So fed up with this pain right now....

tjt6768 · 20. Jan 2012, 21:19

hi folks. Just needed a rant..
For over a yr now I've stumbled from I've flare to another and would like to think I've not botched too much about it..
Well I've had enough tonight.. I'm exhausted and just want to sleep, my shoulders, elbows and hands are really starting to pee me off, this is painful so I'll not go on too much. Ntt legs and especially knees are as bad. Cannot get comfy no matter what I try.
someone please use the lump hammer, I'll gladly allow it :roll:

Sorry for the moan

flossy47 · 20. Jan 2012, 21:46

Hi. Feel free to rant. I know that feeling very well. Sorry to see I'm not the only one awake and in agony. Different reasons though. Yours is arther, mine is actually the pain meds. How can something that is supposed to stop pain making me feel so bad?
Sorry for moaning.

PollySid · 21. Jan 2012, 00:37

I hope you have both managed to get to sleep by now.

I have problems the other end of the night. I was up at 4.15am again this morning. I did go to bed at 9pm though, so got a reasonable amount of sleep.

I get so that I can't sit any longer because of the discomfort in my legs and back, so I go to bed early, as mine is improved when laying down (I suppose it takes the pressure off the spine).

I am regularly up between 4 and 5am. (6am is a lay in for me)

Polly

Colin1 · 21. Jan 2012, 02:35

Join the club, been up most of the night its a while since i have been this bad. i think its the FM more than the RA tonight. I'm going to have some breakfast abot 9 and see if i can go to sleep for a while. Cant remember being this tired, this lack of sleep doesent help just makes you feel worse.
Cant do the sleeping tablets because of heart problems.
Colin

frogmorton · 21. Jan 2012, 04:32

Dear Tony

l am so so sorry. You have had a really rough patch haven't you since you joined the forum almost :? :shock:

In your position l tend to give up on sleep...last night l nearly ressurected the old 'night owls' thread on chit chat. Eventually things ease and sleep comes back.

A HUGE stack of ((((())))) from me to you

Love

Toni xxx

dreamdaisy · 21. Jan 2012, 05:07

Manly hugs comin' atcha: ((((())))) DD

kellerman · 21. Jan 2012, 06:30

Tony.....You know we all need a rant....and where better to come than here.
Lack of sleep is one of the worse things we can have...leaves us so tired all day.
Take it easy and I hope you have a better night tonight.
May

theresa4 · 21. Jan 2012, 06:39

Tony you rant away. I've just had a steroid so I'm sleeping loads at minute but prior to that I know how you feel ... And will be joining you again in 6 weeks or so.
Theres nothing worse than being exhausted but sleep evades or even worse your woken by pain. I found even dihydrocodeine didn't help as I woke from pain early hours. Or had nightmares depending on how much id taken.

Hope you managed to drop off ok and got a few hours at least.
Sending you some optional hugs (((())))

stickywicket · 21. Jan 2012, 07:21

All things, including pain, are worse in the middle of the night. Sorry it's so bad for you, Tony. I'm with frogmorton. I just give up trying and, if I have the wherewithall, get myself a cuppa. I hope you got there in the end.

tjt6768 · 21. Jan 2012, 10:13

thank you, everyone of you.. Finally feel asleep around four, ended up watching a film on my phone with the headphones in.
Managed to sleep till about nine, but got up around half ten.
I don't want to start adding more pain relief to the mix. Already on the paracetamol, diclofenac and 75mcg of fentanyl patches. If I could have managed getting up last night I would have gladly swigged from the oromorph bottle, but it's way up above head.. Three pained are all still there but we had to go see my brother today. Back home resting now. I am still exhausted too.. Bloody arthur..
Just dropped the box of cereal all over the kitchen floor thanks to the left elbow, I mean, it was hardly heavy.. :roll:
Oh never mind eh?
Someone kick me up the bum..
Thanks for the hugs and support everyone. Appreciate it a lot.

Hope you're all ok today?

jillyb1 · 21. Jan 2012, 10:30

Our poor , Tony , I am fortunate that hubby is my full time carer ; if I'm awake so is he . We sit up and chat while drinking copious cups of tea ; then both doze during the next afternoon waking in time to watch Star trek at 5 . Yes , we are very sad people ! Sending hugs to you and Janet , hope you get a decent kip soon . Jillyb

stickywicket · 21. Jan 2012, 10:53

tjt6768 wrote:

Someone kick me up the bum..

First of all you suggest the lump hammer, Tony, then invite us to kick you up the bum. I believe 'provocation' is a recognised defence. Easy does it, mate.

Hope you manage better tonight. Maybe leave that oromorph within reach? Or, at least, just a short walk away - enough to make you think but not so far you can't reach it having thunk.

I know what you really want is just a few more of these rare ones from me. ((()))

tjt6768 · 21. Jan 2012, 12:22

oh sticky. You know me so well, lol
Don't worry, I'm offering immunity to anyone taking me up on the offer of violence.

Jilly, bad thing is poor Janet needs her sleep more than I do, I hate the fact that I keep her awake so I try my utmost not to. We still haven't received the expensive bed we've ordered from nightmares but the temp one is a decent memory foam matress so at least it doesn't move too much when I'm shifting constantly..

