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Date: 01.11.2010
From: kazzie

Subject: am fed up and dont wanna carry on

hi am sorry i know the orther post all like me but for a week now i cant move i havent slept all night my neck and shoulders feel broke i cant bend my head as feel like my head weighs bout 10 stone cant eat as got mouth ulcers my wrist and hands are so swollen my hips in agony i am takin pain killers and i might as well take smarties i just dont know what to do .am lucky my mum is here again doin my ironin has put laptop on my knee as cant even pick it up .i am seeing ot tomoz but just dont know what to do with myself I WANT MY BODY BACK how do people cope sorry am goin on
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Date: 01.11.2010
From: Lynn B

Subject: Re: am fed up and dont wanna carry on

Hi Kazzie, (((((HUGS)))) Sorry you are feeling so bad. Are you still taking the mtx with the sulpha? what pain meds are you taking? If you are still taking the mtx then thats what is causing the mouth ulcers (Your mouth will slowly get better) it takes a while for your body to tolerate the drug. I think you need some good pain meds until your other meds kick in for you. Have you tried the wheat bags you put in the microwave, you can wrap that around your neck, and also round your wrists. sorry I am not much help hope you get some relieve soon. Take Care. x
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Date: 01.11.2010
From: Angela

Subject: Re: am fed up and dont wanna carry on

Hi Kazzie,
All Lynn b's advice sounds good, I might add i was told that extra folic acid can reduce the mouth ulcers and also epson salt baths, (if you can get help to get in and out of one) can sooth the body a bit, and if you can tolerate it if mum could give you a gentle massage to take away some of the stress off your shoulders that might also help sooth you a bit.You need as much t.l.c. as you can get at the moment.
I am sorry you are feeling so bad to, hopefully it wont last too long. Take Care
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Date: 01.11.2010
From: bsk

Subject: Re: am fed up and dont wanna carry on

Hi Kaz, so sorry to hear you are having a rough time. Have you got a specialist nurse? Ring her or the consultant - they may be able to give you something to help. You shouldn't be suffering like this.

It is a very hard illness to cope with. I don't cope very well some days. Others are a bit easier. Just hang on in there hun! You will have better times and hopefully the drugs will work for you.
xx
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Date: 01.11.2010
From: kazzie

Subject: Re: am fed up and dont wanna carry on

hi i am not on mxt now as couldnt toletrate it am on sulspur now and takin codine and ametrimpline for pain killers but not really helpin have had a hot water bottle on my neck back and shoulders all day i am at the hospital tomorrow at the ot so goin see what she suggest thanks for all help it just really gets me down when i cant manage my house luckly i have a brill partner
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Date: 03.11.2010
From: ScaryFeet

Subject: Re: am fed up and dont wanna carry on

Kazzie
You almost sounded like me when I posted the other day - I know exactly how you feel, I wish I could give you a miracle cure........

I take folic every day now even though I've stopped the mtx as its still working its way out of my system........
I take diclofenic 3 times a day, gabapentin & tramadol 3/4/5 times a day and lorazapam at night when I need to - even though I'm a bit dopey sometimes I get through some days...others, 2 tramadole and a hot blanket on the sofa and sleep.............

Red wine helps me too - although you would need to speak to your Rheumy to make sure you are ok to drink - I have 1 -2 glasses most nights & my liver function is fine........its my bank balance that suffers!!

I'm now taking lefluomide & hydroxycloraquinine (spelling!!) and hope to start a Remicade infusion before Xmas..... I stopped the sulfa when they started me on Lefluomide.......

I think BSK is so right, you need to hang on in there, they will find a cocktail that works better for you soon - until then keep coming here and getting cyber hugs

xxxxxx
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Date: 03.11.2010
From: kazzie

Subject: Re: am fed up and dont wanna carry on

hi scaryfeet i had a awfull day yesterday ended up in and e as was in so much pain so am now back on more pain killers and they goinj try ,me back on mxt althouh thatmade me ill the doctor gave me 2 steroid injections in shoulders which seem to have helped ,am sorry bout moanin it just gets to me when in this pain and i cant move .hope yoyu and everyone ok
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Date: 04.11.2010
From: ScaryFeet

Subject: Re: am fed up and dont wanna carry on

Hi Kazzie
Sorry to hear you've been having a time of it - hopefully the steriods will help while the mxt kicks in.
When I first started on it I was unwell too so I started taking my weekly dose at night before bed - I found that I wasn't half as rough - just a bit more tired the next day - maybe thats something you could try???

