Hullo... I'm a restless newbie!

[Doxigrafix]

I went up to bed a couple hours ago, but now I'm back up. My &%$# legs started in again with that drive-me-out-of-my-mind electric aching. I tried to go to sleep but there was just no way! It is absolutely horrible! And so I came trudging down once again to avoid disturbing my husband, with my dear little Boyz, my dachshunds, following me like the good friends they are.

Oh, pardon me for not introducing myself. My name is Julie. I am a mean old harridan with RLS. My handle, Doxigrafix, comes from my dogs plus I am a self-taught graphic designer.

I am feeling quite frustrated... like the RLS is one more blasted thing going wrong with this rotten old body! I am currently looking for a job. Only... I am 51 and the job market in this area is very poor, especially if one is over 50 and has no degree. I cannot work in my chosen field (nursing) due to pain from chronic fatigue and fibromyalgia, and now I am finding "sit-down" work intolerable due to the RLS! What does that leave? Minimum wage? I cannot stand for long periods, so that leaves out fast food joints (let me assure you that I do NOT think I am too good to sell burgers!) and I can't lift to stock shelves.

I think RLS needs more attention. Surely some celebrity must have it! May I suggest that RLS have a support ribbon too? It should be the shape of a ribbon, but instead of a ribbon it is two little crossed legs tied in knots. What do you think?

[ViewsAskew]

Julie, I'd start working on that ribbon right away - maybe you can copyright it and sell it to the RLS foundation. Can you put some electrical shocks going through it, too? . I'd wear one. You are right; we need a celebrity. With the high percentage of people with this darn disorder, you'd think that would be easy.

Sorry to hear you're having so much difficulty. CFS, fibro and RLS together is a whammo.

Hope you hang around - we're a pretty good bunch .

Ann

[Sara]

Hi, Julie--

I'm with Ann.... get working on the new "ribbon". I'LL WEAR ONE TOO!!! Sounds like a great design, and who better to bring it to fruition. I think you might be our only resident graphic designer at present.

You're not alone here with RLS of course, but also with fibro and CFS. We have a number of members who also suffer.

Sorry it was such a bad night last night. But glad you found us.

Take care!

Sara

[Rubyslipper]

Love the idea of the ribbon and we would all be ordering them like crazy so I think you should get to work and sell your idea to the RLS Foundation. It have been a wise-cracking thing to say but I think it would work! You have several strikes against you but you have one major thing going for you...a sense of humor. I have fibro and RLS also, the RLS is an old thing I have lived with for a long time but the fibro is new and I am trying to get used to it. I also have several other new health problems to deal with so I know how frustrated it can get. I am 49 and lucky enough to still have a job but there are days when it's really hard to keep going. I'm glad you found us. We're a strong group but it's also a good place to vent because we've all been through it. I like your style, hang in there and keep us posted on those ribbons. You may have been joking, but I think they would sell!!!

[Doxigrafix]

Thank you for the replies! Don't laugh, but I AM working on a design!

I've found three things that I have to hang on to when the depression and feeling like a pain in my own @$$ gets to me... one is my husband, also known as The Sawdust Man, Worker in Wood and Good Guy Extraordinaire, another is humor- albeit a bit sarcastic at times- and the third is my writing. I'm a journal writer.... This year happens to be a special one, both for me and for my writing… I first started writing on January first, 1965, in a little red diary book that my father gave me for Christmas 1964, so this year marks the 40th anniversary of my journal/diary writing. That little tiny book only had like 4 or 5 lines per day, so I couldn't write much, but write I did. I used dated diary books for several years after that, before I discovered the joy of books with blank pages. My journal/diary writing was rather sporadic for a long time after that, and I destroyed several volumes over the years in fits of pissiness, but that little book for sure started something! And over the years, I have become more and more addicted to my writing. Last year, 2004, I wrote a total of *985* pages in my journal! That has got to be some kind of wordiness record, at least for me. I don't know whether to be proud or dismayed about that. I guess I'm a little of both.

My writing helps me cope. It is maddening to be stuck in a body that simply won't do what I want it to do, and often my ranting in my journal helps to save my (miniscule) sanity!

My journal is my friend. My friend who doesn’t judge me or call me nutz, or tell me, “Now, what you need to do is…” My friend who listens and helps me sort things out for myself. I can honestly say that my writing has helped me through many bad times, and many good times as well… especially since I’m the sort who often cannot properly enjoy good times because I’m too busy waiting for the bad times to come back! When I am angry, frustrated, or depressed, I write out all that I am feeling. I highly recommend it. I think it's kept me as close to sane as I can ever be! It's a book full of ME, all my anger, many cuss words and foul descriptive things, and what I would like to do and say to thus-and-so people (such as my former boss who loved to ridicule the way I walked when I was in pain from the fibro and my inability to "sit still"). It is quite a release.

Oh, woops! I forgot things that help #4, #5, and #6. My three rescue dachshunds! Sorry, little furbrats, now leggo my leg!

[Guest]

HI Julie,

I found the southern California site about 3 or 4 years ago. Thanks to the information I received there my problem with restless legs has pretty much been solved( and I was sleep deprived for about 15 years ) . Don't wait another day, the answer in my opinion is Mirapex. For me it was an absolute miracle drug. I take 2.5 mg a day. You must take it before your legs " start " or else it takes several hours to calm them down. I usually take it about 9 PM and I have a good sleep every night. I actually feel like getting up in the morning. Before I felt like crying in the morning because I was so tired. Good luck and stop suffering because there are remedies for this curse.

Pam

[Doxigrafix]

Mirapex, huh? Can you tell me a bit more about it? Is it prescription or OTC? My doctor is loath to try new things or take suggestions from a mere patient... sometimes he will if I persuade him it was really HIS idea all along.

[ViewsAskew]

Hi guys,

Information about drugs including Mirapex is on the So Cal support group site. The following message has the link to it along with lots of other great links.

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549\

If you don't read anything else on this site, please go to the sites in this message (and the link to the message by Lyndarae). I've often printed out information from these links and taken it to my docs.

Ann

[Penguinrocks]

HI all.

Julie, you sound like we have a lot in common. When the anger gets to be too much for me, i start writing as well. another thing that helps me to cope with the depression/stress is painting, drawing or making my nice little party flower pots that i paint and create for special occasions.

I'd wear that pin as well! Have any of you checked out Michael J Fox.org? He does like movement disorders and last time i looked i think RLS was mentioned so in a round a bout way we do have a celebrity????

At any rate, there is much love and support on this site and we are all here for each other.

Loves
Penguin

[legmover]

Hi i know haow you feel i have nights good and bad but more bad then good i am new to this to and am trying to find meds to help. im trying magnisum now it works some but not completelyive tryied clonipine no luck. Its hard when we have to leave bed with are husban so we dont disturbe him or not get so fustrated with it bother you so much you dont wake him or the kids i understand.

[becat]

HI Leg Mover and welcome.
Boy do I know that one about trying not to disturb anyone. I roamed my house for the better part of 8-9 years. It's just like the rest of the world is sleeping and all you want to do is scream. I got to where I hated to travel because I couldn't roam other people's houses and hotel rooms you have no escape.
There is hope. I did finally find a medication combination that worked for me and still does for the most part. Hang in there.
Dox, Mirapex is one of the Parkinson's medications. It is pretty widely used. I was on it for 2-3 yrs., but it's lost it's helpfulliness and I couldn't take the higher doses......I would have been on 2.5 or 3. mg a day, that was too much for me. I do believe that it is helpful to many, some for many years now. I also think it can be a useful tool in diagnosis of RLS as well. It doesn't work for everyone, but you'll find that that is true of many medications. Just a trial and error sort of thing for most. AND I would bet that most that have found something that works, use a combination of medications and non-pharm things for relief.
Penguin, I always wondered if my short fuse had more to do with the lack of sleep than just my control. Now I would admit to having a turbo broom and using it when needed. But when I'm sleep deprived, for long periods of time, or dealing with a heavy pain load.......well lets say that I gun the engine on the broom more often. In the past two weeks, I have shown GREAT control, whereas a year ago, it would have been painful for those that strike a bad tone with me. There is this one doc (lately and not my own doc) that needs to be educated on people skills. I loose one more night of sleep and he might be taught. LOL
Hugs to you all.