Idea for a NightWalkers story spurred by James333

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Brochures about RLS

Postby mackjergens » Thu Jan 03, 2008 6:18 pm

On the web site www.rls.org you will a section that has many different brochures about RLS such as:

RLS & Sleeping

NightWalker (quarterly magazine put out by RLS Foundation)

Living with RLS

Medical Bullentin

Children & RLS

Depression & RLS

Pregnancy & RLS

Surgery & RLS

RLS Scienctific Bullentin

RLS Research grants

Giving Anvenues

Merchandise Brochures ( clothing with RLS designs)

I believe you are able to print each of these from their web site. You might wish to read all that is available to help with your research.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Postby mackjergens » Thu Jan 03, 2008 6:19 pm

Oops forgot to put the link up.

here is where you can find those brochures

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=542

glfngrl
Posts: 29
Joined: Thu Dec 13, 2007 3:50 pm
Location: Thomson, GA

Postby glfngrl » Tue Jan 08, 2008 10:23 pm

Everyone,

Unfortunately in most ways, but luckily in one respect, many members of my family also have RLS (mine is mostly primary, with a bit of secondary thrown in from degenerated spinal discs). Therefore, most of my family deals with it on a daily basis.

I do have another horse of a different color though. When I tried to explain RLS to my SO of ten months, he immediately, without my knowledge, researched it, as well as Requip, on the Internet. I would suggest this approach to everyone involved with an RLSer.....it legitimizes our condition, as well as educates those who are willing to learn.

BUT ~ when I told my bf that I sometimes supplemented the Requip with a small dose of Darvocet, there was some concern. Like many, he had once been closely associated with someone who was addicted to prescription drugs. I think any pamplet or publication for those near and dear to us should include up-to-date information concerning opoids, especially the modern-day thinking of those who are learned concerning pain management. Many people are unaware that as long as these types of drugs are genuinely needed, and closely supervised, they will not become addictive. (I, for one, would like to see controlled clinical trials for the use of opoids in the treatment of RLS - will never happen, though, because they are not profitable to the drug companies!)

Wendi.....good luck with trying to help spread the knowledge about RLS. When more people understand what it is truly like, our suffering will be validated.

Jane
Give up is not in my vocabulary!!

lorabell
Posts: 84
Joined: Sat Jan 12, 2008 4:14 am
Location: NO. IL.
Contact:

Pamplets

Postby lorabell » Thu Feb 07, 2008 5:50 pm

How about one section called " WHY RLS CAN KILL YOU ?
That would get attention. And NO, RLS/PLMD can't kill you,but, driving while sleep deprived can cause accidents. I have awoken on the wrong side of the road more than once.
LISTENING to an uneducated Dr. can do more harm than good. I had a " SLEEP EXPERT " tell me to go to bed at the same time every night, stay in bed, NO MATTER WHAT, get up the next day, drive 30 miles to work, work around machinery all day, drive hone, ( another 30 miles ) and to do this even if i didn't sleep the night b 4 ! I even repeated it back to her so she could ( HEAR ) what she had told me, and yes, that's what she wanted me to do ! I told my hubby she was going to get someone killed giving out sage advice like that. I even went to the head of the Dept. of the hos. and told him. I never saw her again!
RLS /PLMD TAKES YOUR LIFE AWAY FROM YOU. You can't sit still at a movie, cuddle with a spouse, a child, you can't sleep, your tired all the time, cracnky, you don't think straight.

I don't know if this helps, but I had to try.
Lorabell
aka
wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

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cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Postby cmoore1958 » Thu Feb 07, 2008 11:54 pm

I think there needs to be a section about guilt -- of both the person with rls and of the family of that person.

In a prior post I discussed my marriage and our coping with the many things wrong with me. Here's a part of that post. (I don't know how to do that little box thing yet. :) )

Last night I shared with Rich my experiences and things I learned from this board -- mostly by reading and understanding. In particular we discussed the partners who don't "get it" and my disbelief in why they would not "get it" 'cause he does. He was very concerned about this topic and how I felt. Bottom line is that he said when we're just at home hanging out he can tell when I'm in pain or uncomfortable. He sees that I don't sit still very much and that I read a lot. He has figured out that my reading occupies my mind and my rls stays at bay that way. But he also admitted that when we are busy running errands or walking somewhere or just doing stuff together that he doesn't forget about my health problems, he just doesn't think of them at that moment. Rich said he feels like a heel when I have to remind him by a subtle "honey, I can't walk that fast today". I let himi know that my reason for saying that is so he will know where I'm at physically and not to chastise him for walking ahead of me. Then he said something that made me wake up quick (again) . . . he told me that when I have to remind him he feels like he's let me down and he's concerned that I don't think he cares about what I'm going through. I did let him know immediately that I love him unconditionally and I know he loves me that way as well. I don't want him ever to feel he is letting me down because that is not what this is about. He does so much for me daily and his support is awesome. I reassured him as best I could and will watch his actions to make sure it was enough.

I belive it is very important that our partners know we love them and want to know what is going on with them too. It's not just about us. And that they should not feel guilty or uneasy if they don't "think" of us at what they feel is the right time. They just need to know that we love them unconditionally, and that we know they return that love to us.

My other point is that each relationship must have communication, communication, communication. Those of us with rls cannot assume that everyone around us knows we are having a bad day, or that we want something for relief, or that we're depressed, or that we just want to cry. Yes, our partners can look at us and watch us and know when we are a little "off" and put two and two together. But, unless we include them in our little episode how are they going to know what we're talking about?

I also agree with prior posts discussing the need to show the public what the true rls sufferers are like -- from one extreme to the other and everything in between. Something that shows the limits a person with rls can have. That it is sometimes a very real disability. Just because they can't see it doesn't mean it is not there, etc.

Okay, that's my 12 cents worth. Put it on my tab. :lol:

I do believe in this project! Good luck!

Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

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cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Postby cmoore1958 » Fri Feb 08, 2008 12:26 am

Two more things, quickly . . .

1. I agree that the name "rls" needs to be changed to reflect what we have not how it starts. This includes the arms as well as the legs and other parts of the body for some others, too. They are not just restless limbs, etc., they hurt.

2. I believe it is important that our families have somewhere to go that is equivalent to the rls board for us. We know what sharing and listening to others in our situation does for us . . . why should our families have any less.

Cyndi
Even when we are by ourselves, we are never truly alone.



My motto: It's MY pitty-party and I'll vent if I want to.


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