Off work again I can't take much more of this... - NRAS

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Off work again I can't take much more of this...

Helzbells profile image
12 Replies

Everyone knows the saga I've had and how I've had no treatment for my RA since last February.

I've been struggling with severe fatigue and flu like symptoms for about a year. The hospital aren't interested as only erosion counts as far as they are concerned.

I've been feeling particularly ill over the last week. The pain in my knees and elbows is constant and I feel sick most of the time. The GP insisted on seeing me again yesterday. I felt so guilty having only been there the week before. Turns out I have another infection. I am running a temp so back on antibiotics and antivirals. GP is convinced this is because I am so run down trying to cope with a disease no one is treating.

I was offered a place on a Masters degree last week that started today. I'm supposed to be there instead I'm at home in bed. GP said no way could I go and no way can I work this week. I know in my heart of hearts this is right as I can barely stand up.

The hospital have now chosen to ignore me. So is this it then? Unable or work or study or get on with my life because I'm deemed not worth treating because I failed on the dmards and don't qualify for anything else? I have fought for a year, the GP tells me to keep on fighting but I'm exhausted. I am about to lose everything at a time when opportunities had finally opened up for me. I'm struggling to carry on the fight or quite frankly carry on at all

12 Replies
Matilda7 profile image
Matilda7

Have just heard the end of an interesting phone in on ME on radio 4, the you and yours programme...might be relevant to some / many of us?

nomoreheels profile image
nomoreheels

Apols if this has already been suggested, I'm a bit behind on the newsfeed.... is your GP on the case finding you a second opinion/alternative hospital? Seems to me that would be the best move, you can't as he says keep on fighting that will only exacerbate how you are now as I'm sure he must be aware.

Neonkittie17 profile image
Neonkittie17 in reply to nomoreheels

My sentiments entirely, NMH. That's bonkers that they are only interested in erosion. I'm really angry actually. Helen you have been extremely patient. I would definitely ask your GP ASAP what other hospital(s) you could go to. Don't feel guilty you go see the doc. People will be going for far, far less. You have genuine major issues and things that need resolving ASAP. You will be so worn down if this continues. You want to start your Masters. I would have been devastated if my hospital had been disinterested and my declining health and mobility had stopped me doing my MA. They did enough crazy stuff surrounding me swapping meds and also failing to get me in soon enough for my infusion but it wasn't intentional. Just inept support staff and lack of communication. My rheumy was unaware of most of it,

Please think of yourself and of feeling better and starting your MA. Dont feel any guilt about asking to go to another hospital. You need to have your rheumy on your side and from what I have read .. That's not happened dear Helen. You have done the right thing letting your GP know everything.

Take a deep breath and go see your GP again ASAP and tell him you'd like to see another rheumatologist/change hospital. Gentle hugs. Kittie xx

sylvi profile image
sylvi

Ask for a refferal to another hospital from your dr.xxx

Beverley-NRAS profile image
Beverley-NRAS

I agree with NMH and sylvi. I think it may be a good idea to get a second opinion. You can't live your life like this. It's not right. You have to have some quality of life. Hope you manage to get something sorted and feel better soon,

Beverley (NRAS Helpline)

Mhairi54 profile image
Mhairi54

Am I right in saying that was a second opinion that you got? Can you ask/insist that you get a 3rd opinion? Is there a specialist somewhere that specialises in treatment resistant RA that you could ask to be referred to? Worth asking the question. Your GP sounds like she's/ he's really on your side. Maybe they could find out for you? I'm assuming you're in the UK? I would be willing to travel anywhere if i were as desperate as you! Surely they can't just leave you like that?! I really feel for you. x

Eiram50 profile image
Eiram50

Sounds horrendous and totally unacceptable . However, it does beg the question, why your gp is not the one doing the fighting , in your behalf??

Pamak profile image
Pamak

Oh this is so terrible for you😥 Surely the consultant can't just give up on you? Can they?

I really don't know what to say to help but will be hoping the best for you

Someonesmother profile image
Someonesmother

I am so sorry that you are being treated like this. It is heartbreaking and demoralising along with all the other pain and extreme fatigue. Is that the only hospital near you? Are there any options for a referral to another place? I do agree with your GP you do need to tell them to get a grip and start to treat you like a human being. Have you been to your local member of parliament, or is there someone who can advocate on your behalf as you are so unwell? All I can give you are gentle hugs and say I have been there and commiserate with you, but you are your only hope of things changing, so try and find the inner strength to stand up to them and yell TREAT ME.

Helzbells profile image
Helzbells

Thanks everyone. I did get a second opinion from a rather arrogant young man at Bristol who without examining me told me I had fibromyalgia and he didn't care how high my anti ccp was if I couldn't evidence inflammation then I didn't have RA.

Apparently I had evidenced it in clinic several times and as I can't get my rings or watch on...

The consultant says I've been diagnosed too early and there is no treatment for someone who has failed on dmards but doesn't have enough erosion for biologics.

I found an email address for him and emailed him which you aren't supposed to do. His secretary just called to say he wants me to phone him tomorrow.

I doubt I will get anything though. In his opinion the risks outweigh the benefits but he's not the one so sick they haven't eaten for four days

Pamak profile image
Pamak in reply to Helzbells

Have you thought of asking to be put on a trial? It may be the way to get onto biologics,

Neonkittie17 profile image
Neonkittie17

Hope the phone call goes well. My heart goes out to you. Gentle hugs. Do you take pics (or even a video to prove to them) of the inflammation to show them? (then one can doubt you.) My inflammation used to disappear each time I saw the rheumy early days and it took nine months for them to see it back in 1995 when I first had problems and I had no RA present in my blood tests. Then all of sudden I went from a normal ESR to 98 and two massively red hot swollen knees. It was evident in the clinic visit and she officially diagnosed RA. Although mine was a shorter length of time before anything could be "labelled" I understand well your frustrations. Thinking of you. xx

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