MAY 2016 - 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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Location: Pueblo, Colorado

Re: MAY 2016 - NEW MEMBERS

Postby Rustsmith » Thu May 19, 2016 1:59 am

Wednesday, May 18

Welcome today to

JennW, who has dealt with this for as long as she can remember. Had no idea what was wrong as a child or for most of her adult life and is now in her 40's and has just recently received a possible diagnosis of RLS.

I wish that this was an unusual story, but it is not. Take a look around, particularly at the first topic in this forum. If you cannot find everything that you need, feel free to post a note with 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: 3008
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: MAY 2016 - NEW MEMBERS

Postby Rustsmith » Fri May 20, 2016 1:41 am

Thursday, May 19

Welcome to

Shanenkrat, who Idiscovered last year that rls has been the source of sleep problems for years.. Shanenkrat is now having a difficult time finding a healthcare provider that understands this issue, and can/will help.

Take a look around for information that you can share with your doctors or for suggestions about what sort of doctors you might have better success with. And feel free to post a note asking any questions 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: 3008
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: MAY 2016 - NEW MEMBERS

Postby Rustsmith » Mon May 23, 2016 1:38 pm

Monday, May 23

Welcome to

Beckonwood2, who has suffered from RLS for years and is always looking for help with new medications as well as other devices for RLS

We should be able to help along those lines. If you don't find what you are looking for, please post a note with any questions that you have.

and to

bfleet, who has RLS and is looking for treatment.

Please take a look around and then post a note to let us know what we can do to 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: 3008
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: MAY 2016 - NEW MEMBERS

Postby Rustsmith » Wed May 25, 2016 10:10 pm

Wednesday, May 25

Welcome today to

cathysuzanne, whose Restless Legs Syndrome is wrecking her sleep and disposition!

That goes for all of us here on the discussion board. Look around to see if you can find something useful and then feel free to post a note asking any questions or providing any comments 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: 3008
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: MAY 2016 - NEW MEMBERS

Postby Rustsmith » Thu May 26, 2016 7:18 pm

Thursday, May 26

Welcome to

susbrown215, who says that she has to accept that she will not always get a good night's sleep, will experience discomfort at night if not treated and that medications for RLS are sometimes worse than the original condition.

There are always alternative treatments to whatever you have tried. Take a look through our discussions to get an idea of options to discuss with your doctor and feel free to post a note with any questions that you have.

and to

cosmo, who is suffering with legs that will not rest with pain. The only way to get relief is by walking and taking painkillers. It's affecting walking the dog, sitting for any length of time, affecting quality of life.

Take a look around and hopefully you can find some suggestions that will help. And feel free to post a note with any questions or comments 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.

badnights
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Location: Northwest Territories, Canada

Re: MAY 2016 - NEW MEMBERS

Postby badnights » Fri May 27, 2016 9:50 am

Friday May 27
Welcome to rlstader, whose RLS/WED got much worse after a knee replacement, and is now refractory and severe.
rlstader, you say you think your life will never be the same again, but for the vast majority of us, our lives improve to something close to the same, something much better than what you're going through now.

Begin by learning as much as you can about this disease - a good place to start is the topic called "A good place to start" in this Just Joined forum. With knowledge, you can avoid triggers, adapt your habits, and know which medications are worth trying and what to do before starting any medications - like have your ferritin levels checked. If your ferritin is less than 75 or so, a daily oral iron supplement can reduce symptoms from severe to moderate. If your vitamin D levels are low, taking a D supplement can help.

Your doctor can prescribe medication for you, but one of the key things you will learn on this site is that most doctors, including neurologists and sleep specialists, don't know enough to treat severe refractory WED/RLS successfully - although most are willing to learn, too. So you need to learn, so that you can guide their learning, and recognize if something they suggest is dangerous.