I think the oromorph will be placed two arm lengths from me tonight. I'll only take it if I really have to.

ruby2 · 21. Jan 2012, 13:41

Hi Tony nice to meet you.
My probs with the pain is mainly my hands although other bits have started to creep in.
I spent most of last year in a mega flare and my hands were virtually no good, so I understand your problems.
The Rheums tweeked all the meds the GP added solpodol (full strength) and I got some good relief. Paracetamol on going to bed helps me, but cant be taken with the solpodol ( I save them for very bad days).
I hate asking for help to do things , and I bet you are the same, but then doing the things tends to lead to pain later in the day.
I hope you get some respite soon , in the meantime ((hugs)) to soothe you.
Roo

dorcas · 21. Jan 2012, 14:20

Hi Tony

So sorry you're having such a bad time just now with pain and lack of sleep :roll: ... it's so draining on mind and body... no wonder you feel so tired.

Depending on how it's been prescribed for you.....I wonder if you'd be better taking the oromorph before you go to bed? rather than waiting to take it in the middle of the night when you're in agony and not able to sleep?
I've come through a bad patch when like you I could not get comfortable because of pain / and the pain would disturb me whenever I tried to turn over in bed. I was reluctant to take Oxynorm when my rheummy prescribed it for night pain worrying about addiction issues among other things... but since taking it as prescribed I have to admit it has helped me with the pain/ sleep.
These are powerful drugs and obviously not to be messed about with, but your doc has given you the oromorph to help you and to avoid breakthrough pain.....

One Lump hammer coming up..... but it's for using on arther, not you!

Hope things get better for you Tony ... and other peeps going through the same experiences.

Iris xxx

tjt6768 · 21. Jan 2012, 14:38

thanks Ruby, Iris..
Really appreciate the messages..

The oromorph was what I brought home from the hospital after my ops last year for break through pain.
I suppose that IS what I'm using it for.. So I'm not cheating :shock: I've also no other way to go.. I'm on max paracetamol, two lots of 75mg/sr diclofenac, and two patches of fentanyl totaling 75mcg changed every three days.. that's a hefty amount already I suppose.. Just not enough sometimes..

dorcas · 21. Jan 2012, 14:55

I can so empathise with what you're feeling Tony... the frustration and exhaustion of living with constant pain.

:roll: ... and of course you're not cheating!

I'm not much help... but I had a long period of intolerable joint/ muscle pain too (kept me off the forum for many months). It's only since the rheummy tackled the arther (PA/OA) by putting me on Tocilizumab, that the PA has started to come under control and the pain reduce to more manageable levels... with the aid of Oxynorm at night.

Forgive me for not remembering... but is it OA or RA/ sero-neg arther that you have? I know they don't prescribe anti-tnfs / biologics for OA . sorry if I've gone off on an irrelevant tangent. :oops: just wish I could help...

Iris xx

ichabod6 · 21. Jan 2012, 15:02

Hello Tony,

If there is one coming up in your area go on
a Challenging Pain course. It's a two session
course and it just might help you. It certainly
did it for me.

tjt6768 · 21. Jan 2012, 15:19

thanks Ichabod, will look out for one.
Iris, I've got OA in spine and knees and sero-negative in elbows, wrists hands and knees.
I'm also on sulfasalazine. Been on out almost three months. It's cleared the skin up on my hands a treat and my stomach is about 85% better too..

Cheers folks

CJHunter · 21. Jan 2012, 15:28

Tony, I just wrote same time as u obviously and my post has gone to outta cyber space so this one wont be so lovely and supportive :roll:

have u been to pain clinic, tried accupuncture, tens machine??
cant think of what else to suggest and wanted to suggest summat for you friend.

heres a big one of these((((((((((x)))))))))) perhaps that may help a little

ruby2 · 21. Jan 2012, 15:35

Thats interesting about the sulfa helping.
I have taken it for many years, yet have recently developed PA.
I will ask about upping it at my next appointment.

I cant live without the Diclo the pain controlled to some degree with that.
Have you tried the co cos? or maybe amitryp?

Sorry if you have mentioned these. My eyes and head are a bit fuzzed.

ROO

tjt6768 · 21. Jan 2012, 15:54

hi CJ, ROO..
over the past (way too many) years I've tried pretty much all the pain dullers and tens, acupuncture, pain clinics etc.. That was for the OA that I've had for a lot of years. Now I've got the added bonus of the sero-negative, woohoo.. Lol
I couldn't tell you which pain is worse thinking about it, they're very different beasties indeed..

Thanks again for your support

barbara12 · 21. Jan 2012, 16:29

Oh Tony
Please dont say sorry for the rant, you really do deserve one, and hopefully just getting it all out will help a little,
But I do understand some of what you are going through...some being the operative word...Sending you loads of hugs to keep you going ((((())))...I do hope that things improve very soon, I really do.

tjt6768 · 21. Jan 2012, 16:35

thanks barbara, you're a true sweety..

barbara12 · 22. Jan 2012, 05:40

Morning Tony
Just want to send you some more healing hugs...I hope you managed some sleep last night
You take care ((((())) x

julie47 · 22. Jan 2012, 07:23

Morning Tony

Sorry I missed this yesterday and hope that last night you had a half decent sleep my friend.

Hope that today you are feeling a little better

Take care
Love Julie xx ((((((())))))

So fed up with this pain right now....

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