time for venting

[badnights]

Gill: Sorry so long to reply. I am not on Mirapex anymore; I was up to .25 which didn't really work plus it turned me into a zombie - who needs to be tired all day from a drug you're taking to keep from being tired all day? Now I'm on 9-12 mg hydromorph contin (an extended release version of hydromorphone). It works much better than the dopamine agonists or gabapentin.

Sleep is such an issue, tho! I can actually fall asleep OK now that I have the CPAP machine and I'm using brainwave entrainment CD or software; but I wake up every hour. Now, also since the brainwave entrainment, I find I can fall back asleep easily. As the night goes on, I wake less; there comes a time around 4 or 5 in the morning when, if I am allowed to sleep in, I will get 6 hours of sleep. Maybe. But I don't let myself do that, because I am finally getting enough sleep to survive and I don't want my schedule to get completely out of whack again.

I think the insomnia is totally a part of the RLS, a hyper-alerting component that is not treated with the meds currently used, and is not recognized as part of RLS - it is brushed off as learned bad habits.

such battles we have. oh for sleep!

[doety]

I was thinking that REAL druggies would laugh at all of us -- we try to be so careful we don't go over the prescribed amount, don't let the doc know we took an extra pill, don't order anything too soon, etc. etc.

I have a stash of Methadone from a time when two docs were prescribing it for two different things. Of course I guard it with my life. And I'd like to think I'm being careful.

I've had days and days of feeling like my feet were on fire (that's what my yoga teacher calls it -- that's how he sees it in me) and it felt like it wouldn't stop last night. I'm supposed to be using the CPAP with a line from an oxygen concentrator -- nobody has said: and if you don't, you'll keel over and die. But damn, it's really hard when you wake up so often and rip the mask off.

Last night, I put my head down without thinking and was asleep quickly, without it. Woke up in 2 hours (of course), put it on, asleep, woke up, RLS. Got in the bathtub, went to sleep and woke up in some God-awful position and a crick in my neck. Back in bed, finally put the machine back on. When I woke up at 5, took it off, took a 10-mg. Methadone and then proceeded to sleep until 10. I don't know what I would do without that occasional block of sleep. I just know that right now my feet are not on fire. I don't feel like there's someone inside me trying to break out. I'm calm and can write.

We keep repeating what the docs say -- that this S***T is treatable. But, really?? I always wonder how it would be without any medication. I don't know, because I'm either on it or coming off it, neither of which is a normal physical situation. I'm not sure it could be worse.

[Polar Bear]

Doety, you made me laugh out loud.

I can just visualise it - all of us seemingly respectable rls sufferers of varying ages and backgrounds, appearing 'normal' to the public - but behind it all..... we have.... yes..... the secret stash !! And probably feeling guilty

I reckon most of us have a little 'emergency stash' that we look after very carefully, it's really just our comfort blanket, like a kiddie would have.

[ViewsAskew]

I can see a new drama on TNT....

Instead of the high school teacher selling meth, a moderator of a forum for a chronic illness, decides to start supplying the members with drugs that really do work.

[Polar Bear]

Yeeeeeaaaaaahhhhhhhh..... what a good 'un.

Even at present when DH and myself get our medications spread out onto the table to prepare our little weekly med boxes DH reckons anyone looking in would think we were cutting/slicing/dealing, what with using our pill cutter etc.

Hey...A BrainWave.' we could have a compulsory 'slush fund' to be used to pay any fines incurred by the De...r.... oh sorry.... Moderator.

And then cos we all felt so much better, we could be out there spreading the RLS word ... squashing the myths ..... giving mini talks to staff in medical practices and places of work, where anyone will listen. The list goes on --- the world is our oyster - calling us to arms (That would be RLS arms and legs ??)

Oh, I'm forgetting...... everyone would wonder how we 'recovered'. The poor Supplier.... oops... Moderator would be looking over his/her shoulder awaiting the big hand on the shoulder saying 'Got Ya!!! '

But we would be loyal RLSers - standing proudly and loyally with our 'Special' Moderator.

Then we'd protest, with banners.... sit in the street and block the front of the Courthouse..... they could make a movie......

George Clooney could play our medical advisor...... with of course a love interest ....

And the outcome would be an entirely new attitude to us RLSers, opiods etc provided and monitered ..... free of charge.......

Hmmmm..... got carried away there..... but it sounded fun.

[Betty/WV]

Great posts this morning. Very funny. We RLSers need laughs, sometimes everything seems so negative when you haven't slept for nights on end.

By the way, I have a very small stash of 8 vicodin. Sometimes I have breakthoughs (with the Mirapex) and I talked my neuro into giving me some vicodin, for those times. He doesn't like to give narcotics. But he did give me 15, WOW. He has to know that I don't abuse it. I just wish he could experience what a night of severe RLS is like. He would be taking vicodin or whatever.

Take care all. And thanks for the moments of laughter.

BETTY/WV

[doety]

POLAR BEAR YOU ARE A RIOT.
Now I've got something for you to do when you're up at night and a little bored:
tune in, watch it all the way through, learn it, do it

http://www.oprah.com/entertainment/Opra ... -Mob-Dance

[Polar Bear]

Thanks Doety, I haven't yet looked at the link, but I will.

Don't think I could be the George Clooney (he's gorgeous) love interest anyway.... apart from age.... cos 6 weeks of steroids has added 9 lbs weight around the middle. Could never breathe in and hold all the bits in long enough.

At the point now of hunting through drawers and finding my old 'all in one'.... it won't make the fat disappear but it kinda stops it jiggling so much.

[Polar Bear]

Doety, the link is class... awesome.

I want to learn it.

It could be our version of the dance moves, the Bowls Awards Dinner wouldn't know what hit it.

Thank you. It made the hair stand on the back of my neck..

[waterloo2]

hi all
geez what have I started..........lol
hey maytbe we coud all start a dance routine with rls.
gill

[Polar Bear]

Well.... with all that movement we wouldn't feel the rls twitches.

[doety]

Before I saw this, one of my remedies when I wake up with RLS is to put on a disc like Michael Jackson or somebody singing fast and just dance. I love to dance and it nearly always makes it go away.

Yes I can see it now. At the next National Convention of Night Walkers (there is one, right?) we get the masses of movers and shakers and teach everyone this dance. That way, we can be coordinated. You're surely heard that thing about how a butterfly's wing flaps in Africa starting a hurricane in the U.S.?? Well -- imagine what we could all do with our excess energy if we all got going the same way.

[ViewsAskew]

We could have a little signal/email that goes out to everyone on the board and we could all break into dance simultaneously, no matter where we were....too funny.

[Polar Bear]

Ann's comment about the signal triggered a thought..... no idea where this has come from.

But you know how there is the red ribbon badge for Aids, the pink ribbon badge for breast cancer (we also have a little pink diamante duck over here), I wonder could there be a badge and /or ribbon or something for rls. Something that might encourage people to ask questions.

It would hardly be a badge that other sufferers would generally recognise considering that
1. Some folk (obviously non sufferers) consider it is a non existent condition.
2. One of the docs in my practice thought ropinerole/requip was a drug for arthritis ??!!
3. Here in N.I. for example, there is no support group, no information, no RLS expert and I am teaching my main doc/GP. ******* (see below)
4. Those who may have heard of it think it is no big deal
5. It is not life threatening...... apart from jumping off a cliff.....
etc. etc. etc.

***** Another doc in the practice who is treating me for a different rather serious condition obviously thinks I'm a pain in the a.s when I say I prefer not to take antihistimines/amnitryptiline/ blah blah blah. When I showed him the Medical Alert Card he said (in the nicest possible fashion) that he found it very alarmist !! I told him that was only because he wasn't suffering the symptoms. He suggested that I drop the Requip and perhaps I could then get better sleep !!!!

Oh dear.... I'm getting long winded again ... they say these steroids make you hyper and energised, guess it might be true.

Anyway..... maybe some sort of a little identification pin.... just an idea.

[Betty/WV]

Polar Bear: I love the idea of an identification badge for RLS. Get the ball rolling and see what we come up with. Maybe a pin shaped like a leg! !!!!!!!!!!!!

BETTY/WV