MARCH 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcomt to tickles2death

Postby Rustsmith » Sun Mar 10, 2019 3:08 pm

Sunday, March 10

Welcome to

tickled2death, whose RLS has gotten worse although on medication. It doesn't happen all the time, but when it does tickeled2death would trade it for a root canal. Looking to learn from others.

Please post a note telling us about your medication and dose and asking any questions that you have. We may be able to offer some suggestions to improve the control of 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to nivlag

Postby Rustsmith » Sun Mar 10, 2019 10:08 pm

Sunday, March 10

Welcome to

nivlag, who first had RLS when she was pregnant. She remembers describing it to her ob/gyn, and he looked at her like she was crazy. After having the baby it went away but came back again and has been really bad in my 40's and now 50's. She has tried just about everything so hoping to find out what has worked for others. She was put on the low dosage for Parkinson's which did help, but the doctor just wanted her to keep coming back. There had no side effects and the doctor is 45 minutes drive. She travels a lot for her job so when she is home she has a lot of computer work, house work, etc. that she needs to catch up on. She already goes to several doctors and didn't want to have to go every 3 months just to say yes, I'm doing ok. She can probably find someone closer but would prefer not to have to take another drug for something IF POSSIBLE.

We can all relate to your issue with your doctor. Please post a note telling us whether your doctor every did blood work to check your ferritin level as well as which Parkinson's drug you were taking along with the dose. There are other treatments available, but it may need to do a bit of hunting to find a doctor who is close and can provide you with what you need.
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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to muzickman

Postby Rustsmith » Sun Mar 10, 2019 10:11 pm

Sunday, March 10

Welcome to

muzickman, who at the age of 60 has endured the perils of full blown RLS. Unfortunately he falls into the 2-3 % who have the disease at its worst! Have had it since he was 10 years old. For those of you who have to endure the torturous and painful hours of misery, my heart goes out to you. it's taken over my life now! But...................................................... NOBODY UNDERSTANDS except us !!! Isnt that right! we need a Michael J.Fox Too!!!

You will find that most of us on the board are also in the small percentage with severe RLS. Serious cases seem to gravitate to us. So, please tell us what you are doing to manage your RLS these days. Maybe our collective experience can suggest something new 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to skihunt507

Postby Rustsmith » Sun Mar 10, 2019 10:14 pm

Sunday, March 10

Welcome to

skihunt507, whose husband, along with several friends, have RLS. She needs to learn more about it. He has had it for years but it seems to be getting worse. He doesn't really seem to have any interest in learning about it and definitely he is depressed and having some other issues.

Please post a note telling us if he is doing anything to manage his RLS. And feel free to ask as many questions as you want. We would love to get the opportunity to help the two of 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Sue Ellen

Postby Rustsmith » Mon Mar 11, 2019 2:44 pm

Monday, March 11

Welcome to

Sue Ellen, whose RLS affects her life in so many ways. Her ability to travel, sitting in the evening hoping to read, waking her up too early in the a.m. She is very frustrated and the meds she takes are no longer as effective.

Please post a note telling us about those meds and the dose. You may be experiencing augmentation and if so, we can explain what needs to be done to get better control of 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to dkr

Postby Rustsmith » Mon Mar 11, 2019 2:46 pm

Monday, March 11

Welcome to

dkr, whose RLS is basically making her life hell. For 15+ years it was managed, and manageable with Mirapex. Unfortunately, she has recently learned the downside of that with augmentation. She is past that but am unable to find an alternative, and non-medical treatments do not seem to be effective either.

Please post a note telling us what you have tried so that we can give you some suggestions of things that will 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to paul9298

Postby Rustsmith » Mon Mar 11, 2019 8:20 pm

Monday, March 11

Welcome to

paul9298, who has just been dignoised. He is feeling uncomfortable legs and arms and having involuntry limb movements at night.

Sorry that you need us, but glad you found us. Please post a note telling us what you doctor has prescribed 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.

