RLS LIFE: Drugs, Side Effects & Everything Else

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
Moderator
Posts: 14588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Postby ViewsAskew » Sun Mar 22, 2009 4:05 am

I hope she gets better soon. It's very hard to watch your child when he or she is sick, especially when watching and waiting is all you can do.

The leg thing is so weird....for any of us when this happens, something has to be causing it, but we'll likely never know what.

I'm sitting here jumping around tonight for no reason...nothing like you and I'm not saying it to say, oh poor me or to get sympathy, just noting that it's frakkin weird when it pops up out of nowhere. Like why for me? Like why for you, why? I haven't changed meds, nothing new is happening, yada yada.

The only thing that stays constant is how much I hate this dratted disease. Well, maybe that doesn't stay constant....I think I hate it more.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Mon Apr 20, 2009 2:21 am

Hey Ann ... and everyone else :)

Apologies for the radio silence. Seanna did get better; however I had to take her to three GP's to get the right diagnosis!

Now: for all those thinkin i'm after a sypmathy vote, chuck that thought in the bin. This is my "diary".

Just as Seanna got better, I went downhill so fast it was dizzying and it was utterly agonising. Extreme pain; torturous pain; couldn't even lie on my own bed pain!

What the? Yes, I was thinking the same thing at the time. I've had so many blood tests in the past two months I feel like a pin cushion.

The problem ... I'd gone from having an UNDERactive thyroid to a hysterically OVERactive thyroid.

Plain english? Ok, I had wayyyyyy too much Thyroxin in my body which sent every single nerve ending in my body (not kidding!) into super-ultra-sensitive mode ... which caused the excruitiating pain! It hurt just to lift a bloody finger! It also sent my metabolism into mega-overdrive as well. Unfortunately I didn't lose any weight, but it totally screwed with my sleep to the point where I was getting 0 - 2 hours of sleep per day/night. With my GP's blessing, I was maxing out on the Painkillers and then some.

So, Thyroxin medication was changed, again ... and two weeks on, i already know it's too low a dosage because i'm struggling to keep Ms Hyde in her box. But it is nice to be able to lie in my own bed without wanting to scream in pain lol. I'm slowly catching up on my lost sleep.

And just to add to my already hectic life ... I have an appointment with a NeuroSURGEON early next month regarding an unwanted "tenant" in my brain. Don't know if i'm facing Brain Surgery yet ... don't like thinking about it much.

How's everything else? Troy's good. Karrissa's loving High School and we just got her 1st Term Report and it was fantastic! We're going to be broke by the end of the year because unbeknown to me, Troy promised Karrissa $20 for every "A" she get's on her report cards. Bianca has settled into Year 5; and Seanna is loving Year 1.

On the RLS front i'm doing quite well, with breakthrough symptoms only occurring with the rain we've had.

So, that's me in a nutshell for the moment.

Take care all xoxo
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

ViewsAskew
Moderator
Posts: 14588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Postby ViewsAskew » Mon Apr 20, 2009 3:46 am

I was thinking about you a few days ago....hoping all was OK. Glad they figured out the problem. Sounds like all is going pretty well (all things considered). Yea!!!!!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Thu Apr 30, 2009 2:35 am

Just keepin a low profile until I have more thyroid tests next week, along with the long-awaited appointment with the neurosurgeons.

Will give an update when I know what's goin on.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Tue May 19, 2009 11:03 pm

Still here and still kickin.

Only trigger seems to be rain at the moment which I hate coz all i gotta do is look at the clouds to confirm it (no, not big fat grey rain-filled ones).

Have gotten the run-around from the hospital regarding the Neurosurgeon's. If they phuk it up again next week they'll wish they'd neva heard of me!

Other than that, just battling a head cold and diarrhoea for over a week. Had tests done, but all came back normal (as usual). Thyroid meds have been cut back as well.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

ViewsAskew
Moderator
Posts: 14588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Postby ViewsAskew » Wed May 20, 2009 6:17 am

I've been wondering about you. Thanks for the update. Will look forward to hearing about the neurosurgeon.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

User avatar
Neco
Posts: 2294
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Postby Neco » Thu May 21, 2009 3:01 pm

I have noticed cold weather seems to be a big trigger for me too... We have had a few days where the temp swung back and forth from warm to cold and on the cold days I could really tell the difference.

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Fri May 22, 2009 4:33 am

Yup Zach ... I detest being a walking Barometer lol.

I usually know there's rain comin up to 48hrs in advance. I tell people "Rain's comin" ... those who know me too well, know i ain't goofing ... those who dont, give me strange looks.

Five days and 21 1/2 hours to go til i see the Neurosurgeon ... not that i'm counting down or anything.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Polar Bear
Moderator
Posts: 6662
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Postby Polar Bear » Fri May 22, 2009 11:10 am

Best of luck with the Neuro.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Mon May 25, 2009 11:16 am

TOTALLY unrelated RLS topic here ... but hey ... i'm on cloud 9999 ...