The main dangers to watch for are associated with the class of medications called dopamine agonists, of which three currently are used widely to treat WED/RLS: pramipexole/Mirapex, ropinirole/Requip, and rotigotine/Neupro (a skin patch), and another dopamine medication called levo-carbidopa/Sinmet. (The second word, after the slash, is the brand name.) The main things to know about these medications, if your doctor recommends one, are as follows:
- DAs will eventually worsen the RLS/WED in roughly 75% of people - this is called augmentation (the medication that is supposed to help you actually augments the disease).
- higher DA doses are more likely to cause augmentation
- people with low ferritin are more likely to augment on DAs, so get your ferritin checked BEFORE you start a DA. Take oral iron (as long as there is no medical reason you shouldn't) to get your ferritin above 75, or preferably 100.
- augmentation is hell on earth. It is RLS/WED worse than what you feel now.
- levo-carbidopa/Sinemet is not to be used daily. It can be useful as a supplementary therapy taken now and then, but augmentation rates for Sinemet are even worse than for DAs
- the maximum recommended dosages of DAs for WED/RLS are much less than for Parkinson's (the disease most doctors use them for). See the Buchfuhrer paper in the link in my signature line for the source of this recommendation: pramipexole max daily dose for WED is only 0.25 mg, and for ropinirole is 1 mg.

There is a Forum dedicated to physical tricks to deal with the symptoms, another dedicated to non-prescription treatments like the iron and D I mentioned, as well as dietary changes that people have found work for them. And there is a forum dedicated to prescription medications. There are a lot of knowledgeable people here, and especially important, people who know what you're suffering through right now. You can find hope here, and begin the journey to find relief.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
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Posts: 3008
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: MAY 2016 - NEW MEMBERS

Postby Rustsmith » Fri May 27, 2016 9:27 pm

Friday, May 27

Welcome today to

Jean, who has had RLS for 40 years, her Mother and Grandmother had it but she manages without medications. When she gets older will consider medication.

Take a look around to get an idea of what your options are and what non-prescription approaches you can try. If you have any questions, please post a note and ask.
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
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Posts: 15092
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: MAY 2016 - NEW MEMBERS

Postby ViewsAskew » Sat May 28, 2016 7:30 am

Saturday, May 28

Please welcome:

Tiffe, who moves all night long and finds RLS/WED severely disrupts life.

It does, doesn't it! There are many options, poke around and see what you find. We are here to help if we can.

and to

Rcure, who has just recently been dagnosed with RLS but has been living with it for years. It only recently started causing discomfort 24hr a day. Rcure is here to get information on the disease and to improve quality of life.

Take a look around and if you don't find what you need, please feel free to post a note with any questions.
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.

Rustsmith
Moderator
Posts: 3008
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: MAY 2016 - NEW MEMBERS

Postby Rustsmith » Sun May 29, 2016 4:25 pm

Sunday, May 29

Welcome today to

mjroberts, who just began to have RLS symptoms and would like the connect with others on alternate therapies.

Take a look around, you might be particularly interested in the discussion threads in the Physical Treatments and Non-Prescription forums. And if you don't find what you are looking for, please feel free to post a note asking any questions that you have.

and to

BrettTwin, who has sleepness nights 2 or three times a week is often exhausted and ometimes can't even fall asleep due to being anxious, waiting for it to begin!

Brett, we all know the feeling. Take a look around to see if you can find something useful to you. 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.

Rustsmith
Moderator
Posts: 3008
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: MAY 2016 - NEW MEMBERS

Postby Rustsmith » Tue May 31, 2016 11:33 am

Tuesday, May 31

Welcome today to

MaggieM, who has RLS and takes pramipexole (1 mg), Lyrica (75 mg) and Gralise (600 mg) a day. Her doctor sent her to a vein doctor who wants to cure her RLS with surgery and she was wondering if anyone has heard of such a thing.

Take a look around. You will find a few postings about varicose vein surgery, including some recent research on the subject. But it is not something that many of us have experience with. And please feel free to post a note asking about this or any other questions that you have. That should generate a few responses.

and

HistoryProf, who has been suffering from RLS for about a decade and find that it affects sleep and overall health.

Once you have had a chance to look around, feel free to post a note with any questions or comments that you have.

and

jeffkisme, whose RLS has made life miserable for years.

See what you find that may be helpful and then feel free to post a note with 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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