Starting Over Again

[ViewsAskew]

Ruby, stopping Mirapex (for some people, especially if you have been taking it for awhile) WILL cause an extreme escalation of symptoms for 3-7 days. I mean extreme. If you were taking .5 mg of Mirapex, according to Dr B and other doctors that advocate drug holidays, you should start Requip at 1 MG your first night. If you try to titrate it while reducing Mirapex, I guarantee trouble (again, if you've been taking it for awhile. Corrie went through a similar thing. I tried to stop 3 times before I made it. By the fourth or fifth day, I thought I was dying - I'd had no sleep! When I did it the last time, taking methadone was the only way I got through it. It allowed me some rest. By the 7th or 8th day, I was much, better and by the 10th day, my RLS was back to normal.

If you can tolerate the withdrawal, go for it, but I don't think you have to feel so bad. Email me privately if you want more info. Oh, I I don't have your email to send you any pictures of my art!

Ann

[sardsy75]

Hey Ruby

If my foggy memory serves me correctly, you were one of the first people I got to know in this here forum.

I know we've kinda (well, kinda ain't really the right word there, but anyway...) lost touch along the way, but you should always know that whatever you are going through, no matter how bad or sad ... there's someone on the upside-down end of this crazy RLS world thinking of you (and everyone else) and wishing she could give you great big (((HUGS))) of comfort.

I'd literally give anything to be in Orlando with you guys next week, but travel miracles just dont seem to happen these days.

Sorry Ruby, got a little sidetracked there. What I want to do is to share the words of a song with you that i heard one day recently when I was on the downward spiral that we all know so well:

Maybe we're different, but we're still the same
We all gott the blood of Eden
Running through our veins
I know sometimes its hard for you to see
You're caught between just who you are and who you want to be
If you feel alone and lost and need a friend
Remember every new beginning, is some beginnings end.

Welcome to wherever you are
This is your life, you've made it this far
Welcome, you gotta believe
That right here right now
You're exactly where you're supposed to be
Welcome, to wherever you are

When everybody's in, and you're left out
And you feel you're drowining
In a shadow of a doubt
Everyones a miracle in their own way
Just listen to yourself, not what other people say
When it seems you're lost alone and feeling down
Remember everybody's different
Just take a look around

Welcome to wherever you are
This is your life, you've made it this far
Welcome, you gotta believe
That right here right now
You're exactly where you're supposed to be

Be who you want to, be who you are
Everyones a hero, everyones a star

When you want to give up and your hearts about to break
Remember that you're perfect
God makes no mistakes

Welcome to wherever you are
This is your life you made it this far
Welcome, you gotta believe
That right here right now
You're exactly where you're supposed to be
Welcome to wherever you are.

Bon Jovi - "Welcome To Wherever You Are" - Album: Have A Nice Day

The only thing I can sympathise with you on these days dearest Ruby is the RLS ... it is others in this group who are able to offer the support you need with regards to PLMD, Fibro & Sleep Apnoea.

Just remember, you're lil Aussie Mate is thinking of you, praying for you and hoping that your down days don't last for too much longer as she knows what it's like.

Sending you BIG "upsidedown" (((((HUGGLES)))))
Take care of you girl!!!

[Rubyslipper]

My dearest Nadia, you don't know how I have missed you!!! I was SO disappointed that you couldn't make it to Orlando. But I have always known I had a friend "down-under" and you truly made my day today. I will print this out and keep it with me along with the other wonderful things my friends have said to lift my spirits. Thank you for your loving thoughts and know that I never forget you, and you will always have a "home" in the US if you ever need one. Thank you, hugs and kisses to you and a long boooo to the travel demons who kept you away from us THIS year. Ruby

[ksxroads]

Starting over ... seems to be appropriate for my post.

Have been reading various threads but not posting much lately as the brain fog and discomfort levels are just too high... thinking is disorientated a lot of the time... go figure! Yes I can relate to those dark days, and truly am seeking that poppy field!

Had appt with Rheumatologist on Monday, they diagnosed fibro. After some discussion, probably related to RLS and PMLD. Given the problems I had with Requip he didn't want to prescribe Mirapex. He prescribed Gabitril. Appt at 2 got out of there at 5, a blank eyed zombie...

Of course as you all can relate, the hours spent driving, the spoons I expended *Big Grin* and changing weather fronts - had rough few days with flare up last night. I haven't started the Gabitril, as honestly I have felt to badly I didn't want to try a new med and feel worse. Does that make sense?

Have appt with Neurologist on Dec 2. Had scheduled appt for the 28th in Wichita, but he will be at the sleep center on the 2nd only 40 miles from here, and opted for the less driving time. The Rheumy was supportive and interested in working with me and the neuro to find some relief. I am more disappointed in myself as I didn't stress pain management in our conversation. I think it is primarily as I have this mindset that people think what do you mean you have something you can not diagnosis, you don't know the cause. Then someone the other day said RLS you sure hear a lot about it these days, something new they can tell people they have. Dealing with this is so emotionally and physically draining, you just want to be a turtle and crawl in your shell.

Will suffers from gout, so ibprofen is one medication that he can use. I have been taking 800mg of ibprofen every three to four hours the last few days. Unfortunately, last night that didn't dull the pain ... I felt much like Jan and wanted to cry out in desperation to the care givers ...

Yes those downward spirals we all know so well. Have to *interview* a general practicioner... yet I just don't seem to have the energy to go forward ... nor the leave...

During these frustrating times, it helps to know I am not alone in this journey. It helps tremendously to read of the successes of others. Tonight I'll try the Gabitril, and while it is not really for RLS it is said to help fibro pain by inducing stage 4 sleep... we shall see how it goes!

********Positive Energy to all regardless of where we are or where we are headed***************

Love and healing light, Hazel

[ksxroads]

Okay, here is some reasons I lack faith in the medical system...

1. The sample packet the Rheumy gave me expired 5/05, oh well I believe that is a best used by scenerio? *BG* but the effectiveness of the drug probably is not deminished at this point.

2. The FDA has issued a warning and the makers of Gabitril stress this medication should NOT be used for treating any illness other than eplipsey due to high incidence of siezures in treating people without siezures... ie using it for panic attacks, etc.

#1 I was aware of, that the sample was expired.

#2 was brought to my attention today when a friend called to see how it was going.

I took 2mg last night, was sleepy regardless probably due to the fact of three nights of fitfull sleep, slept without dreaming, the out like a light scenerio, then at 3AM like a bolt of lightening striking I am awake and highly aggitated.

Since it IS NOT a drug recommended by Mayo I choose not to take it.

Have appt with a GP tomorrow, will discuss this with him.

and the saga continues!

Howling at the Moon!

Love Hazel

[Guest]

Maybe I just need to have my nose hairs trimmed.... What do you think Randy?

Don't know how I missed this, but Hang In There Ruby! The Nose Hair Trimmer is on the WAY!

Darn it anyway. It just sucks to know that you're in a bad way right now.
Wish you all the best.
My Mom read me a quote out of the Book of Psalms one time when I was sick, I don't remember it word for word but it was something about...Trouble may be going on all night, but there's joy coming in the morning. So I hope Morning comes quick, or even that the sun has already come up Ruby!

[Walking After Midnight]

Oops.
Well I forgot to Log In on that last Post.
It's just another item to add to the list of things I can't do anything about.

The List
1. Old
2. Can't See
3. What? Can't Hear
4. My clothes must be shrinking
5. More hair in new places, less hair where I need it.
6. Hate all "New" music.
7. Gassy
8. Everybody's wrong, I'm always right
9. I have to pee again.
10. Probably have something hanging from my nose
11. Wait...I'll finish this after Columbo.
and...
12. Can't remember anything.

And I'm only 46.
I just feel sorry for my wife.

RUBY!...The Best To You.

[ViewsAskew]

Ruby, know that you are home, I can't wait to hear how the CPAP machine is working. I have high hopes for it.

Hazel. Smart woman. Good you read that info and were able to hear your friend. Let us know what the GP says.

Ann

[Rubyslipper]

I am so grateful for friends who care and can make me laugh! Hazel, I do hope you are doing better, I thought of you often and of how much you would have gotten out of the conference. Randy, thanks for the reminder that a new day brings new hope. I am SOOO with you on the aging thing too! Haven't received the nose hair trimmers but maybe if they don't get here, I can make it without them! Ann, it was great seeing you again, just wasn't long enough. The machine has been use the past two nights and is tolerable except that it gets uncomfortable on my face around 3:00 am so I have taken it off each time. I guess I need to see about getting it adjusted because it does hurt a little. Otherwise, the breathing part is okay but so far it is too early to tell if it is helping or not. I will keep you posted. Ruby

[Guest]

((((BIG HUG))))) Sent many positive thoughts to you all on these brisk winds and am glad to find you back from the conference safe and sound. Thought of you all often, eagerly knowing that we all will benefit from what you learn and bring to this message forum!

GP visit was fair. Initial orientation was with the nurse, gave her info on medical history and rls . org info on meds which increase RLS and the Mayo med protocal recommendation page.

