Finally somebody that understands RLS!!

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.
stjohnh
Posts: 546
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Finally somebody that understands RLS!!

Postby stjohnh » Tue Aug 01, 2017 2:24 pm

Rustsmith wrote:.... I can do almost as well by turning the shower up to as hot as I can stand it and then letting the water hit the base of my skull and the top of my spine. It doesn't work as well, but often it allows me to get to sleep without my legs acting up again.


interesting. I have used that technique for many years when I've had trouble sleeping.
Blessings,
Holland

badnights
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Posts: 4858
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Finally somebody that understands RLS!!

Postby badnights » Thu Aug 03, 2017 5:09 am

Hi dixielee
I love your upbeat attitude. It's wonderful that you can maintain that even though you're sleep-deprived!
... that book is not one I have read yet. Thanks for the suggestion. I have read another one by Buchfuhrer and Hening called Restless legs syndrome coping with your sleepless nights. It was the most helpful so far.
You picked an excellent book to begin with. It was written for patients, whereas the Clinical Management one Betty described, written by some of the same people at the same time, was intended for medical professionals. As patients, we probably find it more useful than the one that was written for us. Especially now that the Clinical Management is in its second edition while the Coping one has become a bit out of date.

Another thing you should read - and print to give your doctors - is the RLS Foundation's 2017 Medical Bulletin (see my signature link for instructions on how to get it - it's under "The RLS Foundation's handouts on Augmentation ")

I take .200 Mirapex and usually 1000mg of calcium carbonate and 220 mg. of magnesium malate about 1 hour before bed.
I agree with Steve, increasing would likely be a big mistake. It might work for a while but if you're augmenting, it will just turn around and bite you, probably sooner rather than later. As for the Ca and Mg, there is no indication that Ca has anything to do with RLS/WED, and only anecdotal evidence that Mg is helpful for some people. If you;re feeling experimental, try leaving them out for a while. If you dont want to mess with something that;s working, then I agree, don;t mess. (This keyboard is driving me nuts, I can't find the apostrophe.)

I would love to hear what is in your "bag of tricks", especially for when your RLS wakes you up in the night.
I do a hot bath sometimes, not when I wake up though. Usually it;s when it's not time for meds yet but the symptoms are bad (but not if they're really bad - come to think of it, they haven't been really bad in a year or more ... wow.. topic for another thread). I stay in a long time and even add hot water as it cools off. I can't let myself cool down. Something that's been happening since the very year this disease flared up is that I get chilled really easily. Deep, bone chilled, the only way to recover is a very hot bath, or many layers of clothes including multiple wool socks, down jacket, scarf and hat. It's really weird.

In the middle of the night, I do lunges or squats, sometimes holding 10# dumbbells in my hands to make my muscles feel it more. Lunges are hard if I'm really sleepy because I tend to lose my balance :) so I'll do squats instead. The key is to figure out how many you need to do (trial and error) then make yourself do all of them; you'll feel like stopping sooner, but you have to really tire out your muscles. I do 30. If I cheat, sometimes I have to get up again, and that bites, even worse than doing 30.

Sometimes I do stuff with my arms too. I have a few injuries, and physio exercises for them, so I do those in the middle of the night if I'm up.

In the evenings I always stand up to read, or sit on a ball if I'm watching netflix. I Think that's why I have trouble keeping weight on - I am always standing. I have a standing desk at work, I have my home office rigged so I can put my keyboard on a shelf with legs and raise every thing up so I can stand or sit.

I am trying not to increase the Mirapex and will research Kratom. I would like to stay away from other drugs if I can, but if they are well recommended I will consider them.
You might change your policy a bit as you read more on this board. A lot of us have found the best control by using low doses of multiple medications. If you're augmenting, you need to get off the Mirapex; you may eventually be able to go back on it if you go on a much reduced dose - which will not be effective on its own. So you might mix it with an anti-convulsant (an alpha-2-delta ligand, in chemical jargon), which by itself also wouldn't work, but together they would complement each other and permit lower doses of both, hence less side effects, and in the case of the Mirapex, less chance for renewed augmentation.

Have you discussed augmentation with your doctor? There are some links in my signature link that you might want to check out...
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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