Fed fed fed up: Totally fed up been to see consultant... - NRAS

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Fed fed fed up

Deejojo profile image
Deejojo
β€’33 Replies

Totally fed up been to see consultant won't do anything else he says wants me to see a pain specialist wish I was dead πŸ˜”πŸ˜–πŸ˜Ώ

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Deejojo profile image
Deejojo
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33 Replies
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3LittleBirds2 profile image
3LittleBirds2

Wow...that's extreme you must be in a bad way! Sorry that you feel like this and that no more can be done. Is there any way you can get a second opinion?

hi Deejojo please don't wish you were dead your to young for that, i'm not sure what NRAS is but many people on here suffer with lots of things, we wish we could get better but never wish you were dead. life isn't easy i will admit, but just think how many friends you can make on here to help you cope with your health problems and may be able to help with advice for you. take care hope this gives you something to think about, if i listed all my illness you would be wondering how i'm still here. the secret my friends that care Alan x

Cal66 profile image
Cal66 in reply to

Hi

I was sorry to read about your health problems. I have never been through what you are, but I went for 3'years without sleep because of pain in my joints, it wasn't until I had a flair with my SLE that I was put onto amitriptyline. Amitriptyline helps by relaxing my muscles, which helps to relieve the pain & enables me to me to sleep. Though I do occasionally have a great deal of pain, then I am unable to sleep.

If you could get a weeks worth of sleep you probably won't be feeling so depressed, I hope that all of our messages helps a little to cheer you up. Have you got a sympathetic GP or a close family member/ friend that you could talk to? I Hope that you don't have much longer to wait before seeing the pain specialist .

I know you are a wheel chair user, like my self, but do you drive or if not may be you could try taking lessons or get an electric scooter & then you won't be so house bound. I am very lucky that I drive, but because I need to use a wheelchair & can't use my hands properly I can't leave the house on my own & so I need to rely on my family.

What ever you decide to do good luck, !you have taken your 1st step by coming on this site, so please don't think of suicide.

in reply to Cal66

hi there Cal66 yes i drive i've got a car and i've been driving for 31 years, ten of them driving HGV, and in 2009 that's when i had to finish work through ill health, one of my health problems is i have server sleep apnoea which means i stop breathing at night and i have to wear a C.P.A.P Machine every time i got to bed, and the doctors have said that i've had this condition now for 33 years to which they say i haven't slept, my doctor is a brill doctor, has for family/friends my family haven't spoken to me for 15 years in June and any friends i have are on here. i've had been on this site in march for a year and the amount of new friends i've made has help me to cope with my health problems so i don't feel suicide anymore. its been nice talking to you, i hope we can keep in touch to see how we are doing take care Alan x

in reply to

I could not have put it better myself a lot of people a no or few friends mine are mostly on here and they are very supportive

in reply to

hi June i hope your going to add me now to your list of friends take care speak to you soon Alan

Cal66 profile image
Cal66 in reply to

I also had to take early retirement from work or should I say was forced to take it 20 years ago, but I am constantly surrounded by my family.

My mum had a knee replacement before Christmas & she is fitter & getting around better than me

in reply to Cal66

hi cal66 i know how you feel i'm 48 years old and i had to finish work at the tender age 41 years old, i can remember working with my dad down the coal mines and he had to retire at 50, i'm just under two years away from what my dad was, its very frustrating i know, my mum whom i've not spoken to for 15 years that's her doing not mine, would have been dead if it wasn't for me getting her into hospital in 2010 with cancer in her right eye. i feel very frustrated because when i need help last year no one wanted to help me what's so ever. its is madding sorry don't know how young your are, but one thing that made me think about m life now, is yes i've got all these illness and my mum had one, but with friends from this forum have helped me and i've made many friends, and its these friends that are here to help you. i'm here if needed, the old saying you can choose your friends but you can't choose your family. take care i'm Alan here anytime you need help with anything. take care

Cal66 profile image
Cal66 in reply to

I was only turned 30, the inland revenue had me on probation for 5 years & I was under so much pressure trying not to take time off sick that in the end I had a serious SLE flair. I wasn't fit enough to return to work, they got what they wanted by pensioning me off & so I haven't been fit enough to work ever since.

I am so pleased that I found out about this site, as I have got to know quite a lot of people. Every one has different medical conditions, but we all I have the same problems with doctors or applying for PPS & we can all help each other with either advice or just by listening when some one needs to blow of steam, who ever set up health unlocked.com it was definetly a good idea to do so.

in reply to Cal66

hi Cal66 just to let you know anytime you need to let of steam or need advice please feel free to text i will do my best and if i don't know i will research to find the answer. unlike you i came of work do to being tired and falling asleep at the wheel (HGV DRIVER) and the more i was going either to doctors or hospital they would find something new, until June 2010 when they found that i had server sleep apnoea and that ended my driving job, i'm still allow to drive but i'm on a three yearly checkup now, plus i'm nearly 50 years old, i couldn't get a job even if i want to go back to work i couldn't, but like you when i joined here last march, wow the amount of friends i've made things i've learnt things i've helped other people with it brill take care speak to you soon your friend Alan

Cal66 profile image
Cal66 in reply to

Thank you

The wind was so strong today & I cleverly decided to close out 6 ft gates in the garden on my own, well the wind blew the gate out of my hand & knocked me over, so my sister & I were stuck at A&E all afternoon. I have managed to break my wrist, it's the 1st & hopefully the only bone I will ever break. I should have been more patient & waited for help, but clever me thought I could manage it on my own, but that's not going to stop me from attending the ball next month.

in reply to Cal66

hi there Cal66 you should have sent for me i'm 6 ft 3 inches tall it wouldn't have been a problem, but i know what you mean, at my last house my drive had two big 6 ft by 5 ft wide wooden gates, on boxing day(this is some years ago) the wind was so bad it blow both gates open and rip them from the two 4x4 posts i have them to, lucky i didn't break anything, but it took some getting back up. anyway how badly have you broken you wrist, hopefully if not to bad it should only be a few weeks and then the swelling to go down, just be careful what your doing take care hopefully speedy recovery Alan xx

Cal66 profile image
Cal66 in reply to

Thank you, it's a Scaphoidfracture, but other than that I have few bruises & I am stiff but I live to see another day, I'll keep taking the tablets.

