doesn’t want to take medication.

There are several options for managing RLS without meds for those whose symptoms are rather mild. If your ferritin level is low, then taking an oral iron supplement might help (but only do this under doctor's supervision since too much iron can damage organs). We also have a number of treatments under our forums on Physical Treatments and Non-prescription meds that might help. These sections also document some of the things that don't work, which can be just as important to know.
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: 4716
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to LH74

Post by Rustsmith »

Sunday, August 9

Welcome to

LH74, who wants to connect with others who are dealing with RLS related to medication discontinuation.

We would be happy to help you with that. If you will post a note telling us a bit about your medication discontinuation you will get some responses with comments and/or suggestions from our members.
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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