Hello

Brutha
Brutha Member Posts: 51
edited 20. Apr 2015, 10:35 in Say Hello Archive
Hello to you all.

I have been told I have sero-negative inflammatory arthritis by a rheumatologist, after he sent me for ultrasounds on my left hand and shoulder. I have been told to to take sulfasalazine, ibuprofen and a wide range of vitamins but most importantly vitamin D.

I am a 39 year old gas safe registered boiler repair man. quite a physical job. Some days I struggle to do my job without pain that can make me call out involuntarily when I move into the positions I need to for my work. furthermore I am currently in a bad period where my hands look like I have been fighting and I am so quickly worn out (not to mention the moderate ain in my ankles, knees, hip, neck, shoulders, elbow and hands). I click in my knee every step when i walk up(or down)stairs, my left shoulder grinds when i move it (every time),

Even to me reading that back it seems quite simple that the doctor is right.

Why then do I refuse to believe it? Against all logic? Against the rheumatologist and GPS diagnosis? Against all the clicks, scrapes, grinds and redness of my traitorous joints? All it takes is one good morning at work and then I believe, and i mean really believe, that all the arthritis stuff is all in my head.

Can anyone give me some advice please?

Thanks,
Mark

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums Mark from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes
    Mod Yx
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    Hello Mark and welcome. I'm sorry you had to find us and even sorrier that you do, unfortunately, seem to be in the right place. Why do you struggle to believe that? Because the good days give you the opportunity to deny what you and the docs really know. 1t's a very natural reaction.

    Acceptance, as one of the threads (with that name) at the top of the Living With Arthritis forum, is a long, difficult and ongoing process. Arthritis can take away many choices for us and force us into directions we'd rather not take. We have to concede many battles in order to win the war. You'll get there :)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 26,869
    edited 30. Nov -1, 00:00
    Hi Mark

    I'm not in the slightest bit surprised that you convince yourself this isn't happening despite clear evidence that it is!!

    I did and still do at times exactly the same thing.

    I also do it as regards the fact that my youngest daughter has leukaemia, which she has had (really??? MY daughter???), for 16 months now!.

    In my opinion we gradually, over time, accept more and more that this 'unbelievable' thing is happening to us. Actually us. Not someone else.

    If I were you I wouldn't be too hard on yourself....be good and take your medication.....rest when you need to....exercise carefully when you can.....eat as well as you can.

    In time you will get there.

    Oh and talking helps - us lot definitely and getting reliably informed too, which means sites like this :)

    Take care

    Toni x
    Love

    Toni xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry that you have had to find us. I have a rugby-playing mate who is a self-employed kitchen and bathroom fitter. He has psoriatic arthritis (one of the inflammatory auto-immune conditions) and his is very well-controlled by the sulphasalazine and the occasional anti-inflammatory. He does experience the odd harder day here and there and when they crop up he wears some form of fingerless gloves to help support his fingers.

    I have the same kind of arthritis but unlike him I have done it properly. :wink: I am nineteen years in now and also have osteoarthritis too, I can no longer remember being pain-free which is a bonus because it stopped me harking back to what used to be. I remember hearing a grieving father talking about the loss of his child, he said something along the lines of 'This is what happens to other people but now I am the one of those people.'

    Due to a life-time of auto-immune troubles I wasn't surprised when my arthritis rocked up but it was a shock. If you have been used to good health, however, this must be one ghastly shock. You cannot expect to get to grips with it in one breath especially if you are experiencing better days. This is not in your head, it is, alas, in your joints. The most unwelcome of lodgers has moved in and cannot be evicted but its activities might be subdued by the meds. I hope so. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello and welcome. Adapting to an autoimmune form of arthritis takes time - especially the younger you are. I think at first we go through a phase of denial - if we pretend we don't have it maybe it will go away. Unfortunately this doesn't happen, so we get angry. As we try to get to grips with life with RA, anxiety about the future creeps in, alongside the frustrations of trying to find the right meds/combination of meds. Coming to terms with your diagnosis can be a long journey, but there is always light at the end of the tunnel - and nowadays there are more meds, better treatment plans etc.

