RLS related

For everything and anything else not covered in the other RLS/WED sections.
Polar Bear
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Re: RLS related

Postby Polar Bear » Sun May 07, 2017 12:22 pm

legs - thank you very much.

Now... you're gonna go and make me well up !! :wave:
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

mikereyes001
Posts: 14
Joined: Wed Aug 14, 2013 5:15 pm

Re: RLS related

Postby mikereyes001 » Sun May 07, 2017 4:01 pm

Yes, the driving issue is a big deal too. My wife is always asking me if I am ok to drive. I try to take it slow on the road

My doctor did suggest a stimulant in the past (D-Amphetamine Salt Combo...aka...Adderall?) and I didn't see any effect. I would certainly be willing to try the others. I will keep them in mind. Thanks!

legsbestill
Posts: 315
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: RLS related

Postby legsbestill » Sun May 07, 2017 4:04 pm

I have been in that sleepless darkside. Visualizing anyone in there is enough to make a person well up and particularly you mods when you do so much for the rest of us. But then I got an image of one person holding up a candle and another lighting one and so forth until the darkside is punctuated with little lights. It was an immensely comforting image and exactly mirrors the feeling of discovering this forum.
In addition to all the personal suffering, one of the awful things with rls is that one feels so alone. You guys make us all feel part of a welcoming, caring, supportive community so that our rls becomes a door through which we can enter into a happy space rather than something only negative. In spite of a happy and full home life and caring family and friends, I felt there was no light for me until I found this forum.

ViewsAskew
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Location: Chicago

Re: RLS related

Postby ViewsAskew » Sun May 07, 2017 5:08 pm

legsbestill wrote:I have been in that sleepless darkside. Visualizing anyone in there is enough to make a person well up and particularly you mods when you do so much for the rest of us. But then I got an image of one person holding up a candle and another lighting one and so forth until the darkside is punctuated with little lights. It was an immensely comforting image and exactly mirrors the feeling of discovering this forum.
In addition to all the personal suffering, one of the awful things with rls is that one feels so alone. You guys make us all feel part of a welcoming, caring, supportive community so that our rls becomes a door through which we can enter into a happy space rather than something only negative. In spite of a happy and full home life and caring family and friends, I felt there was no light for me until I found this forum.


My guess is that many of us felt exactly the same way...but likely couldn't express it so eloquently. Thanks for putting it into words that created an emotional imagery blanket that made me feel wrapped in connectedness and love.
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.

Polar Bear
Moderator
Posts: 6657
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: RLS related

Postby Polar Bear » Sun May 07, 2017 7:08 pm

Very well expressed - I can't hardly believe that it is 11 years since I found this haven.
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

badnights
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Location: Northwest Territories, Canada

Re: RLS related

Postby badnights » Mon May 08, 2017 8:18 am

I felt the same way when I found this place. Such love and warmth. So much knowledge. The people here have saved my life, and this place is my anchor. There is no one else I can talk to about it.
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

yawny
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Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: RLS related

Postby yawny » Tue May 09, 2017 10:46 pm

legsbestill wrote:I have spent the evening flicking through the net and notice GHB mentioned frequently as a promoter of deep sleep (albeit with significant reservations). Has anybody tried this?


Legsbestill, the book The Fibro Manual (Liptan) mentions Xyrem, or sodium oxybate as being chemically related to GHB...the author, a doctor with Fibromyalgia, says "fibromyalgia is primarily a sleep disorder, a state of chronic deep-sleep deprivation." Sounds familiar! She says that by far the most effective medication is Xyrem which induces deep sleep. She used it herself for two months before it became unapproved by the FDA and says her symptoms improved significantly. She suggests alternatives and one is Baclofen (Lioresal), a distant cousin of Xyrem. She says Baclofen is a muscle relaxant and antispasmodic medication that increases GABA levels in the brain and total deep-sleep time. The other medication she mentions is Tiagabine (Gabitril).

Wanted to share just in case this is useful to you. Not sure if muscle relaxants are that great for RLS, but maybe you never know until you try.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS related

Postby ViewsAskew » Tue May 09, 2017 11:07 pm

Baclofen is one of the outlier meds that sometimes works for RLS. This could be why...

In the past, a few people used Xyrem...cannot remember the results. A search might provide more insight.
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.

legsbestill
Posts: 315
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: RLS related

Postby legsbestill » Wed May 10, 2017 9:43 am

Thanks so much for that, Yawny. Considering my symptoms are now fairly under control, there is no justification for the amount of sleep I am not getting and the marijuana really does not seem to be helping enough any more (which is a pity as my plants are coming along nicely).

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

Re: RLS related

Postby badnights » Thu May 11, 2017 6:07 am

indeed, thanks for that yawny
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


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