to the back teeth!

its been a long time since my last post,18 mths on from diagnosis,still on 15mg mtx,meloxican,400mg tramadol,800mg paracetamol,oh allopurinol because i suffer from gout,i had a nervous breakdown about 3mths ago on crutches if walking involves a supermarket size walk,anti depressants,oral steroids nothing is stopping the constant pain even the tramadol is seeming less and less effective,atos are coming monday,stomach bug today lots of pain somedays i am so fatigued i have no energy,rheumy appointment week on tuesday,brave face time which i know doesn't do me any good but i was bought up (tears now so very low) "not be any trouble" i have little or no self confidence anymore.feel stupid with wrist supports and crutches,been on the sick for 3 months and terrified as i have admitted to myself i can no longer work at my current job(standing 10 hours a day)though i havent discussed this with my wife as i dont want to let us down.......i 100% mean this if the dr offered to have my legs off at the knee i would without hesitation take him up on it!!

9 Replies

  • Oh I feel for you as you have so much going on just now.

    When you see your Rheumy next Tuesday tell them how it is for you, don't leave anyting out, forget about putting on a brave face as you cannot continue suffering they way you are.

    It looks like the meds your on are not working as they should and have they considered letting you try something else.

    Have you discussed with you employer about changes at work if you were to return if things get better.

    You have so much going on health wise without thinking about what could happen at work but I understand it is hard.

    Sending you a big hug

    Mary x

  • 15 months have gone by and it sounds like you still havent had a good control over your illness. Thats 15 months too long I think!

    I think I would call the rhuemy helpline and tell them how you are feeling. You sound like you need to have help with your medicines sooner rather than later as you seem still to be in a load of pain , maybe they would consider adding in another DMArd for you or reassessing how you are at the moment.

    It must also be awful struggling at work, can u have a word with your employer or boss about using a seat or getting help at work until you feel better. I got great help form our occupational health department.

    You are not stupid by the way, you just got sick through no fault of your own, and what you need now is help and support. Unfortunately with the illness that means going and asking for it when you are at your lowest point.

    So for me I think ring the rheumies and ask for an emergency review, have a word with your GP for help with your pain and maybe even your understandable low mood. Talk to your boss for help till you get more control over your RA. Phone the NRAS helpline, they have so many good ideas and really helped me through some tough times.

    and keep in touch here, i am really thinking of you and hope things pick up very soon for you Axx

  • This disease wants to hit every fibre of your body not least of all confidence, please do talk to your wife about your feelings regarding your illness, life and work. It will help and she will feel better as I am sure she is as worried about you not talking to her. It will make such a difference with the two of you against this disease, after all the marriage vows say 'sickness and in health'.

    And ditto to all that Allanh has said, good luck and I hope you get sorted out soon. take care. xxx

  • Hi

    When you are experiencing that level of pain the disease & it's affects are awful, including the depression and low self esteem. You must speak to your medical team and have the doseages looked at, with the view to increase them. Also think about a steroid injection, that can really work wonders in the short to medium term.

    Ditto what everyone else says, but tackle one aspect at a time. Once your disease is managed better and you experience less pain the depression, will subside and you can then start to think about how your employers can help you.

    Keep smiling - I've been where you are now, as alot of us have.

    Cyber hugs

    Joanne xx

  • Hi Niall,

    I really feel for you, many of us will recognise this awful scenario. You really do have to get past the 'putting a brave face on it' and needing to not 'make a fuss' - I know it"s how whole generations of us were brought up but at the end of the day the Consultants, GPs etc can't be mind readers. If we say 'I'm fine' then that's what they're going to hear from us. There comes a point where we have to say "I'm desperate, the pain is awful, I don't feel like I can live like this much longer". Saying how it really is doesn't let anyone down, not saying how it really is means that you don't get the help you so badly need:-(

    It took me 2 years to say to my consultant - having taken 30 mins to progress from the car park to the clinic at a snail's pace - "I'm so tired that I could just lie down on the pavement and cry, except there's no point and I wouldn't be able to get up from there". And he really got it, I moved onto a different DMARD, got something to help with getting a better night's sleep, better pain relief, had some scans, had the DAS 28 score re-done etc etc.

    I agree about phoning the NRAS Helpline - that's what it's there for, so you don't feel alone and frightened about the future. Keep posting and get the support that you need, learning to live with this disease is a big adjustment but you can still live a good and meaningful life - and get your next rheumy appt brought forward!


    Cece x

  • Niall, What Cece is saying is spot on ! I went through that scenario for way too many years. Going to the Rhuemy and saying, essentially, everything is pretty good. I was still working at that time and I was afraid he would report on me to the PR mgr, that I was too inhibited to continue working. As it was, I now know I was working way too many years longer than I should have. It all came to a head one day at work when my foot swelled so bad I had to take my shoe off. It was so painful and very red! They took me down to the Emergency Room- I worked in the hospital Lab-was admitted with possible Myelitis, and I never went back. It was later id'd as Psoriatic Arthritis. Had to file for Disability. So, being brave, or putting on a brave face just isn't worth it.

    I do live a good and meaningful life, I have many people who depend on me to help them manage their disabilities and handicaps. I have a very loving family of 4 sons and their families, life is full. I have hobbies. As long as I take all the drugs I must, I can deal with my life and enjoy it.

    There are days, sometimes more than one or two at a time, when I realize I must take a mini-vacation, within the house and gardens, get rested, and then go back to activities again. I could write alot more of how to manage, and perhaps I will post such a thing in th near future.

    All the best to you. Please get to your GP, or Consultant, tell them everything you have said here. You will be so glad you did. And let us know how it goes, God bless. Loretxx

  • Have been there so do sympathise. After a year of pain if I was able to walk I would have gone and got a chainsaw and cut off myown legs. Had new rheumy this feb. started on 15mg Meth + 3 Salza + 5mg steroid. Very slight improvement on pain but no walking, Metex has been increased 5mg per month with more improvement. Last 2 months on 30mg, amd now walking almost normally, not too good at standing for more that a minute, and for some parts of the day I forget that I have this diabolical disease. Can turn over in bed and dress myself and I can plan things. Think you need higher doseage. On Friday I find out if inflammation is under control, if not next step is biologics. Good luck and you will get better.

  • thankyou for all your support am now on oramorh which has aided in sleeping,and my pips assessment couldnt have gone better.........FORWARD steps thanks again everyone for the support xxx

  • so confirmed my rheumy appointment yesterday,ring me and cancel it today!!!!!!!

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