24 hrs in a&e on c4 [slight edit]

[hamble99b]

this had a young man with an incurable condition called behcet's.

it's one that flares up until uncontrollable, unmanageable pain which means 999 and a&e for stronger pain med's, rest and obs, often with admission.

YET, to look at him, he looks like a healthy young 24yr old.

Isn't this the same for many with FIBRO !

HOPEFULLY, people who don't understand how bad things are for us, might have seen this.

I watched it and so wished it could be cured for him. but, also wish it could be part of standard training for atos, gp's and government to watch.

sandra..

[ladymoth]

I bet he got short shrift from Atos, too! As do people with sickle-cell disease, epilepsy, myasthenia gravis etc., etc.- so many non-visible conditions! Although these days, even people with very obvious disabilities are shoved back into the job market!

Moffy x

[diane63]

I watched it to, and sometimes I am rocking with the pain, crying and in agony, yes this lads pain might be worse , and I do get it, but, wonder what they would do if I turned up in a & e with fibro pain xxx

[hamble99b in reply to diane63]

oh no I wasn't saying his pain was worse, I'd never suggest that anyone's pain is worse than our own diane.

I was just highlighting that those of us who live with pain are not treated with respect or properly by those that make decisions about our lives because we can look ok despite how we feel.

I hope that you find some med's that can help. I am sorry are having such a rough time. Have you a good gp?

sandra.

[diane63 in reply to hamble99b]

Honey I was not meaning that, like u, people pain level is all different x

[hamble99b in reply to diane63]

true, and so hard to see,

night,

sandra.

[Hidden]

Anyone in absolute agony should go to a&e .... it just might not be fibro pains for once .. so please go if you are in agony. Why would you think automatically that if you turned up in agony with fibro pains at a&e you would be treated any differently .... I have had 11 ops while I living with fibro and each time I have had to stay in hospital longer because of the pain I get with fibro as a reaction to ops and I have always been looked after well in various parts of the country ...

Have you had a nasty experience ??? If you have you should complain

Vg x

[Aisha in reply to Hidden]

I watched that programme too but he doesn't have Fibro but I did feel sorry for him! - am going into hospital very soon I wanted to stay in hspital but they've said I can only go in as a day case even though I'm having 3 very large swellings removed!!

[Hidden in reply to Aisha]

You may well find if you are in pain they will keep you in longer ... They have done with me .. When I just wanted my bed at home .. But I have to admit they were right ...

Good luck

Vgx

[Aisha in reply to Hidden]

Thanks Vg its going to be done some time in July I've had my Pre Assesment yesterday, will let you know how it went and if I stay in or not! Aisha x

[nanatre]

I watched the show and was open mouthed when they kept waking him up when he passed out in pain! leave him, let him get some relief.

I understood what you are saying, yes he looked like a normal young lad, and when he is ok I bet he has a job getting people to understand his condition. Bless him.

I have been getting terrific pains in my lower back, pain shooting across my bumcheek, pain so bad I couldnt walk/sit/lay. I went to the doc, she gave me a leaflet on exercises to do with a bad back, I asked if it could be anything, she said even if it is all I could give you is pain meds which you are on! I know there is something wrong with my spine, if she is not bothered why should I be, so, I plod along.

[hamble99b in reply to nanatre]

I couldn't understand them waking him up either!

years ago, after months of awful screaming pai in my neck & shoulder, I was fitted with a soft collar, instant relief

they fittedit nd said it might make me dizzy, to sit where I was for 10 mins, she'd check if I was ok and I could go home.

she left the room, remembered her pen and popped back 2 mins later - I was fast asleep, and.smiling!

sandra.

[hamble99b in reply to hamble99b]

pai = pain

[Mdaisy in reply to hamble99b]

Hello all,

I didn't see it but will catch on iplayer as I often watch medical programs

Looking at the NHS choices for Bechet's under CNS inflammation & treatment it may provide an explanation why the nurses were checking his conscious level as the more serious bouts look like they need other treatments to minimise the risk of lasting damage I would imagine.

I expect a nurse in this field would be able to confirm this or elaborate on this further. I never came across it in my nursing but did encounter other lesser known illnesses

Emma

[hamble99b in reply to Mdaisy]

Behcet's is a form of vasculitis, an auto-immune disorder.

[Mdaisy in reply to hamble99b]

nhs.uk/Conditions/Behcets-d...

Sorry forgot to post link San, it has symptoms related to CNS inflammation and here it says about possible serious cases having paralysis

So I expect they were doing routine Glasgow Coma Level checks as per procedure.

[ladymoth]

I guess some people are just unlucky with hospital visits - it happens with all illnesses, I think. I have always been treated with the greatest kindness when I have been in hospital, but if I was ever treated badly, I would make one hell of a fuss!

Moffy x

[ladymoth]

Re the young guy with Behcets - yes, they would have been checking his consciousness levels, as there is a risk of stroke in the acute phases of the disease.

Moffy x

[tulips123]

Twice I've been to A & E in severe spasm, I was treated with a great deal of kindness and IV morphine.

I think it could be down to luck, whether you're treated by staff who understand or not!

Tulip

[punkrockchick]

Hi guys I had two stays in hospital this year and swore to my mum I'd rather suffer alone than go back awful experience for me treated like I was attention seeking and accused of just wanting drugs heard the nurses say her vital signs are great she's just at it I was trapped in my pain must have saw 10 different docs that stay met a really nice doctor near end of stay and never saw her again she issued fendynal by gum to speed up pain relief exactly the drug I wear as pain patch and they couldn't wake me slipped into a drug coma scared the living daylights out of them and in the end was blamed by my GP for this out come her words were what do u expect with all the meds ur on for your mental and physical health I took this further wanted answers and yet today the hospital will not talk with me to understand what happened to me in their care I could hear everything going on but could not respond if hospital ward would talk with me I could tell them what I felt trapped in my own body I m not causing trouble just want some answers was told I will never get them no a patient of theirs now ever heard the likes my mum is well angry at my care I received now very scared to go for support I've been bedded for months my pain is uncontrollable felt for the guy on tv chronic pain is no joke for any of us my life is sedatives to knock me out people can be so cruel when not willing to understand and my GP can't even get help from her or the other doctors there thank god for my amazing mum me and her gonna fight this carry on messing with my medical care and mum is one pissed off lady now and got tribural for benefits too the report they have on me is an different person wish it was me but not so fight that too soon what is wrong with folk today that will sit and watch us suffer I have to wait 2 yrs for a carer its mad so the months go by stuck in my room I hope and pray we all get the relief we deserve gentle hugs x

[vella]

A lot of treatment variations occur from hospital to hospital, surgery to surgery,, and doctor to doctor,, my GP is an angel compared to most,, he says he believes I know more about my condition than he does because it is more personal to me,, but he is learning, all the time, and is happy to learn,, he never talks down to me and is always prepared to listen if I have found any "new" information,, BUT,, there are 2 other GPs at the same practice who "don't believe" in fibro,, they are firmly of the opinion that we can "pull ourselves together" and be better,, I don't know enough rude names for them! I often wish I could give it to them, just for a couple of weeks, so they could feel what we are "just whinging" about!!

I think it would be handy if we lit up, a really bright blue, or pink, when we hurt,, so people could see our pain, our tiredness, SEE US!!,, see how much it take us just to live some days....

"may all your days find you in peace and leave you in hope"

gail