Future seems bleak

pinkladyc
pinkladyc Member Posts: 3
edited 6. Oct 2012, 05:11 in Say Hello Archive
Hi

I have been suffering with joint swellings and pain for a year now. I have had several blood tests that revealed nothing. Finally i have been referred to a consultant but no appointments until end of November.

The GP has given me numerous meds but nothing has worked. My GP believes i have seronegative arthritis.

I am a mature student at uni and have just landed a job with the prospect of using my degree to get a better paid job within the same company which was very exciting. But the pain is more regular and i wonder if i am going to succeed in what i want and how this is going to effect me.

comments appreciated.

Thanks

Comments

  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    Hello pinkladyc and welcome to the forum.

    If your GP thinks sero-neg and has referred you to a rheumatologist then he's doing the right thing and, I'm afraid, these consultations can take some time to arrange. When you do see the consultant, if (s)he agrees, you will probably be put on some medication that will hopefully keep your arthritis under control.

    This won't necessarily take the pain away but, if you are in the early stages, then it might. If not, your GP can top it up with pain relief. You say that nothing he has given you has worked but any or all of these might work in conjunction with a disease modifying med. I hope so.

    How is it going to affect you and your job prospects? How long is a piece of string :roll: We are all different in how aggressive the disease and how amenable it is to the meds. At this stage I believe you should think positive and hope you'll be one of the luckier ones. I was diagnosed at 15, got a degree, worked for three years before my elder son was born and my RA really did start to kick in. But that was a long time ago and the meds are much better now. I hope all goes well for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello pinkladyc and welcome from me too.

    I completely understand why the future seems bleak to you at the moment and I always think it is hard to cope with something when you don't really know what you are coping WITH if that makes sense.

    Early rheumatology referral and early treatment is known to be really important so I am really pleased that your GP has recognised what he believes to be the early signs and has referred you to the rheumatologist. I am sorry that none of the meds your GP has prescribed have helped but, if you do have inflammatory arthritis, then the rheumatologist will be able to prescribe the specialist meds to try to bring the arthritis under control.

    Sticky is spot on with her "how long is a piece of string" because inflammatory arthritis affects us all differently and we all react differently to the meds. But on a positive note, maybe my own experience will encourage you. I was diagnosed 17 years ago with "aggressive, erosive, seropositive, RA with a bad prognosis" - and although I would by lying if I said those 17 years had been easy, for most of that time I worked more than full-time in a busy stressful job. On my 40th birthday, I decided I had had enough of the stress and was lucky enough to be able to leave my stressful job to take a lovely part-time job in a local tea-room. I cycled a couple of miles to work and back each day, and was on my feet at work all the time, carrying heavy trays up and down the steps. All that was made possible by the meds which helped to keep the inflammation under control and to limit joint damage - and new meds are being developed all the time. The tea-room job would never have been possible before the latest generation of meds became available, by which time I had had RA for about 8 years and been through pretty much all the other meds available at that time. It has only been the last few years when I have not been well enough to work - and ironically it was an unusual allergic reaction to one of the meds which was the trigger for giving up work - rather than the RA itself.

    I fear I am rambling, sorry, but hopefully my story will give you some encouragement.

    If you re-post your message on the "living with arthritis" forum, I know you will get some more replies because most people look there regularly. We are a friendly bunch and you will be made very welcome.

    Tilly xxx
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi and welcome. You have already been given good advice. It can take a while to get a diagnosis and meds sorted. However once that is done, most people with Inflammatory arthritis carry on working full time.

    Forums such as this are full of those seeking a diagnosis, those newly diagnosed and those more severely affected. Try to make a note of your symptoms and take photos of any rashes or swellings, as they tend to disappear for your appt!!

    A positive attitude can really help, but we often have days when it all gets 'too' much. Try to listen to your body and rest when you need to.
  • pinkladyc
    pinkladyc Member Posts: 3
    edited 30. Nov -1, 00:00
    Hello all

    Thanks very much for your comments, you are right about not knowing what I'm dealing with which makes me scared.

    I guess i need to wait until the appointment so i know what it means and what i need to do. I have been living with the condition on and off for a year but now suffer most days and the pain combined with the uncertainty makes me feel a little negative. When i found this forum i thought the best way forward is to try and educate myself more. Your comments are helping me to do that.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello and welcome from me too. I'm in my sixteenth year of this malarkey, I have an auto-immune type and the joint damage from that has led to OA in my knees and ankles. I am used to the constant pain and have found the best way to manage things is to pace myself. I know I have limitations and I usually manage to live within them but when I don't I fully accept that payback will occur. Have you looked at the Spoon Theory? That is a very good explanation of how we have to manage our energy resources (which can vary from day to day) and there is also a piece called There's a Gorilla in my House - that's my favourite. I have had a very stressful week (my MIL died on Thursday morning after a stroke the previous Friday) so my gorilla is chest-thumping and baring his teeth in full 'I'm the boss' mode. :roll: Today he can be but tomorrow I will seize back control, well, I'll try to. :wink: I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben