first ra apt at hospital

painx100

went for first ra apt at hospital today (having waited over 9 months) and was expecting a miracle. unfortunately have to wait another month to have scans done but the pain is getting unbearable. why can't they do the x-rays/scans in one go? i have been prescribed practically every med there is by my gp who in the past year has not seen me or called me in he just does everything by phone. liquid morphine handed to me like a bottle of water (useless stuff anyway as it fuzzes up your brain whilst the pain is still as bad in your body). any one have any uplifting information they can send my way? i'm not depressed but i am really depressed. came on out of nowhere and not sure how much more i can carry on in this state.

chrisb

Hi @painx100,

Welcome to the versus arthritis forum.

I sympathise with your situation, it must be a very frustrating process for you. Hopefully things will speed up for you post scan. In the interim, there's lots of useful information on our website and relevant discussions in our forum for you to join in with.

Here's a relevant place to start:

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

There are many forum members who have found themselves in a similar position so hopefully they can provide some support for you.

Best wishes

ChrisB (moderator)

Eeyore

Hello painx100, I (literally!) feel your pain. Alas, the NHS is in a parlous state and it's so difficult to get the help we need. I too have R.A. and had a long wait of several months to see the consultant but in the meantime my GP prescribed Prednisolone (a steroid) which reduced the pain significantly. This is normally prescribed by the R.A. consultants and I am surprised you were not prescribed it at your hospital appointment. Worth asking for it, I would suggest.

My R.A. came suddenly and painfully out of nowhere, too. Goodness knows why but now we have to find a way to live with it. And we need help from the professionals to get this wretched condition under control. In the meantime this forum has lots of helpful people and I found it good to know that I am not alone.

painx100

eeyore - thank you! i had x-rays but have to wait a month for a scan (if i'm lucky - nhs and all!). consultant said he couldn't prescribe anything until he'd seen the results. in the meantime my gp who in the space of 10 months has never called me in and never seen me just prescribes willy-nilly just about everything there is in the pharmacy cupboard. the majority of stuff just play havoc with my brain whilst ignoring all the pain. worst is in middle of night going for a wee! can't even pull me knick-knacks down or up and going back to bed can't pull the duvet up coz my hands are frozen! making a cup of tea a no-go. holding things a no go. so much i can't do and no help whichever way i ask for it. 19 minute phone call back in jan with gp CRYING over how much pain i am in and he told me to "google it" as there's nothing can be done for arthritis. 2 months later unable to move my neck the physio sent me for blood test and i have very high ra markers and since then waited for my "expedited" appointment which was yesterday. as a person that doesn't suffer from depression i AM depressed! it's almost like you now have to diagnose yourself and then BEG your gp for help. gp's by definition should be DETECTIVES. how the frig can they detect over the phone? my gp has now told me that my ferratin levels are very low and i am allergic to iron tablets so he just said i need to change my diet and this without seeing if i am 6 stone or 40 stone. asked him who was going to be paying for the food bill as i am on a budget (ain't we all!) and he said "can't help you". everything is done with a google link for a video - isn't that why youtube exists? so years of med school and they just want to youtube you? as my ferratin levels are low red cell problems the fact i can't take iron means that the gp expects me to wait until i have a heart attack or a stroke or just croak and then the hospital can deal with the aftermath? i do not and have never understood why people work at a job that they just don't care about or want to do. my gp speaks to me in a monotone bored voice as if i'm bothering him. unfortunately for him it just makes me want to bother him more so from NEVER using ask my gp i now am on it regularly as i want it in writing AND one month 29 requests for pain and still no invitation to have a look at me! i truly am just waiting to die…..

frogmorton

Oh dear me @painx100 you aren't being treated well at all.

I waited months and months to see a rheumatologist myself the first time too and that was 15 years ago (or more I think). For me though I had the Xrays, a steroid jab in my rear and was prescribed my first DMARD there and then.

Some of us have taken matters further when we have felt we are not getting good care by the medical profession contacting PALs? have you heard of them?

Is there no other GP at your practise you can speak to instead of the unhelpful one? there is plenty which can be done as you probably know as no doubt you did google it.

