What would you want in a book about RLS?

jan3213 · Post by **jan3213** » Thu May 19, 2005 2:10 am

Yes, Ann, including having your liver enzymes checked. Once again, I've never had my checked, until the big "blood letting" a week ago Monday. That's something that should be evidently be done periodically, as well.

Jan

cornelia · Post by **cornelia** » Sun May 22, 2005 6:08 pm

Maybe the doctor should write something about suicidal thoughts. Several people on this forum mentioned them. Not a nice subject, but it can be a part of RLS for some people, me having been one of them at times in the past.

He may also write about getting disability.

Corrie

Post by **ViewsAskew** » Fri May 27, 2005 4:57 am

Thank you all for sharing your ideas. I've sent the final email to the doctor with your ideas. He was truly grateful to have received all of them from; he said it really helped him see RLS from our persective, something he would have missed if you all hadn't provided so many insights. He is in the final stages of writing, so hopefully we will see something soon.

cornelia · Post by **cornelia** » Fri May 27, 2005 5:29 am

Thanks, Ann, I'm looking forward to this book.
Corrie

Athena · Post by **Athena** » Wed Jun 01, 2005 6:05 pm

How about a complete list of side effects of these medications?
Here is my cousins story:
He took Sinemet x 10 years. Developed total body fatigue and difficulty breathing. HE was unable to work or lead a normal life. Afer many years and many doctors he was diagnosed with mitochondrial disease. There is no one diagnostic test. Only many levels of tests. He passed all the tests over 3 years. Then went in for the FINAL test which would show which DNA mutation he had. Turned out he did not have any DNA mutations, and no mitochondrial disease!
It was the Sinemet he takes for RLS.
Athena

squirmy · Post by **squirmy** » Fri Jun 03, 2005 1:35 pm

Possible chapter headings: What is RLS?;History of RLS;Who gets RLS;What causes RLS?;diagnosis process for RLS;treatment for RLS;How can the body be affected by RLS?How can quality of life be affected by RLS?The progression of RLS?The prognosis for RLS;Current research for RLS;RLS and disability benefits;pregnancy and RLS;illness with RLS;drugs to avoid w/RLS;

Tina

Kris · Post by **Kris** » Sat Jun 04, 2005 1:49 am

It would be nice if someone could address the pain that I feel quite often. I wake up at night just crying and I am so exhausted and I get so ill. I can't work a regular job. I can't WALK sometimes my legs are so bad. (I also have tarsal tunnel in both feet.) I want to crawl the walls and sometimes just wish they'd amputate my legs and get them off my body. When I go to the RLS sites, I don't see any real mention of pain.

I know that my neurologist says there is a range for this, and sometimes its just jerky legs, but he says mine is severe and that there is a lot of pain that goes with it. Also I have it in my left forearm and I just want to rub it all the time and shake it out.

I think most people think restless legs and they just think like restless hands - but in my case, its like having broken legs and ankles. I know the ankles are the tarsal tunnel, but my legs hurt the same way.

Kris · Post by **Kris** » Sat Jun 04, 2005 1:51 am

An explanation of disability benefits would be nice. I know I can't work - have had trouble for 8 years but in November it got so bad I just could not do it anymore. I live on my leg's schedule, not an employers. I have thought about filing for my disability, but I am afraid that if they see restless leg syndrome they will laugh, because as a name it sounds silly, not disabling!

Post by **ViewsAskew** » Sun Jun 26, 2005 6:48 am

One of the things the doctor wants to put in is a comprehensive list or resources. This includes web addresses of message boards like this one. The doctor emailed me today and asked for the ones I know about, but I only know of a few: this one, two Yahoo groups, a very small group on Talk about Sleep, and a We Move group. Does anyone else know of other boards? If you do, please post here or email me. Having a complete resource would be such a great thing for all of us.

Oh, as an update, the book is supposed to be to the publisher by the end of September! I don't know how long they have it before it gets published, but I would hope we would see it by early next year.

Ann

Kris · Post by **Kris** » Tue Jun 28, 2005 12:57 am

There is a HEALTH board someplace. I found it with an internet search and there was a whole thread on RLS. Some poor lady was having a lot of pain and no one had answered her with a firm, YES, RLS can cause a lot of pain.

It would be nice if there was something in there for sufferers trying to attend classes or go to school. Maybe a suggested list of accommodations for people that they can take to their disability support office, and information to help them make sure that they chose a college that has good disability support.

Post by **ViewsAskew** » Tue Feb 07, 2006 4:11 am

Just wanted to give everyone an update. The book is at the publishers and the doctors really listened to everyone. They added topics based on your input, and added more info, too. It is at the publisher now. I actually didn't know everyone involved, but as I understand it, the two primary authors are Dr Buchfurer and Dr Hening.

So, I'm asking for your help one more time. The publisher wants a catchy subtitle. Sleep Thief is great, but it's already taken. So, does anyone have any ideas? What would a good subtitle be for this? Oops, I just realized I don't even know the title! I'll ask and let everyone know. I'll also see if I can determine a publishing date.

Ann

becat · Post by **becat** » Tue Feb 07, 2006 4:21 am

Simple................
RLS IS NOT JUST A WHOLE BODY DISORDER, BUT A LIFE CHANGER.

RLS IS IN YOUR HEAD, YOUR ARMS, YOUR LEGS, YOUR LIFE.

READ THIS BOOK BEFORE YOU CUT OFF YOUR LEGS.

REALLY! GET BACK TO BED WITH A GOOD BOOK. ( I HAD TO GIGGLE)

TAKE A BITE OUT OF CRIME! STOP THE MADDNESS AND GET SOME SLEEP.

RELAX IT'S ALL IN YOUR HEAD FOR A REAL REASON.

Post by **ViewsAskew** » Tue Feb 07, 2006 4:32 am

Thanks for the giggle. Not sure which one I liked best! I'll be looking forward to many more creative ideas. If others add to your wonderful ones, I don't know how they will choose!

Oh, how about:

Wait! Don't cut them off, you'd still feel it anyway!

becat · Post by **becat** » Tue Feb 07, 2006 4:35 am

Nope that is not PC, they would be sure to get letters and lawsuits for that one.

Post by **ViewsAskew** » Tue Feb 07, 2006 5:55 am

OK, more info. It will be sold through Amazon, the RLS Foundation, and likely other places such as through its sponsor, the American Academy of Neurology. It actually has some info that is specific to Europe.

The title is quite catchy. . . . Restless Legs Syndrome :shock:

So, we really need a subtitle here! All suggestions welcomed. Maybe we could get someone to donate a book to the person whose idea is chosen.

Ann

Restless Legs Syndrome (RLS) Discussion Board

What would you want in a book about RLS?

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Book needs a subtitle