Recently diagnosed ~ but no progress is the pain in my mind

I havnt posted anything for a few weeks ive just felt so down and utterly fed up , the last visit to the RA nurse my das score was 5.46 but i had been on the MTX for 5 weeks and it had been a really horrible 5 weeks i was very sick , the Ra nuse contacted the consultant and i was taken straight of the MTX and had to wait for a hand scan which has come back as from what i can understand no inflamation and no damage but my hands are so painfull . The only meds im on at the moment is pain relief although i am due to see the consultant for the first time since the scan on december 12th .

I cant help feeling that maybe i have been wrongly diagnosed my inflamation level on bloods is slightly raised but thats about it , the pain is mostly my shoulders and hands but i have like painful aches in the knees and the toe joints , i also feel absolutly tired out but im sleeping .

To top this of i get esa it has been changed from incapasity and i have a work related interview with the job centre on the 8th december ans ive been placed in the work related group anyone been to one of these interveiws ? im so worried they will try and send me to work as just geting throught he day is hard enough .

this blog looks like its a major moan im so sorry i know everyone here has similar problems and i do hope everyone is feeling the best that they can feel ..!

sharon...x

11 Replies

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  • Hi Sharon, so sorry you are suffering at present. It may be the MTX doesn't suit you - it doesn't suit everyone I gather. But I am surprised your consultant has not tried anything else only pain killers. Perhaps he will when you see him on the 12th. Had you been taking the MTX tablets all at the same time? I used to space mine out during the day and found that did help a bit with the sickness and nausea but eventually my consultant put me onto the injections which are much better and do lessen the nausea and sickness. I rarely suffer from it now. I was advised to take 400mg of Nurofen (the gel capsules rather than the tablets to protect my stomach) and 1000mg of Paracetemol to deal with pain and it does work. Take after a meal for maximum protection of your tum. This advice came from my Rheumy consultant. I was told to take every 4 hours but found one dose was enough.

    Sometimes it is difficult to diagnose RA immediately. Some of us are fortunate (fortunate?!Ha Ha) in being diagnosed fairly quickly on blood tests and levels of inflammation, others I know have had to wait a long time before definitive tests reveal it is RA. It certainly sounds like RA is brewing up with what you describe about your hands and other pain. It was my hands blowing up to twice their normal size and I couldn't bear them to be touched which first triggered off alarm bells, that and a cyst bursting behind my knee whilst in the USA and the hospital there first flagged up the possibility of RA. Then my bloods were sky high on the inflammatory markers but it still took over 2 months to be diagnosed properly by which time I was in a wheelchair. So I do hope you get some proper information and treatment soon.

    When you go for your interview at the Job Centre, take with you any reports from your GP as to your state of health and reports from consultants etc.

    You can always challenge a work decision. If you have a CAB near you, do go and see them as they are used to this and can help. It may be you are worrying unnecessarily and any work coming your way could be part time or sitting down. Being put in the work queue for interview doesn't necessarily mean you will come off ESA and be forced to go back to work. But in the current climate, jobs are getting harder to find so I don't anticipate they will chuck you onto the jobmarket but might put you onto Job Seekers Allowance rather than ESA. (ESA has replaced Incapacity Benefit).

    Have you applied for Disability Living Allowance at all? Might be worth looking into as well. If you go onto Advice Guide on the Internet, and click on benefits, you will find some very helpful information there. Just put Advice Guide into your search engine and it will come up. (It is the CAB's advice line which is open to the public).

    Hope all goes well. Let us know. LavendarLady x

  • You poor thing das 5.46 is v high disease activity.. so it isnt likely to be a misdiagnosis. I am hoping they will try another medication and possibly some steroids until the new medication kicks in. Tiredness can also occur with RA and the often associated condition of fibromyalgia., mention all the symptons including the tiredness to the consultant. Hope you get sorted soon xx

    Alison x

  • Ps, write everything down that always helps.

  • I agree with everything LL has said. I'm on esa and i haven't been pressured to find a job. I know its very hard for you at the moment,but don't give in it will come right in the end. if you were feeling so down you should have told us and we would have done our best to cheer you up. Thats what we are for to try and cheer each other up and offer advise. I have had plenty of moans on here and there has always been a answer from someone to help me. Please don't suffer in silence any more sharon. ok.

    Take care.

