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What to do

Posted , 8 users are following.

dean40378
dean40378

Hi I have sero negative inflammatory arthritis,diagnosed in Nov last year I have osteoarthritis as well in my hands and toes diagnosed 2 years ago. I'm confused and don't know what to do about my work I'm of sick at the moment as my hands swell up and were painful

I am a delivery driver and it's very physical job

I have no energy and am thinking of giving up work I have no quality of life at the moment work go to bed at 7.30 every night so tired I still think I can work and keep fighting it but I'm totally worn out

I feel emotional all the time I have a dose of steroids injection in my buttock and was on sulfasalazine 4 a day and now on methotrexate as well will this stop pain and fatigue the occupational therapist said that I should 4 to 5 hours a day max but what can I do I was in the building trade gave that up because osteoarthritis so decided to do driving job but it's wearing me out any thing I do is tiring me out

1 like, 9 replies

9 Replies

  • julielou01
    julielou01 dean40378

    Posted

    I do really sympathise Dean, I have RA and OA, my right knee needs replacing and im not yet 50....Unfortunately, the fatigue is here to stay...but work or not, you will feel tired...sorry...sleep and rest when you can, eat well and take your meds...I still work fulltime,I am a self employed gardener...I have no choice, or my bills dont get paid.. and yes it does hurt, but I work round it...Can you ask your employers to put you in a less taxing position ? Good luck
    • dean40378
      dean40378 julielou01

      Posted

      Thanks for your reply Julie

      I'm on a six month contract finishes in June don't think they will renew it ,

      It's a full on job and there is no chance of lighter duty's, I have insurance s in place but the problem is will they pay up it covers ra and will pay my mortgage off so I'll have to see if not see what other job I can do I'm 51 it's so frustrating my mind says I can do it but body won't thanks again

  • stephen54311
    stephen54311 dean40378

    Posted

    I the same dean but with neck problems (ostio)I now work with my very understanding wife in a small shop after giving up my job with bt (a big pay cut )you will probably afto try numerous drug combo,s until you get the best for you unfortunately this is par for the course up at 6am this morning and am sat here feeling very sleepy in other words dean your not alone it just takes time to get used to it but I promise you will do
  • lyn1951
    lyn1951 dean40378

    Posted

    MTX - does seem to eventually settle down the swelling and inflamation. I am on 35mg once a week, by self injection. Works better than taking tablets, don't overlook the possibility that you are not taking up the MTX though your stomach, it is a known down side of MTX. 

    I also have lost some weight, finally found a dietician that makes it all make sense, I have charts on the fridge of what I should be eating they act as a reminder for me, not that I am suggesting that you are overweight, but I am, battled a weight problem my entire life.

    Also find the less wheat products I eat the less pain I seem to be in, the rheumotologist then tested me when I reported that to see if I was coelieac, NO not that either, but again it seems to help.

    I find as recommended by rheumo that when I take, 6000mg of fish Oil (odorless) a day, it does make a difference, I didn't take those capsules with me over Xmas for a couple of weeks when we went away to a remote area, paid the price for forgetting those capsules, but about 10 days after I arrived home started to feel better again for taking them, also take a good quality multi-vitamin and I find that also seems to help with energy levels, rhemuo says I am wasting my time, but there seems to be something in those that helps, again feel the differnce when I don't take them.

    Work with your rheumo Dr, there are lots of medicines, I have tried most of them, some work wonders, and some have little or no effect, and some for me work wonders, or I am highly allergic, or when my blood is tested they find TB antibodies, and I can't take biologics,  just has to be me, 2% of patients in testing had problems supposed in testing phase of, as in extreme dose of high blood pressure, grrrrr, the arthritis was gone, but can't use a particular brand of tablets. see just finding out what works for you.

  • dean40378
    dean40378

    Posted

    Thanks for your replies I will give medication time to work and keep smiling

    I have now accepted that I have ra which is hard

    But it's difficult when I used to be so active and full on

    Would feel embarrassed if I give up work as people would think I look fine

    But at the moment don't think I could go back to work had my grip test and a 6 year old child has a stronger grip than me my hands are so sore

    Thanks all

    • lyn1951
      lyn1951 dean40378

      Posted

      Dean - I can relate to you with sore hands, I too have a grip problem. Cannot open a bottle of milk, or soft drink bottle, have found gripping things is just a matter of adapt and overcome.

      Have a giant pen for writing, you should see the funny looks I get when I pull it out to sign forms, pen about an inch thick through.

      people fascinated by it, and then when you explain you have no grip they do understand. I sometimes show people that I cannot make a fist, and that completes the explanation, you can see them looking at their own hands and making a fist in comparision, you don't think about it till its missing do you.

      You can also get kitchen impliments through arthritis associaiton's and specialiised retailers with really big thick handles, does make life soooo much easier, I assume you can also get steering wheel padding or modified grips to help also, just a matter of tracking down where to get the transport department approved, look up mobility aids, or arthritis aids, i found some on the net.

  • Light
    Light dean40378

    Posted

    The fatigue is the worst, but it does go once the drugs have taken hold.  So go easy on yourself, allow yourself the rest you need. It won't be forever.
  • Rowbirdie
    Rowbirdie dean40378

    Posted

    Hi Dean

    it s a big thing to get used to the diagnosis of RA and your meds may not have had time to work yet. Also I found the steroid jab made me even more emotional- but it did help the pain.

    But I think your rheumy is being conservative with your RA treatment. In the UK they should now begin with a combination of DMARDS ( eg methotrexate and sulfasalazine together) right from the beginning. If that doesn't work , a biologic can be added. This has worked well for me, though I know everyone s different. 

    Make sure they know how bad things are as doses/ pain relief/ other options  can be tried  eg oral prednisolone in a tapered dose to reduce swelling. I probably contacted my rheumy about every 4 to 6 weeks to say nothing was working at the beginning- so they increased doses and added meds.

    While they re finding what might work- yes the fatigue is huge. I remember coming home from work and going straight to bed.( and I wasn't doing a physical job) It s miserable, so don't be afraid to let friends and family know how things are as it s a very hidden disease that can be isolating. 

    All the best- hopefully meds will kick in shortly.

     

  • heledd77
    heledd77 dean40378

    Posted

    Hi Dean, sorry it's so bad for you right now. It does take a while to come to terms with the diagnosis, you're not alone in feeling that way.

    However I've read your responses and I have to say I think it's misleading and defeatist to say that the fatigue is essentially always going to be like it is - that simply may not be true. It may take time to hit the right medication mix but it can and does happen for many many patients. Agree with looking at fish oils, diet etc too. Good luck and try to stay positive x

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