Four weeks on and still stuck in my bed

Hi there.

l was with diagnosed with Fibromyalgia 10 years ago and RA roughly about 3 years ago. I now take salfasalazine after side effects the moment Methotrexate but appears to have working.

Four weeks ago I went to see Rhematholgist as knees , ankles, wrist and fingers were painful and swollen. I was told salfa not working and now need to go on ENTs. (Not sure if I have these letters in right order) At the moment I haven't heard anything on when I will start these.

I am in so much pain so haven't left the house in 4 weeks. Doctor prescribed steriod jab,,Prednisolone, tramulief and Naproxen but I am still in agony.

I am so fed up with this conditions I really dont know what to do.

The only relief is the help I am receiving from reablement team twice a day. At the moment I am unable go downstairs so in bed all day.

Waiting for my bathroom to be done and stairlift since March 2014. Looking forward to getting these as it will make mr more independent.

Sorry for the rant but feeling really done in. Here's to a better day.


8 Replies

  • Sorry you are havin such a bad time. I would contact the doctor and let them know you are still in extreme pain. I know mtx can take up to three months to work but it's intolerable to be this sore for so long. I would ring them and ask them to come see you at home , or you may even need care in a hospital to get regular pain relief, physio and care. Good luck and push so they take you seriously. X

    They maybe think with the steroid and drugs you are ok if they haven't heard from you, so tell them you are not ok xx

  • I agree with Allanah,ring your doctor and see what they can do do to help you. Hugs.xxxx

  • Hi shazmill

    Poor you! You sound in a dreadful way. Has the steroid helped at all if not maybe your flare now is more fibro than RA. It sounds to me like you need to be in hospital receiving joint injection, physio and hydrotherapy. Unfortunately in this day and age we have to fight for what we need. I agree with Alanah you need to speak to rheumatology straight away. The drugs that you mention are called Anti TNF's. They are the next thing up from the disease modifying drugs like methotrexate, sulphasalazine, hydroxychloroquine and are either a drip or an injection you can give at home. ( or a nurse will come if you are unable). If you look on the NRAS website there's is lots of info explaining anti tnfs. For lots of us they have been amazing.

    Take care

    KiKi x

  • Sorry you are suffering so, its truly horrid being bed ridden and dependent isn't it? You sound very similar to me, except I was diagnosed march 2014 with RA and diagnosed fibro in hospital late October after methotrexate damaged my lungs (also diagnosed asthma/pneumonia/emphysema/copd whilst in hospital) waiting on scan this Wednesday to clarify if ra is in lungs. Its took all this time to get any help at all as needed diagnosis to be entitled to support. I'm on sulfa too now but if no better next rheumy appointment we will arrange anti tnf treatment. Rather miraculously I have just had 3 days with relatively un-swollen ankles (omg I can walk some!) And am hesitantly excited that maybe finally the sulfa is working? Good luck to you x

  • hi. I have called the rhematiod nurse at Southmead Hospital. The response was to take paracetamol alongside tramuliet, prednisolone, Naproxin ,amatripaline and salfalazine.

    Guess i will have to try it see how i get on

    As i am in a flair at the moment the eariest to start new meds would be the end of this month.

  • Thank to all who replied to this post. You guys are so supportive. I will call doctor and rhemy tomorrow. Sending healing thoughts for us all.

  • So sorry Shaz ... all I can add is DO ask your GP to come see you at home and tell him/her how you are in such pain and have very poor immobility with your RA so out of control at the mo. I got told off for venturing to the docs when I could hardly move last year and in a similar state to how you sound at the mo. They will come to you when they know someone is so genuinely unable to get out without hurting themselves. Let's hope you get an appointment with the consultant very soon and they can get you quickly organised for taking an Anti-TNF. Good luck. xx

  • Sending gentle ((hugs))

    Your condition sounds like Hell.

    It's seems your docs are prescribing pain meds and Prednisone but you are still suffering so. I hope they can move you onto the Biologics quickley so you can back to your life, hopefully it's just what you need.

    Your Fibro Im thinking is a huge complication to also have ing RD.

    I don't know much about Fibro but it sounds dreadful.

    I'm not sure if biologics can help at all with not only RD but Fibro too? I sure hope so.

    Please keep hope, most of us have had some very dark days, weeks, months and years. I am hopeful for you with biologic treatments and I hope your docs can push it through quickley.

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