I try oh how i try......: To be upbeat. I don't know... - NRAS

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I try oh how i try......

sylvi profile image
28 Replies

To be upbeat. I don't know what to do with myself or where to put myself. Does that make sense to anyone. My toes,shoulders,ankle and fingers all hurt. I have spoken to a rheumy nurse,not my nice one the other one and she says go to see the dr. Yee right they won't do or give me anything and all they will say is go back to the hospital. Seeing as i am on so many tablets i don't think there is a lot else they can give me and i can't take morphene it makes me stupid.

It is not a good day today as i have been down here since 2am. I was with the wide awake club. I have been to bedworth with the hubby and did some walking round town,but even that didn't help. After hubby left for his computer i tried to rest and by the time hubby came home i sat here on my own brealing my heart out as i was in pain. THere are just days when there is nothing to do but just ride it out.

Well i hope you are all well.....xxxx

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sylvi profile image
sylvi
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28 Replies
aligator profile image
aligator

Hi sylvi,

I have not written much on the site recently but I do read the blogs. I just want to send my love & a hug to you. I am not sure what to say as I feel you have been suffering so much for so long. You give such support to others however you are feeling. I appreciate your honesty as it has been so helpful to understand this disease. So as you ride out this stage I pray you find something to take the edge off your suffering. Take care, my friend

Love Alison xx

sylvi profile image
sylvi in reply toaligator

Alison you lovely lady thank you. I start to feel on the good side of this disease and then it kicks me in the backside. I walked up the village sunday and though it was slow i managed to walk back,then monday i went to rosemary conley got weighed and did some little exercise and the walked round the village. Hubby picked me up from the rec.and brought me home. It was so windy i don't think that i could have walked through the rec anyway. Since then i have struggled. Today hasn't been a good one, don't think i will ever be painfree,so i just have to get on with it.

You take care as well my friend.xxx

nottsexsportfanatic profile image
nottsexsportfanatic in reply toaligator

U have said everything I would have liked to say. U r so right about the support sylvii gives.

I sometimes feel so helpless when I read blogs but sylvi always manages to offer empathy and support - thanku for this and I do sincerely hope things improve for u soon.

Tina

allanah profile image
allanah

hugs, real busy today, will explain but thinking of you xx

sylvi profile image
sylvi in reply toallanah

xxxxx

Poor you Sylvi - it must be horrible not getting any proper let up. Tilda xx

sylvi profile image
sylvi in reply to

Until i got made redundant three years ago i was not too bad. You wouldn't have known i had ra. Like you are at the moment,but sadly with me it didn't last. I think the thing that caused me all this trouble was the first knee replacement. But i am alive even if i am in pain,probally next week i will be different. Thats what i hope anyway.xxx

linbin profile image
linbin

One day at t time sylvi...((((((hugs)))) X

I just wish there was something that we could do for you. take care. xxx

sylvi profile image
sylvi in reply to

Answering by blog is enough as i know people do care how i am.xxx

Josie2 profile image
Josie2

Its an awful feeling when you feel like that.

I hope your feeling better soon, take each day as it comes.

Hugs

Jo

Xxxx

sylvi profile image
sylvi in reply toJosie2

Thanks.xxx

How strange I Have one nice nurse and one of the other sort too!!, Rest up keep warm im having flare too but bit better since steroid injection.. my registrar emergency appoint was eyeing up giving me oxycodone one of the strongest mophines aah.. aagh I Passed but maybe I Should have said yes?. in okay with oramorph liquid morphine ( oxycodone is an a different league!)I havent been on line much as yesterdays upset has aggravated my symptons.. both elbows now v bad!!! plus hands, feet etc bo ho xx

sylvi profile image
sylvi in reply to

I can't take morphene it sends me crazy,hubby says i am nuts without enough without it. Clare my normal has empathy wicth the other one doesn't sadly. I have been with clare from the start. She was workng in clinic whe i first nurse sadly died and she took over then. There is no reason or ryhme to this disease is there.xxx

Shell1967 profile image
Shell1967

Thinking of you sylv and wishing you a better day tomo.you were one of the first people to reply to my first blog,so you are very dear to my heart.i don't like to hear of you suffering,although you are very upbeat:)) love your blogs and I love how you genuinely care for others.i hope you have a better night tonight,lots of love Michelle xxx

jo100 profile image
jo100

Hope you get a little longer in bed tonight. Im up at 6 to work a 12 hr shift with my lovely mums and newborns. Xx

Hello Sylvie, I hope by the time you read this it will be friday morning and you will be feeling a lot better. You are so brave and determined, the fact that you are walking is great, it is not that long ago that you were unable to do that.

Would it be possible to go to your nice GP and look at all your pain medication and see if you could even take something different for awhile, I know that whereas the cocodamal used to work great on me now doesn't register much at all, think i got too used to it.

There is bound to be something else, you should not be in pain all the time, not a bit of wonder that it is so hard to function.

Really hope you sleep tonight

sylvi profile image
sylvi

Mads i am thinking about going to the drs, but i am always put off by the attitude of drs as they always tell me i am on a lot and they are all they can give me. I get so put off going to the drs. I have slept very well last night. I brought another different pillow yester at aldi and i used that and i slept vey well and i didn't have a stiff neck this morning which is a blessing.

I am very stiff again this morning,i don't know yet how bad it is as i have only just got up.Michelle and jo thank you ladies for your kind wishes,it is very thoughtful of you both.

Love to all of you.xxx

sarah1967 profile image
sarah1967 in reply tosylvi

hi, sorry to hear you have so many bad days, it was the talk of the pillow that caught my eye . what i will ask is have you heard of Tempo pillows/ bed toppers/ matters ? i bought a pillow and matters/bed topper they are expensive for the initial lay out. but since using them i have sleep't a lot lot better and take them everywhere with , when i visit/stay at my mums sisters , maybe its worth ago ?

sylvi profile image
sylvi in reply tosarah1967

Sarah i have an electric bed so the bed is comfy and now with the new pillow i don't have the pain in my neck now which is good.xxxx

parkie profile image
parkie

Hope you feel better PDQ, take care, Sending you loads of hugs, Ann xx

bunny1 profile image
bunny1

i dont write very often either,just read,there are so many things said on here that make you feel your not alone,and not the only one going through these things,hope you feel a bit better soon,you deserve a massive hug xxxxx

sylvi profile image
sylvi

Thank you my friends,just gone and overdone it a bit so i will be paying for it later. Never mind i ache if i do nothing and i ache when i do so whats the point.xxx

rattusrattus profile image
rattusrattus

so sorry you're feeling lousy. it's a shame you can't take morphine. my doctor upped my dose to 20mg in the morning and 20mg at night, they're slow release so apart from making me tired they don't seem to send me dolally. oramorph makes me feel a bit zonked but i try to just go with it rather than fight it and worry about feeling drugged - it's like a sleepy tipsy feeling but it's bareable. it's the constipation thats the worst thing about morphine for me ;)

also after a few months of taking gabapentin i can recomend it to you - i still get pain, but i used to be soaking and dripping with sweat and feeling so unwell i thought i would drop dead - gabapentin has taken the worst of that away.

i hope you feel better soon

sylvi profile image
sylvi in reply torattusrattus

I am on pregabalin for fibro,two types of tramadol and paracetamol and still it doesn't shift it.

Hoovered and polished and done the ironing,thats on top of going to bedworth in my scooter and walking round the town. My feet feel like i have been walking on hot coals.

The sweat keeps pouring off me and my hair is dripping wet and i only washed it last night.

Love to you all.xxx

Zigzager profile image
Zigzager

Hi Sylvie, just popped by same as Summer & saw with sadness your still endlessly suffering & have no relief pls go see the doctor there must be something someone can do, u really shud not be in this endless cycle of pain.

Hugs to you & hope by the time u read this u will feel better.

I don't blog much here anymore but still suffering from RA of course, I must do a blog as I promised if how much my life has changed sinced diagnosis and its not all bad!! In fact quite good in many ways . Currently have too many issues so when the time comes will bore u all silly .

Take care, Sylvie.

Xxx gina

That is kind zig, or rather Gina x

sylvi profile image
sylvi

Well girls,i am going to the drs on monday morning so i will keep you informed.xxx

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