Please don't think you are moaning - and even if you are thats OK too!!! We've all earned the right to have a blinking good moan whenever we blinking well like - its just about choosing the right people to moan to and thats why we are all here.........

If I don't always come back to you straight away its because, like you, I have my up and down days and I don't always want to sit in front of the PC plus I'm studying at the mo (for a qualification in a profession I've now left because of this bl**dy disease) and need to try and use my brain for that!! But you can always post and I'll read it eventually!!

Hey - the sun is shining, the leaves are a beautiful colour and we may have a horrible illness but it could be worse we could be Gordon Brown!!!

Big hugs
Lisa
xxxx
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Date: 04.11.2010
From: kazzie

Subject: Re: am fed up and dont wanna carry on

lol thanks scary feet that made me laugh thanks for that am feelin a bit normalish today and hope you are to
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Date: 05.11.2010
From: Dalton

Subject: Re: am fed up and dont wanna carry on

Hi ScaryFeet,

How do you find taking Gabapentin affects you? What exactly where you prescribed it for? Sorry to be invasive but I take Methextr, Sulphasalazine, Tramadol and Amitriptyline and now the Consult has prescribed me Gabapentine because of Numbness and pins and needles are nerves are becoming trapped and inflammed by RA. Im reluctant to take it though with all the other medication so perhaps you could let me know what you think ? Thanks
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Date: 05.11.2010
From: ScaryFeet

Subject: Re: am fed up and dont wanna carry on

Hi Dalton
I was originally prescribed it because having RA wasn' enough for me - I had to go a get shingles as well!!!! They gave me Amitriptyline but I am already on anti-depressants and taking these on top made me feel really sleepy and I was still trying to work at the time...so they tried me on the Gabapentine instead... Once the shingles had cleared up I was still getting the pains in my ribs where the spots had been so the GP suggested I stay on it - I also find it helped with my anxiety.....now I wouldn't be without it - although it doesn't stop the pins & needles and numbness - unless I've had a couple of glasses of wine then everything feels better!!!

I'd say give it a go - give anything a go within reason if the professionals think it may help

x

PS You weren't being invasive by the way - its how we all learn from each other.......
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Date: 05.11.2010
From: Scaryfeet

Subject: Re: am fed up and dont wanna carry on

Hi Kazzie
You sound a bit brighter - I'm glad I made you laugh!!! Its the one thing I try to do every day, make someone smile.........it makes me feel happy too.........let me know when you need another dose!!

I'm OK today, just the usual moans - but I've got the neighbours and their 2 kids coming for sausage and mash and fireworks and I've spent all day just getting the spuds ready and peeling onions!! I'm knackered - hope they bring really loud bangers or I may fall asleep during the fireworks!!!

xx
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Date: 05.11.2010
From: bsk

Subject: Re: am fed up and dont wanna carry on

hi Kazzie, how are things? Hope you are more on top of things. Was the OT any help? I found mine really good, especially with some small things I was having trouble with.
xx
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Date: 07.11.2010
From: Doreen

Subject: Re: am fed up and dont wanna carry on

Hi Kazzie, I am sorry you felt so awful the other day, and hoping you feel a bit better today. Due to all the folk who replied to you, they all helped me cheer up too.
I think most of us feel like you at times Its great to be able to say how you really feel and know that we all understand and support you through this patch.
Scaryfeet, made me laugh too, maybe that is what we need as well, something funny to lift our spirits when were down.
This is the first time I have joined a forum, it was really to see how other people coped with RA or was I moaning about nothing. The help
support and understanding everyone has for each other is really good. thank you for helping me today Doreen
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