I am so fed up of feeling ill and never seeing a brig... - NRAS

NRAS

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I am so fed up of feeling ill and never seeing a brighter day....

sylvi profile image
27 Replies

I hae RA/Fibro/ back that is riddled with arthritis and i am anaemic among other things. I don't feel well at all i am in pain, tired,fatigued and so damn exhausted,i am not sleeping well either. I go to the drs and its a waste of time as they say they can do nothing for me. I feel like going back to bed and never getting up again. I am on a barrel load of drugs and yet i still feel bad. I have seen rheumy and i am seeing him again in 2 mnths time after i have had scans on my hands. He know i am in pain.

The only thankful thing is my darling hubby who won't let me give up and he takes great care of me.xxx

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sylvi profile image
sylvi
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27 Replies
Mmrr profile image
Mmrr

Sylvi I don't know what to say other than I wish you well. Kisses for you and your wonderful husband xxx

VeronicaF profile image
VeronicaF

there is a sliver linging ahead, just you can't see it at the moment, they say feeling depressed is really deep rest, that's what you need deep rest being pampererd and self TLC

its hard to see the light at the end of the tunnel,we all have those times and forget when we feel great at times

you will again just for now deep rest

lots love xx

Ruth12345 profile image
Ruth12345

Dearest Sylvi there is little to say except love and gentle hugs to you. Dig deep and rest. X

nomoreheels profile image
nomoreheels

I feel for you Sylvi but I also feel for your dear husband. I'm living with someone feeling the same, with his fourth physiologist to try & help come to terms with things & to top it all at the Vascular clinic appointment yesterday was told that his arteries aren't good. He should keep his legs, but they think his problems stem from his back injury. He's like you always in tears in never relenting pain, feeling this is it now for the rest of his life as nobody can do anything for him.

I don't have the answer but do send a big squishy hug. x

Gnarli profile image
Gnarli in reply to nomoreheels

I can't " like" your post. It sounds an awful situation for both of you and I truly wish you could some relief. No answers but huge virtual hugs

J

nomoreheels profile image
nomoreheels in reply to Gnarli

Thanks Jan. I need them at the mo. Just been to the chemists & he slipped off the kerb, went a real cropper. Once he was ok to I tried to help him up but just couldn't. Fortunately a passer by came to help. x

Gnarli profile image
Gnarli in reply to nomoreheels

Oh heck. That's just what you didn't need. I wish there was something I could say or do. Hugs not on ration x

nomoreheels profile image
nomoreheels in reply to Gnarli

Thanks Jan, much appreciated. x

LesBev profile image
LesBev

Oh Silvi. It’s no consolation to know lots of us have similar lives but you are so good and positive to everyone else honey please try and accept our care back at you...

I sometimes think back to my hippy days of wanting to live in a commune. Full of people who suffer like us but help each other in whatever ways they can. Between us we have all the skills we need. Including , im sure, a comedy expert! It’s my down day dream anyway...to create a supportive small world.

Big hugs to everyone in pain today. I know some of you will think “ put up pretty pictures and be positive, not gloomy”...but I’m having an RA painfest too and just found out both hips need replacing ..some days it’s just hard.

Lesley x

Gnarli profile image
Gnarli in reply to LesBev

Don't like your news but perhaps replacements will alleviate the pain. Fingers crossed

J

LesBev profile image
LesBev in reply to Gnarli

Thank you Gnarli, isn’t it good to be able to find support on here.

Hugs to us all...x

Smiler53 profile image
Smiler53

Sending you Big, Big hugs Sylvi. Hoping that you have a better day tomorrow. Constant pain really does drag you down doesn't it? Thank goodness you have such a wonderful husband, he's a treasure. xxx

sylvi profile image
sylvi

Thank you all very much for your kind words and yes it is nice to know we are not alone,but it feels like it when your having a day like i am today. I love you all.xxxx

Nsmith13 profile image
Nsmith13

Your so lucky to have him , I've felt just like you for sat couple of weeks, just keep getting more tabs thrown at me and don't even mention steroids up down up down like you say docs no more idea than we have my rumatoid nurse brought my app forward if anything like last time total mix up be a waste of time again x

popsmith1874 profile image
popsmith1874

Sending hugs Sylvi and hopefully better days ahead, take care and rest up well xxx

Happygranny1958 profile image
Happygranny1958

So sorry to hear how bad you are feeling Sylvi. You certainly have a lot to cope with. Stay cosy and just rest up, hopefully you will begin to feel a bit better very soon. Big hug. X

Gnarli profile image
Gnarli

I truly wish there was a solution for you, Sylvi. You have so much to cope with and I wish you didn't. Huge gentle virtual hugs

J

It is hard to know just what to say to you Sylvi as I feel the same myself. On over 30 tablets a day a and still in severe pain and can hardly do anything. I feel like I can't go on like this so many times. My husband is mostly good and does all the housework and cooking etc, but he does get impatient with me at times and moans that he can't get on with all the things he wants to do. To top it all I have now been told that I may have heart trouble as well because I have odeama, breathlessness and a lot of sweating. With all my other illnesses as well, it just seems overwhelming at present and all I try to do is to keep positive but it is far from easy. I am off for my flu injection soon. My days seem to be taken up going to hospitals and doctors and I can think of better ways to pass the time.

I do hope that you feel at least a bit better and more positive soon Sylvi. Much love to you and some gentle hugs. x

janny55 profile image
janny55

sylvi I hope your feeling a little better today, I wish I had a magic wand to wave over all of us, sadly I don’t, keep your pecker up,thoughts and hugs are with you both 🤗x

helenlw7 profile image
helenlw7

Thank goodness for good husbands. Yours sounds like a real gem. My health is nowhere near as bad as yours but I also have days I feel like not getting out of bed ever again. Please don’t give up - we’ll miss your beautiful pictures. Have you ever thought of stopping all your meds and seeing what happens? I sometimes think of doing it but I haven’t really got the courage! It seems as if many of mine are to counteract symptoms caused by other drugs.

Simba1992 profile image
Simba1992

So sorry Sylvi, I do so hope that things would get better soon. Thank you again for the lovely picture. You garden at least must give you joy. Take care.xxSimba

sylvi profile image
sylvi

Morning everyone,well i feel god awful this morning. I had a sleep yesterday afternoon and felt well enough to go out with the family last night. I thought about the wisdom of it by the time i was ready to out. My family was pleased i went and i won a stuffed cow in the raffle. Well i had a dreadful nights sleep was awake just about every hour. I got up and shuffled downstairs and took my drugs and i am laying here waiting for them to do their job. Well how do i feel,well my fingers are swollen and sore,my knee is more swollen this morning my neck is rough this morning as well. I think it will be back to the drs tomorrow to see if someone can give me some answers. It is very frosty outside this morning coming on top of the rain we had yesterday the cards seem stacked against me at the moment.

I hope you all have a good Sunday and painfree as well. Thank you all for your lovely words of comfort and support.xxxxx

Someonesmother profile image
Someonesmother in reply to sylvi

Sounds like things are not going well Sylvi. I feel your pain. I have started with a new rheumy who says I am between RA and PsA and has no idea what is really wrong. Has started me in a biosimilar of Enbrel to see if that will work. I have hyperparathyroid which has caused high uric acid adn kidney stones that have gone on for about a month now. Lots of other stupid things but I must say I am absolutely fed up of being in pain, dealing with medical people and feeling like crap. Let's have a big cry together and maybe we will feel cleansed afterwards. Big hugs

sylvi profile image
sylvi in reply to Someonesmother

Oh that is such a good idea a good old howl always helps.xxxx

Someonesmother profile image
Someonesmother in reply to sylvi

Yep and I think I am coming very close to doing just that. heheheheh

Shalf profile image
Shalf

We won't give up on you either Sylvi. It's very depressing and scary when doctors, rheumys etc can't offer more solutions. Sometimes we ( ourselves) have to look and decide what's best for our health and body. Can I suggest you take a bit time to write down what you do as soon as you get up in the morning. Your routine. Breakfast, stretches, meds, how much you eat / drink and what. everything really. Write down your usual daily activities, ( including sitting time at computer) over a few days And read what you have written. Are there adjustments that could be made? We find ourselves in automatic mode at times and not really thinking what we are actually doing or how perhaps a task may be contributing to pain. It's kinda looking at yourself from outside the box. I did that and changed a few things...for the better xx

sylvi profile image
sylvi in reply to Shalf

Good idea darling.xxxx

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