August 2017 - 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

August 2017 - New Members

Postby Rustsmith » Wed Aug 02, 2017 6:55 pm

Wednesday, August 2

Welcome to

Christysocol, who has suffered since 1964 and is taking Requip & Neurontin. She dreads going to bed and is looking for help.

Please post a note telling us a bit more about your meds, the doses and if there is anything else that you are doing to manage your RLS so that we might be able to 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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Tmyrick

Postby Rustsmith » Wed Aug 02, 2017 11:11 pm

Wednesday, August 2

Welcome to

Tmyrick, whose RLS has began to define who she is and is what she focuses on for a major part of each day. She also says that it is so hard to find a doctor much less a layperson who understands the full extent of its hold.

We can all relate to your situation and completely understand. Please post a note telling us what you are currently doing to manage your RLS 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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mallers807

Postby Rustsmith » Thu Aug 03, 2017 2:24 am

Wednesday, August 2

Welcome to

mallers807, whose RLS is interfering with sleep and is causing great distress.

After you have a chance to look around, please post a note telling us what you are doing to manage your RLS so that we can try 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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Feenstra

Postby Rustsmith » Fri Aug 04, 2017 12:45 pm

Friday, August 4

Welcome to

Feenstra, who is exhausted all the time and does not sleep well most nights.

After you have a chance to look around, please post a note telling us about your RLS, what you are doing to manage the symptoms 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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to WENDYKAT

Postby Rustsmith » Fri Aug 04, 2017 12:52 pm

Friday, August 4

Welcome to

WENDYKAT, who can't sleep, can't sit still and RLS is jeopardizing her employment. It is consuming her life, my time, comfort, hobbies.

Those are all issues that we can relate to. Please post a note telling us what you are currently doing to manage your RLS so that we can offer you some suggestions to improve 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.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to gaylem58

Postby badnights » Sat Aug 05, 2017 3:15 am

Gaylem58, welcome to the board. But so sorry that you have been suffering. You mentioned that you've been on Requip since 2009 and can't go a day without it. Have you read about augmentation, and how to treat it? Many doctors are still unfamiliar with augmentation, which is something unique to RLS/WED being treated with Requip and other dopamine agonists. It's a worsening of the WED/RLS symptoms caused by the very medication that is supposed to fix it. The worsening manifests as symptoms coming earlier in the day, spreading to other body parts, becoming more intense, or starting sooner after you sit or lie down.

It is sometimes hard to distinguish augmentation from natural progression of the disease, but if you can compare how you were before Requip to how you are now, how much worse is it? How much earlier in the day do your symptoms start? How much more of your body is affected?

Most people who have been taking a dopamine agonist (DA, for short) as long as you have are experiencing augmentation of the disease. The only way to deal with it for sure is to stop the DA, which precipitates even worse symptoms, for a time, before allowing the symptoms to fade back to the way they were before Requip, more or less. The withdrawal can be absolutely traumatic, especially if you don't know what to expect. It gets worse before it gets better, but it can never get better without going through that. The best way to get through it is with a doctor's help. A caring and knowledgeable doctor will prescribe short-term opioids to cover the withdrawal. How much does your doctor know about RLS/WED? Has he/she ever mentioned augmentation? Most doctors unfortunately simply raise the dose, making the problem worse, because they're not aware of augmentation.

There is another approach to dealing with augmentation, and that is to split your dose, taking part of it earlier in the day to deal with those symptoms. This approach is usually a stop-gap, but if it works, it might be the best course of action.

I recommend that you read up all you can on augmentation, so that you can decide if you think it's happening to you; then speak to your doctor about it. Go in to the appointment with some print-outs on augmentation in case the doctor has never heard of it, or doesn't know how to treat it (see the RLS Foundation's handouts; there are instructions on how to get at them in the link in my signature block under this post).

Another very important thing is to have your ferritin level measured. This is not usually done with an iron panel, so you will need to request it. If your doctor hasn't yet requested a ferritin test for you, that is a fairly reliable sign that he/she does not have enough knowledge about WED/RLS, and either he/she will need to learn, or you will need to find a new doctor who is willing to learn - or preferably, already knows. Your ferritin should be over 100; be careful if they tell you it's "normal", you need to get the actual number because "normal" for people without WED/RLS is 20 or more. For people with, it needs to be much higher.
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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to jms

Postby Rustsmith » Sun Aug 06, 2017 11:37 pm

Sunday, August 6

Welcome to

jms, who has had RLS all jms's life, but did not know what it was until 2000, when it became severe. jms has been taking requip since it came on the market and now takes 4mg of ropinerole. jms's doctor will not increase the dose.

Please take a look around, especially the forum on Augmentation since you are taking so much ropinirole. And please post a note telling us about your symptoms and asking any questions that you have so that we can offer some specific suggestions 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.

Rustsmith
Moderator
Posts: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Hillhurst

Postby Rustsmith » Tue Aug 08, 2017 7:19 pm

Tuesday, August 8

Welcome to

Hillhurst, who is the Program Coordinator for the RLS Foundation.
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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to catlafond

Postby Rustsmith » Wed Aug 09, 2017 12:52 am

Tuesday, August 8

Welcome to

catlafond, who has suffered from insomnia for years before diagnosis and the side effects of Mirapex scare her.

Please take a look around and then post a note telling us a bit more about your RLS and what you are doing to manage it. 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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mamamoves

Postby Rustsmith » Wed Aug 09, 2017 10:40 am

Wednesday, August 9

Welcome to

mamamoves, who wants to help her mother with her RLS.

Take a look around and then please post a note telling us about your mother's RLS and possibly your issues as well. And feel free to ask any questions that you have to that we can offer any help that 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.

Polar Bear
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Posts: 6699
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome - Steven1953

Postby Polar Bear » Thu Aug 10, 2017 6:53 pm

Welcome today 10th August to:

Steven 1953 - who has been living with RLS since 1984. He believes that it is important to stay connected with RLS Foundation for both the education and support elements.

That is a long time to be coping with RLS symptoms. You will find a lot of information in the Just Joined - A Good Place to Start: Managing RLS. We look forward to hearing how you have dealt with your condition over the years.
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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Steven1953

Postby Rustsmith » Thu Aug 10, 2017 9:31 pm

Thursday, August 10

Welcome to

Steven1953, who has been living with RLS since 1984 and believes that it is important to stay connected with the RLS Foundation for both the education and support elements.

Welcome to the discussion board. After you have a chance to look around a little, please post a note telling us a bit about your RLS, what you are doing to manage it and what we can do to assist you by answering questions.
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: 6699
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to tshardin

Postby Polar Bear » Fri Aug 11, 2017 12:56 pm

Friday 11th August

Welcome today to:

tshardin - whose mother has RLS and tshardin looking for help.

When you are ready please post and tell us how your mother has been coping, what medication (if any) she is taking. We are here to try to help.
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: 6699
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to romani008

Postby Polar Bear » Fri Aug 11, 2017 7:23 pm

Friday 11th August

Welcome to:

romani008 - who has lost jobs because RLS has prevented sleep.

We all understand how this can happen, take a look around the discussion board especially the Just Joined / A Good Place to Start - Managing RLS.
When you are ready we'd like to hear how you have been managing your symptoms, please ask questions and we will try to help.
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: 2454
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to vivienne34

Postby Rustsmith » Sun Aug 13, 2017 12:28 pm

Sunday, August 13

Welcome to

vivienne34, who joined the foundation when she was living in the US. She lived there for 32 years and had RLS symptoms for about the last 16 and then came back to her hometown Southampton, Hampshire, England, in August 2010. At that time her only medication was clonazepam 6 mg at night. It was effective but she was concerned at taking such a large dose. She discussed this with her GP and mentioned that she'd heard of ropinirole so they tried it: 0.25 mg with 0.5 mg clonazepam. That worked for about two years but then her symptoms worsened. Fortunately she had re-joined the Foundation and the literature made her realise that it was augmentation. No more ropinerole. Currently she is on 3 mg clonazepam at night and if that dose needs to be raised in the future, so be it. Currently she is totally symptom-free. Her GP and neurologist have both studied the Foundation literature. All kudos to the Foundation.

Welcome to the Foundation's discussion board. If you have any questions, feel free to ask or simply join in on one of the 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.


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