Bye for now

in reply to Cal66

hi Cal66 may i send a kiss down to you to make it feel better, i'm glad it wasn't very badly broken bad enough but you know what i mean. hope the tablets work if not a bottle of whisky could help the pain take care big hug from me to help nurse your wrist back to health speak to you soon Alan

Cal66 profile image
Cal66 in reply to

Thanks Alan, but i'llskip the whisky as I don't drink.

in reply to Cal66

hi there Cal66 it was just a thought take care Alan xx

sylvi profile image
sylvi in reply to

Well said Alan.xxx

in reply to sylvi

hi sylvi many thanks

lainee profile image
lainee

I am so sorry you feel so down you have had a bad time of it and sometimes it just is overwhelming. I don't know what to suggest , is your gp supportive to talk to ? I hope you feel a bit better tomorrow xxx

nomoreheels profile image
nomoreheels

I'm sorry it's made you feel so low Denise. We put all our faith in them & when they say they can't do any more then we feel they've let us down sometimes, I know I've been there, or rather my h has but I was the one he needed for support. Talk to us or call the helpline tomorrow, they may be able to put you in touch with someone who's been in the same boat. Was he really as blunt as that when he told you? Pain clinics can be very helpful for most so hang on to that. Hugs (x)

Oh NO!!! How sad. Can you get a second opinion? Please feel free to post your frustrations, we are here for you.

sylvi profile image
sylvi

Now darling don't feel like that please as it would upset your family no end as i have learny that one. I explained to my family that it is me at my worst,but it hurt them that i wanted to die,so now i say it is the worst day of my life.

Go to see the pain specialist you might you might be surprised what they can off you. They might be able to give you something else your consultant didn't think of and darling don't despair there are answers out there somewhere. Big hugs from me.xxxx

cathie profile image
cathie

I'm not sure about the details of your condition and treatment but can share feeling in a hopeless state. A consultant took my meds away thinking I was n remission then when I became seriously ill she said she couldn't wave a magic wand.

What I did when I picked myself up a bit was to ask around on this forum to see if anyone went to the same hospital and if any of the other Drs were better. I found one and he is much more responsive and really helps to improve matters, even though I'm not where I was.

Could you get a second opinion like this? I had to go through my GP but she said this was quite routine.

Feeling so down is quite understandable all we can really offer is to hold you (virtually) and hope you can do something to comfort yourself.

Big hugs, Cathie

Deejojo profile image
Deejojo

Everyone's been so nice wouldn't dream of doing anything silly it's just the fact they wont do anything more like he said I can't wave a magic wand but surely there must be something

mary53 profile image
mary53 in reply to Deejojo

Hi so glad that you don't feel driven to act on how low you are feeling . In the past I have found speaking to the Samaritans can really help ....sometimes easier than talking to family or friends. I could talk things through, however bad. Hugs

denden profile image
denden in reply to Deejojo

Hi Deejojo how are you today? Just saw your post. I know exactly how you feel, my thoughts are just like yours. But have this forum and group most helpful and everyone friendly. Draw strength from us as you go through your challenges. We are here for you, for each other. Ok?

wishywashy profile image
wishywashy

The pain clinic I attend is a great help to me, the best thing that happened since the start of my treatment, these are people whose sole wish is to alleviate or eradicate your pain! You now have a new champion, Good luck!

DC56 profile image
DC56

Please don't wish that , I think most of us has been on a real downer with the pain just hope you'll get your app with pain people soon lol Dawn

cheeriable profile image
cheeriable

Sorry to here you're feeling so bad but pain specialists can be really helpful at times and may come up with medication and/or treatment to help cope with pain, which can make life feel better. You can always call Action on pain, a charity which you can google the number for. In the meantime I wonder if you can have a cube of dark chocolate?? it actually can really help how one feels, it's my favourite thing that the pain specialist advised me to take.............sadly it doesn't come on prescription!

take care

lornaisobel profile image
lornaisobel

hang in there - my brother saw a pain specialist who showed him how to manage pain among other things - he said it was excellent so give it a try xxxxxx

Tell us more Deejojo. You poor lady .... to be feeling like this. Tell us more about what you're after from your rheumy. Maybe some of us will have relevant experiences or ideas to share. Or just rant ... vent some more. Don't sit and fester please 'cos clearly we're all rooting for you!

pm52 profile image
pm52

Hi, so sorry you feel that bad, I agree with postlem put more info on here, there are so many of us with different diseases and treatments and experiences and we are all here to help you and to listen to you, don't feel alone, you're not, we are here to help, listen and advise if we can, hope you are feeling a bit brighter knowing we are all here to listen and help if we can, lots of hugs to you xxx

Ali_H profile image
Ali_H

Hey Deejojo,

Sorry to hear things are so shitty at the moment.... Maybe you need to take a day off from this RA crap and treat yourself to a 'home spa' day with bath bombs, smelly oils, foot soak etc or a duvet, movies and munchies day (fresh strawberries with ice cream does it for me) - I hope things get better for you soon

All the best

Ali

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