Argh dont think im getting the right care! opinions needed

callums mummy

Hi everyone,
I havent seen my rheumy for years always fobbed off to rheumy nurses who have recently changed and i feel they are not very helpful! im 25 with two young kids been on (excuse spellings) hydrochloraquine, methatrexate, gold injections, leflunamide, sulfuzalazine, penaquil, humira and now Enbrel. Ive been on enbrel for a year and its the first drug my body has tolerated which is great but im not getting much relief. I can see deformity started to happen in my hands and my nurse dismisses this as "inevitable" I havent had x rays for three years and they showed erosion then. They said they would refer me to OT which never happened. I went through social services to get one and waited a year. Someone i spoke to was diagnosed one week and had OT at her house the next!! We see same rheumy!
Am I being written off because im so young and intolerent of most meds???
Saw nurse on monday and told her I felt awful very sore and run down. mouth full of ulcers always ill etc. So she's stopped enbrel for two weeks! as you can imagine I'm in agony typing this is hell but need to talk to people. I asked for steriod injection she said she didnt see point as last one did nothing for me and she would see if there was a different type of steriod i could get nxt time when I go back in a month.
I dont think I can take much more of this, I'm such a strain on my family! Hubby is always off work to care for me I cant even look after my own kids! I'm on prozac but that doesnt seem to do the trick anymore, I keep thinking my hubby and kids would manage better without me.
If your still reading this thankyou from bottom of my heart x

salamander

hi CM,
sorry to hear you are suffering so much. Did you manage to get an OT assessment in the end? If not, you can contact one of your local councillors and they will make sure it happens. Once you've had an assessment you can ask for a social security assessment to see if there is more that can be done for you in terms of practical support. I have found it painfully slow (no pun meant!) to get any help in place and it seems to me you have to be desperate to get it. It's all the wrong way round, in my view you should get help early not when you are on your knees.

Can you ring you rheumy up? That's what I do.
Hope you get some help soon.

Chinup

Hi salamander

I have just posted a simerler post, sorry to hear how you are feeling, I know what you are going through My mind is at the same state, I feel nobody listens to how bad I am. i do hope you get sorted, your family need you. I am a bit older and have two grown up children and a eight year old at home I am only going on for him. Please be strong and I hope they sort you out with correct treatment. x

tjt6768

Hi Callums mummy, sounds like you're having a really rough time, just wanted to say I hope things start getting sorted for you and soon...

Tony

roses1

Hi Calums mummy,

Have you got the rheumy's e-mail address? You could then write with your concerns and ask for referral. Or GP.
i know how you feel , i waited 5 yrs for my appointment for an OT for some splints for my hands! had to go back to drs and tell him i hadnt heard anything :roll:
It is a long process to get the right treatment , i'm still waiting!
Remember your family love you dearly and you them, they need you ! i too feel useless but we have to remember our families would much rather have us with our ailements than not at all.
Theres a lot of support on here and lots of advice it helps us keep going , rant whenever you like say what you are feeling no one judges , we are all in the same boat. It may be the one thats sinking but we try to have a laugh as well so pop over in the chit chat have a natter, a laugh and pop in the cafe for free drinks and calorie free cakes

I'm sure someone will be along soon with some better advice
you can always ring the helpline too.

Take care

Rose x

chris7

Oh dear

I really can't advise at all, but am sorry to see you feeling so low and fed up with it all there and just wanted to call in and acknowledge your post. Do hope tomorrow is a little brighter for you, but do keep posting and let us know how you are. Leaving some gentle hugs and sympathy. (((( ))))
Chris