    Sylvi. xx

  • Hi Sharon

    you poor thing. Been there, only recently getting relief finally from meds. I presented with pain in hands, wrists etc. In fact my fingers were bent over like hooks with very little movement in them. I had a nodule on my right wrist also, pain in ankles and toes and of course the kees (I had pain only in 3 joints initially). Since diagnosis I have experienced some pain in shoulder and elbow during flares mainly.

    The first dmard had very little effect - mainly because I was not on if for long, but when I started mtx (see other blogs) in a duo combination, & yes i've been sick and hair loss etc. After wk 3/4, I have noticed some improvement and that contines, I ve just taken wk 7 and the improvements are continueing.

    Thus I do believe you need to give the drugs time to work and of course find the right combintation to suit you. So persevere and hang in there. I know the pain is a B****.

    Just to mention I am on plaquenil + mtx and I am using steroids 10mg to tide me over until mtx kicks in. I do believe I will be steppig down the steroids at chrimbo.

    Can't comment on bloods as I am fairly new myself and don't full understand what is the norm etc. I did have raised inflammation and rf factor though. My das score was 6.6, when they decided to add mtx.

    Anything to do with benefits beth58 is your gal. Beth seems to be very knowledge, so perhaps you could pm her and ask her about esa etc.

    Good luck and cheer up, I am sure the others can help you further on here.

    Take care,

    Sci x

  • Loads of sympathy. This is really the worst time while you're waiting to find a suitable treatment regime. It's bad enough when you're struggling with the pain and trying to get a diagnosis, and then finding that the first treatment regime isn't working for you must be horrid. But it will get better, just hang on in there for a bit longer. Take care. Polly

  • No, it's not all in your mind! That [as Ali says] a high DAS Score - often you have to let one dmard clear from your system before going onto another. Do go and see your gp and get some more effective pain relief - tell him your DAS score etc. Also give him the heads up that you're going for this assessment and get any supportive materials you can from him - a letter confirming your situation?

    As LL says speak to CAB about the assessment and I would also phone the NRAS Helpline for more info specific to RA/Inflammatory Arthritis and this assessment. If at all possible take someone with you to sit in on the interview [they will remember more than you] or simply to be with you and support you.

    The time to come on here and blog is when you're feeling low - as well as when you're having a better time. There's a lot of support here for you - you're not alone with this:-}

    Let us know how you get on,

    Cece x

  • I know what you mean...I feel the same!! I'm on MTX injections now and waiting for them to work!! In the meantime I seem to just moan about how bad things are....which I mustn't do, cos I'm still working and manage from day to day....its just so frustrating and when I think about the future I find it really hard, I'm 35 and don't think its fair that i will spend the rest of my years like this, and probably getting worse!! I was dignosed a year ago, and feel like I've spent all year waiting for a treatment to work, and I'm still here waiting.....on the positive I don't generally suffer any side effects of the MTX - although today I feel so nauseous!! its just like morning sickness!! :-(

    Just wanted to let you know I understand how you feel, most of my scores are quite low so I shouldn't really be that bad should I?? and then I think its in my head....! But when i look at my lumpy joints in my hands and my hot knee I know its not....

    Take good care of yourself and try to keep smiling :-)

    xx

  • Hello

    Just to say I really understand how you are feeling. I am sero

    negative so my bloods do not show up in my bloods. I was diagnosed

    2008 and at this moment still not got the RA in control. I have failed

    of 3 DMARDS and 1 TNF/Humira. Just had 2 infusions of Rituximab

    so waiting that to work.

    My DAS score is 6.7 so very active , so totally understand how you

    are feeling. Like you my hands, feet are the worst closely followed

    by shoulders, elbows nect etc.

    Hang in there, I am having to, but yes it does get you down.

    Chin up

    RAB

  • I too am sero negative which is a nightmare because nothing shows in the blood. I now what you mean about being made to think its all in your head.stay strong and keep pushing for the right meds.take care xxx

  • I have areally high RA factor in my bloods and started with very painful knees and soles of the feet. In Nov i had a diagonoses of inflammatory RA. Dec I started with sulphalazine, and anti inflam and lapris for the stomach...by Boxing day i had swollen hands and fingers and flushing of pain that was awful. I have had 2 steriod injections to date when i really was in a bad way and now the problems have almost left my knees and gone into my shoulders upper arms and hands and in my neck. I am waiting for the results of a chest xray so the specialist can consider metz. I have heard tablets make most people sick so will be asking if i can have infections and just want some relief for the pain, sick of tatking paracet and codiene but even this does not give much relief. The support on the blog is a daily insight into others and their condition and a good source of information and advice I go on it every day... Good luck all .... x

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