Still waiting for rheumys!

Deedumdeedo

Hello all,
I have a few quick questions but first i will give you a little background as i have only made a few post so still a newbie!
I was diagnoised with RA a few months back by my GP (a number of blood tests confirmed their suspusions). I was then refered to the hospital under the orthopeadic docs, who saw me after about 3 weeks. They explained that a referal to rheumy would be more benifical as they deal with surgery and as i don't need this intervention, they couldn't help apart from to help me by sending me to surgical applicances for a funky space boot to help distribute the weight in my foot better. They also confirmed arthritis in both my feet, ankles and knee's. My Right foot being the worse affected hense why they only fitted an appliance to one foot. They went on to explain if i needed crutches i would need to see my GP. I asked them for some help with medication as i have other medical condition which means NSAID's are off the cards. To this they replied by saying they do surgery not medication so i would have to wait to see Rheumy.
I took the liberty of visiting my GP later that day and explaining the suituation. She prescried me some predisalone, which i have now been on at theraputic dose for the past 4 weeks. I would say it halted the inflammation from developing further but didn't do anything to the inflammation that is already there. I further spoke to the GP yesterday and she has said i need to start reducing my doseage. I'm not entitley comfortable with this as just recently my joints have been very painful and am worried that it is the steriods that are preventing a full flare.
I still haven't recieved anything from the rheumy docs, no appointment or confirmation of referal. I understand that different hospitals take different amounts of time to get appointments out, can anyone give me any idea how long they waiting for their referals. Can anyone shed any light on the next steps.
I know i am asking a lot, i'm not even sure if there are answers to my questions. I guess i am feeling a little low at the moment. As well as the RA my other Auto-immune disorders have felt the need to flare at the same time. I am struggling to get about (despite the fact i have 2 young children that need me). The space boot from the hospital helps with the pain in one of my feet but does nothing but put extra pressure on my already painful knee's. I have been very tempted to order some funky crutches off the net to cheer myself up a bit and possibily take the pressure off my joints a little but i feel like a bit of a fraud
Thanks to all that got this far, i know a lot of my post is gobbledegook!
Hope your all as well as can be
Dee
x

skezier

Hi Dee,

Nice to see you again and sorry things have been a bit grim there.

The first bit is always the hardest and rumo departments can either be fast or so slow. They also operate their own systems it seems.... Its all in the air till you get into the system really. Once in there you do have better appointments as they are booked in advance, mine between 3 and 6 months depending.

Once you see a rumo you will have far more idea and they do recommend both treatment and surgery though few do surgery so you then get referred to the ortho determent and the wait goes on......

I think if the preds are preventing a full blown flare maybe the doc is right to up them as it might hit the flare off and you could be a bit better then? Its all so hard flower but in time, after a few trips to the rumo, they do help to control the condition..... sometimes it can take a few trials and errors on different drugs but you will get there.

Pain relief is so important so if the ones they give you don't work don't sit on it see if you can get another change. Somewhere there will be the right combination and it will get easier. Hang in there and fingers crossed your referral comes through soon. Cris x

barbara12

Hi Dee
My love you are not a freud, you are suffering and you need help, I cant help with the RA, but I waited around 8 weeks for my rheumy appointment, If I was you I would chase up your appointment, quite a lot of things get missed in the NHS.
I do wish you well with everything, I am using one crutch at the min, and my grand daughters have decorated it...they said we dare you to go out with it, well I have...all that is missing is flashing lights.
You let us know how you get on.
Love and lots of hugs ((((((()))))
Barbara xx

dreamdaisy

My GP when I started all this was rubbish - totally dis-interested in my rapidly-expanding and hot left knee. I lost a year of possible treatment whilst I oscillated gently backwards and forwards between orthopaedics and rheumatology. Orthopaedics eventually did two ops on my left knee (and one on the right) whilst rheumatology pulled the short straw and ended up with me on their books - having firstly flatly denied I was their pigeon. Twerps.

Chase, chase and chase again. And get some crutches - they make a world of difference. Go to a specialist shop initially to try different sorts and find what suits - also you may be able to just have one and not two, it depends on how much assistance you need. Walking sticks do not offer as much support - well, that's my experience. I wish you well. DD

Deedumdeedo

Thanks very much for replies i really appreciate just being listened to.
I am feeling really low at the mo and everything is just getting on top of me. I feel very overwhelmed with everything that is going on. It's almost like i have been dumped into the deep end. I have had problems with my foot joints for years and have seen a chiropodist who intially diagnoised me with chilblains (my main problem area is the joint between my toes and feet, my little toe being the worse affected). The GP has suggested some crazy things to help like open toe sandels, in this weather?!?!
In terms of pain relief because of my other medical conditons i am on some very strong painkillers (slow release morphine tabs and oral morphine) which seem to have no effect whatsoever on the joint pains. Anti-inflammatory meds are completely ruled out so as painkillers go there is nothing additional that can be done. I was really hoping that there would be some practical help for me. The boot is good for my right foot and ankle but is causing my knee to be painful. My left is mirroring my right and obviously a boot on my left foot too is not an option. I have managed to convince my fella to buy me my pink crutches i have found on the internet so hopefully it is will help a little. I am patiently waiting for this rheumy appointment whilst doing some researching. I can't seem to find anything vaguely comforting.
I'm not sure if this post is going to make a lot of sense as i have taken quite a large dose of painkillers tonight as i have been on my feet most the day.
Thanks all
x

dreamdaisy

I suspect that most of us have been where you are, pain-relief aided or not. You ain't alone, stick with us, girl, we'll do our best to see you right. DD