Polar Bear
Moderator
Posts: 7552
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: MARCH 2019 - New Members

Postby Polar Bear » Tue Mar 12, 2019 12:55 pm

Tuesday 12 March 2019

Welcome today to:

samairahsethi - who wants to share knowledge and to gain more knowledge.

Our discussion board is a wonderful place to learn about RLS. Please post telling us about your RLS and how you have coped to date.
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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to amandawolf9

Postby Rustsmith » Tue Mar 12, 2019 7:23 pm

Tuesday, March 12

Welcome to

amandawolf9, who needd help with RLS symptoms and info on different treatments.

Please post a note telling us about what you are currently doing for your RLS so that we can offer you some 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Janet Buschert

Postby Rustsmith » Tue Mar 12, 2019 10:31 pm

Tuesday, March 12

Welcome to

Janet Buschert, whose husband has had RLS for much of his life. It is so hard to watch him struggle to control the symptoms of his condition and to know that it's difficult for me to find new ways to help him. It's limited in some ways the things we can do - we can't cross country ski into a yurt with friends anymore, for example, because he does not know if he'll be able to sleep. But he is very kind and understanding about his condition - she is not sure she could be that way if she had his condition.

Please post a note telling us what he is doing to manage his RLS. Although many of us have had to give things up, there are ways to manage and retain a reasonable quality of life. We would love to be able to help the two of 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jmuiderman

Postby Rustsmith » Wed Mar 13, 2019 8:04 pm

Wednesday, March 13

Welcome to

Jmuiderman, who is ready to learn about other folks experience with RLS. Jmuiderman has been trying to get rid of them for so long now and is ready to have some support and help with that process.

Please post a note telling us about what you are doing to manage your RLS and asking any questions that you have. We are a very sharing bunch and would love to be able to help you out in that regard.
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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to prescottgal

Postby Rustsmith » Thu Mar 14, 2019 12:31 am

Wednesday, March 13

Welcome to

prescottgal, whose RLS has totally destroyed her day-to-day life. No longer can she plan to do anything before around 11:00am. It is becoming worse as she grows older. She is 88 now and feels as though she is being tortured with sleep deprivation.

Many of us describe our RLS as torture, so you are not alone in that. Please post a note telling us what you are doing to manage your RLS so that we can offer you some suggestions on how to regain control of your day-to-day 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Redram2002

Postby Rustsmith » Thu Mar 14, 2019 12:36 am

Wednesday, March 13

Welcome to

Redram2002, who ever since chemo has bad RLS. All normal meds don't work and Redram's doctor don't want to use an opioid. Llittle much sleep is also causing depression to get worse. Just looking for any kind of insight that may help.

Please post a note telling us about the medications that you have tried. We can offer you some specific comments at that point, which could involve what you need to do to find a different 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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Artlace

Postby Rustsmith » Thu Mar 14, 2019 1:31 am

Wednesday, March 13

Welcome to

Artlace, who has just started having RLS recently and was thinking it's due to her total hysterectomy.

RLS is a neurological problem, however it is related to iron levels which could be associated with your surgery. Your first step should be to ask your doctor to run blood work to check on your iron levels and particularly your ferritin, which has to be requested separately. Make certain that you find out the value for your ferritin and don't simply accept "normal" since normal for most people is anything over 20, but for those of us with RLS it should be closer to 100.
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: 4084
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Nynightwalker

Postby Rustsmith » Thu Mar 14, 2019 1:14 pm

Thursday, March 14

Welcome to

Nynightwalker, who cannot sleep due to RLS, no sitting for any length of time. Airline flights need to be multi stop. It causes depression,anxiety and stress on marriage. Nobody understands. Now Nynitwalker has it in the arms occasionally and has run out of options for relief.

Please post a note telling us what medication and dose you are taking for your RLS. We can probably offer some new options for you to consider.
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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