    Acceptance will come as you learn to deal with the ups & downs of RA, so do keep posting and we'll do our best to support you.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Welcome to the creaky community! This is a lot for you to come to terms with so it's not surprising you are finding it hard. It's not just the practical - coping with meds, work, fatigue etc, but the emotional. There can be resentment at the body 'letting you down', and fear of the future - how the disease will progress and what the implications are for your employment.
    Keep posting(try the Living with arthritis board) and you'll get lots of support when you need it from folks who understand what you're dealing with - with the best will in the world friends and family struggle to do so unless they have a similar condition. There are laughs and pleasure to be had, but in different ways from pre-arthritis times.
  • Brutha
    Brutha Member Posts: 51
    edited 30. Nov -1, 00:00
    Thank you for your responses.

    I guess a bit more research Is needed. Rheumatologist (I saw yesterday/Saturday) is give me hydro chloroquine (spelling?) to complement the sulfasalazine and more steroids to get it under control and then multiple drugs can be managed down.

    These 5 days have been properly rubbish. The worst it's been for the longest time. Which kind of rams the truth home. Hopefully be able to convince myself when (if) I next have a good day. I took the other half to doc yesterday, so she can help me believe it should that situation arise.

    I think I need to talk about my condition in a possessive sense to help my realisation, so it will be not "arthritis" I am referring to, but "my arthritis". It seems everyone's is similar yet different. Anyhow, I am off to the other boards, thanks again for your time, see you in the other sections hopefully.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I suspect you mean hydroxychloraquine (sp?) also known on here as hydroxy. I've heard of this but never taken it. Sulph plus a supporting med is a common starting combination, sulph is one of the DMARDs (disease modifying anti-rheumatic drug) whereas hydroxy is one of the NSAIDs (non-steroidal anti-inflammatory drug).

    Prednisalone (tablet steroid) is one of my favourite meds, it doesn't address the underlying issue but it can make you feel so much better in yourself. It has a role to play in bringing things under control but it is not a long-term option for treatment because it brings its own troubles.

    Everyone faces an unknown future but we also face an uncertain one. The disease will move at a pace of its choosing, we all have the same labels on here but we are all affected in different ways. The diseases are as unique as us. Sometimes we react well to the meds and they help, sometimes we don't - it can take a little while to find the right combination of drugs to help. Hopefully you have been diagnosed quite early on - to my way of thinking this will give you a head-start in getting on better with things. I had five years without any medication because no-one recognised what was causing my left knee to swell and swell and swell. By the time I began the sulph it was too little too late. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Brutha
    Brutha Member Posts: 51
    edited 30. Nov -1, 00:00
    Thank you for the response. The prednisone is by injection in a common area. It is great and gives me my shoulders back! First time it worked for 6 weeks. Same dose now does me for 3 weeks.

    Posting on the forum was recommended by a lady on the helpline I rang last week. You all sharing and welcoming me has been most appreciated. It helps to not feel isolated. I wish I could add something for you. But I cant.

    I believe I have caught it early. Auto immune is in the family. MS and fibromyalgia, this and the weird restrictions I was feeling then ( And now). persuaded me to see a rheumatologist privately. This doc has got my gp to refer me back to him on the NHS. So no more Saturday appointments but no more massive expense!

    Not sure why the colour of my post keeps changing as I type. More stuff to get used to I guess! I am back at work. Damn iPhone doing its random sabotage I suppose!

    Mark
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Ah, that's a depo-medrone, I've had those and got precisely nowhere with them. :lol:

    I've had another thought: you must let your GP know about this new meds regimen because you now qualify for a free 'flu jab in the autumn. I've had one for years thanks to my asthma and now my auto-immune arthritis and have had no trouble with them - or any 'flu. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben