Honestly...

[The Artist in the Mirror]

... this is the most frustrating disorder. It effects so many things I do and so many meds I take ...or can't take.

Made a few changes lately that are helping - 1. I have taken out alot of processed food in my diet. It's helped before and looks like it's helping again... 2. I also switched from sweet and low to splenda but cut it way back... 3. Cut the coffee down.... 4. I'm taking percocet a few nights so I can back off the requip and have a drug holiday... 5. The second I feel ANYTHING going on with my legs I get out of bed and do 5 minutes of brisk walking in place.

All of these things have helped in the past when my usual routine is doing nothing and the leg thing is out of control - not to mention the arm thing and general body thing.

But to be honest, I'm just tired. Flat out, plain tired. I've had a few months of really really bad sleep - when I'm getting it. Every night and the worst thing is I'm so tired I'm napping again ...and the rls is so bad I'm having it in naps too. Its effecting my mood and my outlook at this point.

It's hard not to be grouchy

[SquirmingSusan]

Hi Artist. I sure do understand what you're saying about being tired, and how hard it is not to be grouchy. I'm sure every one of us here understands. And yes, it is a frustrating disorder. I know for myself, every time I think I'm getting it under control, something changes. A medication stops working, or I get augmentation or leg pain from Mirapex, or my sleeping pills only work one night in 3... It feels like I'm always chasing a moving target. And the doctors want to just give you one medication and have it all get better.

But eventually most people do get some degree of relief. It takes a lot of trial and error and a doctor who is willing to do what it takes. Good for you for taking charge of what you can - watching what you eat and drink, and getting up and moving when you need to. I hope you find some relief soon!

BTW, I love your blog and your artwork. I went there and was totally captivated. You're very gifted.

[The Artist in the Mirror]

thanks susan... I KNEW people here would understand - I needed a place to vent, really.

The truth is I have a great doctor - I see a sleep doc who I knew from when I was a polysomnographic tech... I used to do ...uh....sleep studies... lol. Weird, huh?

I started seeing this doc because have asthma and I needed a pulmonologist....and this doc was a pulmonologist as well as board cert. in sleep med. In the back of my mind I knew rls would come up and I was finally willing to give up that I could go on with just sleeping pills anymore... I wasnt willing to take any of the prior rls meds - but very much wanted to try requip.

- I'd seen how this doc was with sleep medicine. How he looked things up, called places even, if he had too... tried different things - and never ever didnt take patients seriously. When he said - have you ever thought of taking requip? My answer was something along the lines of "everynight..."

Anyway - unfortunately dealing with rls always a work in progress. But I just make a change here and there when I have to because I don't have any choice. Im not on very much requip (1.5) mg and am trying to keep it that way - the less I take the less arm and body involvement I have. I'm willing to put up with a certian amount of movement and some disturbance in sleep to keep from going on a higher dose. If I have to I have to but taking a drug holiday 6 months ago allowed me to stay here so Im hoping it will again...

thank you so much for what you said about my artwork - and thanks so much for looking ! wow! I love doing it so much, its been very meaningful for me...

[ViewsAskew]

This is one of the oddest disorders, isn't it? And, like Susan, I totally understand the being tired thing. Not just tired in the sense of I haven't slept, but the mind numbing tired of having it constantly be there and every time you think you've got it under control, having it come back and laugh at you.

I have no idea if this applies to anyone else, but there was a time when a lot of things worked for me...exercise level, what I ate, etc. And one day, none of that worked anymore. I had daily RLS, all day, everyday. It didn't matter if I drank...or not. If I exercised...or not. Mostly, anymore, it's just there and I take meds to keep it in check and what I do outside of that just doesn't have any effect. In a way, it's nice. I don't have to always be wondering if what I'm doing will make it worse. It's worse anyway, lol.

[sardsy75]

Hey Artist

Yes, RLS is the most irritating, frustrating, complicated, disgusting, tormenting, torturous thing when it is at it's worst and defeating you in your every effort to get not just sleep, but rest from the pure exhaustion you are suffering from the sleep deprivation.

You are more than welcome to vent, scream, cry, shout, say one word, do whatever you like (within reason lol) around here, and know that everyone will understand you and NOT judge you.

This board has been a literal lifeline for me a number of times. There are so many wonderful people here who can help you in many different ways. Do not be afraid to ask what might seem the most stupid of questions, as around here, there is no such thing as a stupid question.

As Susan said, this RLS trip that we're on is a case of individual trial and error. No two people are alike, which is what makes this "thing" so unique.

Sending you positive thoughts and hugs from afar and hope you are able to find the much needed rest and sleep that you need in the very near future. Your body can only take so much before it will scream at you to stop!

Take care of you, and keep us posted on how you are doing.

(((((HUGS)))))

[The Artist in the Mirror]

Thanks everyone... I know its frustrating for everyone ... its all so elusive. what works, what doesnt...what worked last tuesday never to work again.

and yes, Im afraid I will get to the point that nothing will work. Ive had this since i was a kid and slowly its gone from rarely, to sometimes, to a few months on to a few months off.... to every night but some nights worse than others....

I do fear it will go to every night and every day. And than every night and every day at an intolerable level.

But I cant go there. I worried alot about the progression of it for a long time and than lo and behold requip was born... and Im better than I was... so Im hoping that as I get worse the meds get better.

thats what Im figuring anyway

[sardsy75]

I sense a lot of stress and anxiety in you.

This is not good for you ... or your RLS ... it is one of our main triggers and exacerbaters.

Dont think about what's been tried and failed; it just brings you down. Try to stop focusing on where this unknown adventure is going to lead you and bring yourself back to the here and now. It's where your body needs your head to be. This journey we're all on is one big science experiment that can only be done day by day and forecasting is pretty much out of the question.

When I was struggling through some rather viscious times a few years ago, my mantra was: one step at a time, one day at a time, and most importantly, stay positive! When I was having a particularly bad day I would remember some advice that a friend gave to me to help me sort out my mind: Go and sit in your favourite place (be it under a tree, in a hammock, in the garden, on your bed), calm your breathing, close your eyes and picture yourself sitting under a huge apple tree ... and think about oranges.

Yes, it is more than likely that the drugs and treatment programs will improve ... in the future ... but unfortunately, we're here in the now.

Yeah, i'm one of the kooky members who hangs around here. I've been to the bottom of the abyss and back a number of times and it has been with the help of the wonderful friends I have here on this board that I am still motoring along on the right side of the grass.

((((Hugs)))) and Positive Thoughts are being sent to you via the moon ...