Struggling tonight

catwhittall81 Member Posts: 2
edited 28. Jan 2014, 04:29 in Living with Arthritis archive
Just popped on here as I really just need to say how bad I'm feeling tonight.

I have sero-negative inflammatory arthritis (which started after a total hysterectomy 5 years ago) and over the years have had Hydroxychloroquine (which didn't help), sulphasalazine (which made me so ill) and methotrexate. The methotrexate worked so well but unfortunately it was stopped in November as it was affecting my liver function too much (I'm now waiting to see a gastroenterologist).

So, since November I've not been on any treatment and it's really getting to me now, the fatigue is a killer, my joints are so sore and swollen, especially my hands and feet....I am still going to the gym to do gentle workouts which helps me mentally but now I'm really struggling. I'm not allowed any new treatments until I've seen the gastroenterologist about my liver and it's getting my down now.

Sorry, guess I'm just feeling sorry for myself tonight, but this pain is awful. I'm waiting to see a foot and ankle surgeon for my feet (I can't move my ankles very well and finding it painful to walk on my right foot), I guess at 32 I just feel like I should have more "ooomp" so to speak...I know there are people who are worse off then me but at the moment it's hard to see straight through the constant pain and fatigue :(


  • Gsxrick
    Gsxrick Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi there
    Not really much I can suggest as I haven't even been diagnosed yet but I
    Just wanted to say sorry your feeling so bad, but you are doing so well to keep getting up and going to the gym! Sometimes even doing something that you think is small is a huge achievement .
    I hope u get your meds sorted soon and can start to look forward.
    I know it doesn't help but just wanted you to know someone's listening and cares
    Chin up and all the best hope u feel better soon
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    No wonder you're feeling so rough :o Please don't apologise. This sounds like a classic case of right hands and left hands not communicating with each other. I understand that you can't do meth with high ALT levels but that should mean a quicker appointment with the gastro. Someone should be fighting your corner here. My first port of call would be my GP or, possibly, enlist the aid of your Rheumatology Helpline people. It's a perfectly reasonable request.
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hi and welcome to the forum
    Sorry I cant offer any advice..I have OA, but I am so glad you have found us, like you say you need to get it all out how you are suffering really does help to talk about things, and family don't always understand.
    Could you not ring your rheumy or GP and get it over how much pain you are in..things can be fast track but you have to shout..
    You take care..and please let us know how you get on..x
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Welcome catwhittlle & Gsxrick, cat your really going through it at the moment especially with no treatment! Have you had an appointment to see the Gastroenterologist or the foot & Ankle consultant come through yet? I know what you mean about being of a certain age and how you should be feeling full of energy, when I was in my 30's. (Just turned 40 last year!) I agree with Sticky & barbara I would be calling my G.P or Consultant and asking for an appointment A.S.A.P because of the amount of pain I'm in. Hope you can arrange something soon.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Welcome, and don't worry about unloading, it's a safe space to do so, and folks here understand. I wonder if your hospital Patients Liaison department could help you? It might be worth a phone call explaining how much you're struggling, and of course a call to the rheumy nurses might help expedite the next stage.

    Keep talking it really does help.

    Deb x
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    Hello again. How are you today?
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Its alarming to hear you have been waiting so long to see another doctor. I would contact your gp/help line like the others have suggested. Each time I have had problems in the passed to do with my medication I have usually been seen the same week or first thing the following week, there is always a way to fast track patients to be seen sooner if its something urgent, and in your case I would say it is.

    And just a bit of advice on the meth, it might not all be bad news. I have had problems where it has caused my liver function to go bad, I still take it but at a lower dose. My situation is slightly different as I take it with a biological drug so I expect the doses are different. But it might be something your doctor will look at.

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