BRING ON FEBRUARY 2010!!! We got tickets to AC/DC in Brisbane ... right near the stage!!! WOOOO HOOOO ... YEAH!!!

I quote a dear friend of mine: "Now there's a definite positive for you to hold on to!" ... To which I replied: "I aint lettin go of this one Tanya! I got my claws in it lol ... I am on such a high still hehehe"

Honestly ... "Big Day Out" - Meh ... Metallica were good ... Motley Crue were better ... but we're talkin Home Grown Talent here ... AC/DC's gonna be HUGE!!!

I'm hoping the euphoria keeps lastin for the next two n a bit days ... D-Day again ... It keeps popping into my mind, but then I keep thinkin "We Got Tickets To AC/DC!!!!" I have loved this band since I was a kid! Troy's seen them already once, many many years ago ... Me ... I don't ask for much in the way of gifts/presents/etc ... The last time I bought a new outfit for myself was over 3 years ago. The girls come first now. Just the magical experience will be enough for starters and the look of satisfaction on Troy's face when he see's me beaming will be enuff.

Metallica were brilliant ... Motley Crue (& Motorhead) were brilliant ... but AC/DC ... if ya an Aussie and ya don't know the lyrics to at LEAST 10 of the chart topping songs from the past 30 odd years they've been together, then ya don't deserve a ticket lol.

WOOO HOOO!!!!!

Oh bugga ... Two more sleeps ... and a few hours after that ... I'm scared coz there might be a link between what I have and something one of my Maternal Uncles has. He's a walking timebomb.

Enuff of that ... back to positive ...

Oh yeah ... A good friend of mine, Charmaine, saw the Neurosurgeons last Thursday. She has tumors on her spine.

She spent over three years kicking down Doctor's doors until someone finally did an MRI and CT on her spine and she's had to wait over another 2 years before a Neurosurgeon has FINALLY said "We'll take a look". By that, he meant: don't get your hopes up.

Charmaine has a 33% chance of becoming paraplegic, a 33% chance of dying on the operating table ... but a positive 33% chance that they can do something about it. She's taken the positive and run with it like a crazed bull!

I rang her on Thursday night and we didn't know whether to laugh or cry ... so we laughed hysterically! It's been such a long road for her, and her son, Rhys, who is an amazing young man. Charmaine would just love to go back to the way she was i.e. able to drive a car; able to lift things heavier than 1kg (not kidding!); have less pain; go back to a full-time job with the Army (they've got her working in Admin on very light duties).

Charmaine's been a fantastic support to me and she's been so thankful to know someone who's experienced such exasperation when it comes to dealing with the medical fraternity. Oh, and her birthday is the day before mine so when we get together ... look out ... coz we go a lil crazy lol. We used to work together when I was doing Bookkeeping. Oh it was fun!

Right ... lol ... oh i'm like a kid who's just got their dream present!

There were initially only 5 shows announced (Brisbane, Sydney, Melbourne, Adelaide and Perth); NOW there's an extra show in Brisbane and Perth; and 2 extra shows each for Sydney and Melbourne. I'm so glad they left Australia til last. We honestly felt left out when AC/DC announced their world tour, but didn't have any Aussie dates listed; it was worth the wait! We're gonna be in the thick of the moshing ... I'll worry about my legs after the show lol.

Ok ... i'll stop boring you with my teen-type hysteria lol. What can I say? I'm excited!!!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Tue May 26, 2009 11:27 pm

Hey Betty

Thankyou for the good wishes xo.

I'm a bundle of nerves and stress and trying not to show it.

As I type ... 26hrs and 38mins to go. I've rung and checked that the Neuro hasn't pulled a swifty yet and will ring again before we hit the road in the morning ... so far so good.

The axe in my head is still there ... i've just had to get used to it and try and cope. If i've had any migraines in the past 7 months they've gone totally un-noticed.

Will update tomorrow night with what the go is.

RLS has been playing up badly due to both stress and the weather.

Talk soon
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Sat May 30, 2009 3:05 am

Was too tired, exhausted and feeling like a science project to post the other night.

One of my best friends rang me and I couldn't even talk to her.

Consult: It's not causing any blockages but we'll do an MRI anyway; oh and you need to be referred to a Neurologist for those headaches. I know which three I DONT want to see!

Still just as disillusioned as I was back in October 2008.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

ViewsAskew
Moderator
Posts: 14588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Postby ViewsAskew » Sat May 30, 2009 4:21 pm

Oh.......
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Sun May 31, 2009 2:29 am

Yup ... you summed it up perfectly with that one word Ann
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Postby sardsy75 » Mon Jun 22, 2009 1:56 pm

Just three words today: I hate rain!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 3 guests