so much pain !!

Hi all this is my first posting, i woke at 2 am and am in so much pain, hit yet by another criss, it's everywhere my right foot booth kneews, both hands and my left shoulder !! can't get out of bed let alone get the kids ready for school, nor go to work !! i get the impression my boss is fed up with me not turning in yet AGAIN......

what i can i do ? any ideas ? i have been on a number of drugs and steriod injections which haven't helped and am waiting for funding for a new drug called TNF self injecting drug anyone on this ? used it? any comments? i feel like am at the end of the road and can't carry on. can i get a copy of my hosp notes ? if so how ? i don't feel i have a great support from my hosp is there anything else i can do to help myself ?

9 Replies

oldestnewest
  • Sarah, you can ask for your hospital recordsre; ypur disease,you might have to pay for it,but i don't think they charge too much.TNF are many drugs and it depends on which one they put you on. xxx

  • sarah

    nice.org.uk/nicemedia/pdf/C...

    Someone stuck this on here some while back its a NICE guide as to how the medical staff should treat sufferers of ra. It may be of use, just in case you want to make sure that you are being treated as you should.

    Can you ask for morphine type pain relief.

    I would ask for your hospital notes, there is no reason why you shouldn't have them. You could compare your treatment to the nice guidelines.

  • hi, thanks for the tips, i have just printed the document out and will have a little read later. i ended up going to see my consultant yesterday for another steriod injection. the third in 4 weeks not good i know but at least it will buy me sometime untill i get the TNF.

  • Oh i enjoyed readin that and think i'll print it out and take it to my doctors when i go!!

  • hi thanks its always good to get other peoples opions !

  • You could probably get it all off your GP then and there if you go in and ask? Mine get written to and I learned on here that I can just ask him for copies of letters and results and he prints it off for nothing. Maybe different for you but I think all consultants write to the GP don't they. Really hope you get the anti-tnf funded and can start soon - hopefully it will make a huge difference.If you feel so awful you should tell your GP about it at the same time and he or she might be able to give you something much stronger as pain relief until they decide what is next for you. Hoping things improve fast for you. Tilda xx

  • ok, great thanks for the advice am feeling much better today that's the magic of the steriod injection ........

  • Hi Sarah

    I'm glad to hear the steroid jab has given you some relief. It looks as if you've had some good info from the folk on here already. In terms of the anti-TNF drugs, there are 5 different types and I'm sure you'd be able to find someone here on each one to discuss things further when you find out which one they are considering for you.

    In the meantime we have a booklet about all of the biologics drugs (of which anti-TNFs are just one type) which you might find helpful and can be downloaded from our website: nras.org.uk/help_for_you/pu...

    As for self-help you might find it useful to have a look at the 'lifestyle' section of our website: nras.org.uk/about_rheumatoi...

    Things like having a healthy, balanced diet, taking regular exercise and getting a good night's sleep can all be beneficial when tackling RA.

    I hope you get some news on the funding for your TNF soon.

    Kind regards

    Sarah Kate

    NRAS

  • Hi Sarah- Kate, thank you so much you are a star i didn't even realise there were five different types of Ant TNF and will have to ask my consultant which one they are planning on giving me. I have been granted the funding now have to jump through hoops chest X-Rays lung function tests etc and if all clear , i believe a home care team come to my home and show me how to self inject. So i believe it will be a few more months before it all comes together.

    I have to say this site is amazing and everyone is so helpful . I can't believe i have only just discovered this site/sites !!

    To think i have suffered the last 3 years all alone but no more!! A really really big thank you to all those who have given and shown me there support in my time of need.

    I shall never be without my new found friends. hope you all have a good weekend.

    Sarah x

You may also like...