My blood pressure was 198/100. Nurse asked if I had normally high bp, which I don't, but said I was in pain so that probably could be the reason.

Dr had a male nurse practicioner shadowing him, I do not know if he went over my chart prior with the NP but he didn't really address much other than what I brought up ... He looked at my mouth, said I had a low palate which he told the nurse practicioner is indicitive of sleep apnea... asked if I had ever been tested for Lupus which I havent, as he wasn't all that certain of the Rheumy's fibro diagnosis...

He also thought it best if I quit the Lorazepam. I had cut myself back to make my script last till his visit to 1 or 2 a day. So he did not refill that script.

He wanted to confer with the Neuro as to what sleep study tests he thought necessary. I did mention that I would appreciate something short term, but he wasn't all that eager about prescribing opiods... since I said I want to go slow he gave me a script for .125mg of Mirapex.

Friday night was tolerable, saturday somewhat agitated. Sunday I didn't feel too well, RLS pain, and in another thread I listed I also had severe burning of soles of feet and palms of hands. Not sleeping well since sunday, took Monday and Tuesday off as mentally and physically I needed to vegitate and go at my pace not the worlds. Luckily I can do that from time to time... how long that will be I don't know!

Contribute some problems to the drastic change of weather and possibly Lorezapam withdrawal...

Have appt with Neuro on the 2nd. Just Breathe... is my current motto! Though the rowing does help me to be more forward thinking...

Hope that the cpac machine provides some relief Ruby. Who knows trimming those nose hairs might do the trick! *Big Grin* If we could be so lucky! hahahaha Ann you husband uses one right? I seem to recall that he tried a couple masks prior to finding one that worked well for him.

Thought of you all often, Ann, Rubyslipper, Nadia, Randy, Jan and Becat... knowing that we all are rowing towards the same goal. Love Hazel

[ksxroads]

Guess I should log in!

One more note... mentioned to GP that gyno had tested and said my iron levels were fine, could he tell me my ferritin level... as RLS levels may be helped if they are atleast 50 or higher... he said my test didn't indicate ferritin levels and he was uncertain how he could ask to get my ferritin levels checked and have the insurance pay for it ... duh... that left me somewhat confused... I guess if you are of menopausal age you are limited to certain tests??? Hazey in Ks *BIG GRIN*

[Rubyslipper]

Hazel, I just hate it that you are going through all this. If I understood you correctly, the student doctor was the one who made some decisions? Even if not, you need to put your foot down and let them know that "experts" or not, you know your body better than they do and that you need meds for pain and sleep. Not later, NOW!!! As for whether or not your insurance will pay for having your ferritin levels checked, call them and find out. It really ticks me off when you explain to your doctor what you need and they test you for regular iron levels that do no good for the RLS. I can be the Wicked Witch of the West when I need to be and if I need to send those flying monkeys to knock some sense into those doctors, just let me know. Hazel, inform yourself and take charge. You are such a sweet caring person and I don't want to see you suffer for no reason other than doctors ignorance. Hang in there, push your doctor or the monkeys are on their way!

[ksxroads]

(((BIG HUG))))

Those monkeys scared the heck out of me when first seeing them! Those Drs best watch out!

No the Student Nurse just listened to the Dr, which light bulb went off why don't drs voice such explainations to the patient? *Big Grin* There is a time saving factor for the physician, the drs nurse takes history info, then dr reviews notes, yet sometimes I think a lot is lost by the dr not doing this interview.

Even though Isa tired ole woman, Ima not ready to give up the fight. Thank you for the encouragement and insights...they help me to keep focused. Got 5 hours and 19 minutes of sleep last night! Yea! While I am not all that satisfied at the moment with drs, it seems that my biggest hope is being placed in the neuro... and that he is familiar with RLS and has a progressive treatment protocol. Believe me I am printing out snipets of info from the conference postings to further educate myself -

How goes the cpac?

Want to say thanks to all who contribute to RLS and share information. In another thread the need for funding was stressed. Sometimes that aspect is lost in this desperate search to find relief. I am sending my $25 in to join the organization and urge others to send what they can.

Love and healing light, Hazel

[Rubyslipper]

Okay, so the monkeys can stay caged. Just keep yourself informed and stand firm. We need you here. I REALLY appreciate your support on joining the foundation. I just can't stress enough how important it is. If you use this website, it's worth something, even $5 if that's all you have in order to keep it going. The CPAP is going, I'm getting used to it but can't really tell any difference yet. Hang in there Hazel, it will get better!

[ViewsAskew]

Ruby, hang in there with the CPAP. If the mask is bothering you at 3 AM, you may need another mask.

Ann