I think I need help

hedgehogrose
hedgehogrose Member Posts: 4
edited 1. Sep 2013, 15:00 in Living with Arthritis archive
I am 40 years old and my problems started not long after my 40th birthday. It started with a pain in my left hand which soon spread to the little finger on that hand. The first GP I saw said it was RSI. Now I have been doing data input for over 20 years with no issues so I didn't believe her. The problems persisted and eventually spread to my left thumb. Anyway to cut a long story short I have now seen a rheumatologist who has said it's inflammatory arthritis. He prescribed sulfasalazine and basically sent me on my way.

Now, he did ask if I had psoriasis to which I said no. On reflection I realised that I did and have mentioned this to my GP and all she did was prescribe steroid cream.

My problem is that I feel that I have been told I have this life changing affliction but nobody wants to help me. On top of this my mum has been admitted to a local hospital and I have no idea how long she will be there for. So not only am I dealing with my health I am also dealing with my mums. My husband has been a rock but I feel guilty that I am laying all this on him.

Then today I cracked. I walked out of work after 2 hours and promptly broke down on the phone to hubby and when people started staring at me because I was crying I screamed at them to mind their own business.

I need help and I really don't know what to do. Can I ask for a different rheumatologist (and how do I know if he is a good one?) Can I get counselling? Can I claim benefits?

Please help me because I feel like I am losing my mind.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am so, so sorry you have had to find us. I am seventeen years in with my Life With Arthritis and yes, things have changed but then they would anyway, that is the nature of life.

    It sounds as though you have enjoyed good health up until now, is that right? RSI is something that build up over time so I can see why your GP thought that might be the initial cause of your uncomfortable hands. On the plus side (and yes, there is one) you have seen a rheumatologist who has told you the bad news but he has begun you on sulph, which hopefully will do the trick for you. I have a friend who has psoriatic arthritis (like me and possibly you) and his is controlled by sulph and no more. This could also be the case for you.

    I don't know how things are arranged at your hospital but I very much doubt that this will be the last time you see the rheumatologist. My hospital has a rheumatology helpline - does yours? This is the one you ring if things are not going too well and they will call back with help, advice and maybe make another appointment for you.

    It may be helpful for you to ring the Helpine here on AC - they are very good listeners and will be able to send you information leaflets - their publlications are on here somewhere but I lack the tecchy knowledge to direct you to them.

    I can't think what else to say that might sound even vaguely cheering as I am at a very low ebb myself but you are in good and understanding company on here and I wish you well. DD

    PS I love your username - it's a beauty!
  • hedgehogrose
    hedgehogrose Member Posts: 4
    edited 30. Nov -1, 00:00
    Rheumatology Helpline!!!! I really don't know if there is one at my local hospital - it certainly has not been mentioned to me by anyone.

    This is excatly what I mean. I have been told that I have arthritis but no-one has told me anywhere I can go for help or advice. It was just 'here are these tablets come back in 3 months but keep up the blood tests in the meantime'.

    Will Citizins Advice help me? Or maybe a local chartity that helps with disabled people? (Am I now disabled?)

    Anyway, this forum has been a revalation to me. I didn't realise that arthritis affects so many people so young - I always thought it was an old persons problem - I have so much to learn.
  • barbara12
    barbara12 Member Posts: 21,267
    edited 30. Nov -1, 00:00
    Hello and welcome to the forum
    I am sorry you are being treated like this, but one things I have learned from the forum is you have to make yourself heard....I would get back in touch with your rheumy and make another appointment.or speak to your GP..sadly you are not on your own ..there are many on here that have been sent away with no proper treatment..
    I do hope your mum will be ok ...and please let us know how you get on x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello again, how are things with you today? I have been thinking about you and I hope you are feeling at least a little better in yourself and that your mum is as OK as possible.

    You have been very fortunate in seeing a theumatologist so quickly - I began my first arthritis in 1997 but didn't see a rheumatologist until 2002. I think that one of the most important features of a doctor / patient relationship is that each should make an effort to get on with the other - any doctor is limited in what he can offer meds-wise, and sometimes it is a case of trial and error until you find the one that works for you, but it has to be a two-way conversation.

    I'm not sure why you feel the need for counselling - these are very early days for you as yet and it could well be that the sulph will be sufficient to bring things under control; how much did the rheumatologist tell you about the cause of inflammatory arthritis? Regarding claiming benefits, well, I doubt very much that you will be successful on that front. There are people in far worse situations than you who are being turned down, but by all means try. I have been claiming higher rate mobility DLA for a while now (my days of walking without aids are long gone) but my situation is very different to yours and, once I am moved to the new system called Personal Independance Payments, I won't be at all surprised if the funds I currently recieve are either reduced or stopped altogether. :lol:

    I hope that things are settling into a clearer perspective for you. DD
  • stickywicket
    stickywicket Member Posts: 26,766
    edited 30. Nov -1, 00:00
    I'm sorry you feel so low, HedgehogRose. A diagnosis can come out of the blue and floor some people. You are lucky (although it might not seem so right now) that it has been diagnosed so quickly, before damage can be done, and you have been established on the right medication. Inflammatory arthritis is a broad, umbrella term and Psoriatic Arthritis is just one type of it. The good thing is that, whether yours is PsA or not, you're on the right meds for it so why would you want a different rheumatologist?

    I wonder what sort of help you would like. Arthritis Care put out lots of info if you go to the 'Publications and Resources' button at the top of the page. We are all here for moral support whenever needed but, alas, no-one can say what the future holds as we're all different. It's very tough that your mother is also ill right now. Stress is not good for arthritis so I hope that particular area of stress will soon be resolved for you.

    Remember that, although arthritis will change your life to a greater or lesser extent, not all the changes will be bad. Some can be very positive.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi again, hedgehogrose,

    Sorry you're having such a tough time at the moment. Being diagnosed with a chronic illness isn't fun for anybody, not to mention the additional stress you must be feeling due to your mum being poorly.

    You can ask for a different rheumatologist, of course. From your post, I get the impression that you felt let down by just being prescribed medication. Rheums do vary in their approaches, some quite standoffish, others more caring. My first rheum was a bit of a pompous @rse, worse luck, but the rheumatology nurse was lovely, so that made up for his shortfalls! Have you been put in contact with a rheum nurse yet? Having the opportunity to discuss things makes for great therapy, especially at the early stages.

    As for benefits, as the others mention, Arthritis Care provides a lot of useful info. I contacted Citizens' Advice when my own health deteriorated and I faced losing my job and not being able to pay rent etc. It can be a very anxious time, but the help and support is there for you.

    Best wishes,
    Phee
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi hedgehogrose, I've been living with Arthritis for near on 20yrs, If I told you everything I would need pages and pages! Short version is started with pain, got fobbed off, went to different G.P got me body scan, got diagnosed with Osteo-porosis. Started getting pain in other joints, got diagnosed with Osteo-Arthritis in other joints. Got moved to new Rhummey consultant and got Rhummey nurse, finding new meds to help!! That's where I am now. The Arthritis journey is a long one with lots of ups & downs. We all have times when all we want to do is scream and feel out of control. I've had that feeling this morning because of sorting out the new benefits, the filing them in and then waiting for an answer is so stressful, my OH is so sure I'll be fine but I can't have his positivity after hearing from others. I won't stop stressing till I get the answer in black & white.
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Hello
    Sound like you are panicking and honestly please don't.You are doing what I did...get ahead of myself.Thing is arthritis is variable and if you get good treatment things can be ok.Maybe a little bit different but not awful.Wish I'd have known this when I first started getting it it is easy to look on the net and think 'that will be me I'm doomed.I'm prob worse than you and someone else is prob worse than me.Nearly always someones worse off than you.Also right now I doubt you are disabled.I have arthritis in all my joints and I don't know if il get benefits eventually I want to work anyway and put my degree to some use.
    Anyway take care x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello hedgehogrose, how are things with you today? DD
  • frogmorton
    frogmorton Member Posts: 27,642
    edited 30. Nov -1, 00:00
    HI Hedgehogrose

    lovey to meet you though I am sorry you are having such a rough time :?

    The 'diagnosis treadmill' Can be a long one and frustrating one and it can take much trail and error to get meds 'right' for each of us.

    All I can say is we are here to listen and support you and offer any tips we have picked up along the way.

    Take care for now and keep posting

    Love

    Toni xxx

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