Finally I hope you are really not feeling too low. By that i mean so low that you feel life isn't worth living? You know you can always ring the helplines here - I myself have rang them twice and they were just so kind and supportive. I bawled for a good 10 minutes the first time and whoever it was just waited it out. the number is at the bottom of the post from ChrisB the moderator. If you feel scarily low you don't forget the Samaritans are available 24 hours a day. I'm probably over-reacting just want you to know that gosh we understand and hope you feel a lot less alone now

Toni x

painx100

talking to "help" is all i do. at the end of the day i'm in pain and i've been left in pain. i applied for pip because i can't boil a kettle, i can't cook and i keep falling over and hurting myself because my ankles or knees go at any time. pip lied but i had the foresight to record (with permission) the call. they said that i could cook a simple meal! i told them i drink a cup of cool tea (because if i spill hot tea on myself then i will be burnt) and i have to put my elbows on the table and use both hands! i don't use a microwave because i can't carry it from kitchen to dining room. husband does all that. they said i could walk 200 metres when i told them that i can't as i have to stop and lean against a wall. i go out once a week for milk! they made out like i'm out every day here, there and everywhere. this is why i am low. the pain, the lies and the fact that i'm being ignored. ra markers very high and still gp said nothing until i was in so much pain from my knees that he did (a locum) call me in and then said i had a low grade fever which is normal for ra sufferers. so i have all the symptoms but none of the help. the main gp (the phone call one) just gives me medication options and tells me to think what i want. liquid morphine? told him that was "end of life" drug but pain got so bad that i'd've taken anything to make it stop. to wait another month for a scan and no interim drug that could be of benefit is so bloody depressing! i struggle everyday with the simplest of things. can't do knitting, sewing, crochetting etc all the things i did before ra hit me. weight piling on like billy-o and i'm told to exercise? exercise? walking to loo is an effort so how do they suppose i exercise? so many "solutions" but nothing to help my pain. dwp and capita just don't want to help the very people they say the benefits are there for. every avenue a dead end. when i phoned up versus arthritis (and cried through most of the call) i did feel somewhat uplifted BUT the first hospital appt was nothing like i was told it would be. i'd like to know what the 4 huge vials of blood showed that were taken from me but i've no one to ask! just have to wait for a letter that may or may not turn up and as we head to x-mas a months wait might even be next year. my frustration is lack of urgency and lack of compassion.

painx100

@frogmorton: thank you for message - i have just sent email to PALS. what do you think they will do for me? i'm sure they're inundated with complaints but mine is not really a complaint its more of i didn't feel that i was treated and diagnosed but left to suffer until i get a scan date which, as consultant said " may or may not" show. i thought one look at my joints and my old blood tests would give a basic idea surely? thank you again

Eeyore

@painx100, I hope PALS come up with some help. Your GP sounds very uncaring and it's ridiculous that he hasn't even seen you. Phone conversations are all very well but they do not beat a proper face-to-face meeting. My situation re: R.A. mirrors yours but at least I have decent GPs at my practice. The problem I have is the R.A. nurses at the hospital seem to work by "tick boxes" and stick rigidly to "procedure" and I feel I am being treated as a problem but not as a human being. Like you I have to use both hands to hold a mug, daren't try to pick up a saucepan or kettle - thank goodness I have a loving and helpful husband or I would be suffering from scalds from hot liquids and probably malnutrition! But all I get from the nurses is "it's a long journey". I was near suicidal with the pain a few weeks ago but was given a steroid injection in my backside which has reduced the pain considerably to a bearable level. It won't last forever but I'm thankful for even a temporary release from agonising pain. I have been given some exercises by the physio from my GP surgery but was told to only do them within my pain limits so some days I can do more than others. So on I plod, hoping for a miracle. I know that eventually I will be able to lead an almost normal life once more when they get the meds right. And so will you. Hang on in there and don't be afraid to ring the helpline again. Crying is cathartic and perfectly acceptable, you are in great distress and no-one here will judge you. I think we've all been there at some point. I certainly have - my poor husband bears the brunt!! BTW, I have only had X-rays, I would have thought an MRI scan would be helpful and I was expecting one but……..I don't know if other R.A. sufferers have had MRIs?

painx100

i was told x-rays don't show ra - yet i've had them. was told even scans don't show. my hands are swollen and my fingers bending out of shape. and yes! what would we do without our husbands! but at the end of the day they can't take the pain away. i had an mri on my foot (another debilitating condition that warrented me a blue badge thankfully) and the ra consultant was a bit taken aback that i told him of this. he spent the first 5 minutes typing my medication - why wasn't that done before hand? gave him a list of EVERY meds that gp prescribed and side effects caused. other than "do you work" and "why are you using a walking stick" "x-ray" and "a month for a scan" that was it! maybe instead of telling him that the stick was because my knees and ankles go at any moment and i don't want to make an **** of myself falling over (as i have fallen over in the garden, into door frames, table corners and metal wiring and even off the kerb whereby NO ONE came to help me up! (isn't the #bekind movement so very very kind??!!?)) but what i should have said is that i use it so that i can smack idiots like you asking me stupid questions! does he think i use it for fun? hate the thing! but i realise that it's me and me alone and the "caring" profession just don't care anymore