The end is nigh

Been on Methotrexate now 12 weeks got to say it's the first time I have lost work through this debilitating disease. My hands are like 2 blown up surgical gloves my wrist is like it's been broken, my feet is like I've got a bed of nails on the bottom of them and my back feels like I'm carrying a 400lb weight on it had to go to the doctor to get the strongest pain killer I'm allowed omg you wouldn't let a dog suffer like this I'm at the end of my tether don't feel like I can carry on. I am really trying to stay strong but finding it very difficult

8 Replies

oldestnewest
  • Try and speak to your rheumy helpline they may be able to offer something else as GP's do not know enough about this disease. This disease really can push you and then push you more. Unfortunately there is no easy way to find the right combination of drugs to control this disease without trying one after the other or adding others in. Keep fighting it does take time to get control but you can get there. NRAS have a telephone helpline if you need someone to talk to. Farm

  • Sorry to hear you are so bad. I hope that the Dr sorts something out. Try and speak to your Rheummy nurse or something. This is a hateful disease.

  • Have you not got a Rheumy appointment any time soon Karen? If not I'd ring your nurse helpline. Mine were understanding lately when I told them adding sulfasalazine to MTX wasn't working & I was feeling rough, inflamed & down. I see them next week & intend asking for their advice, there's no point continuing on it. Sounds like either your dose isn't high enough it you need a med review. How have your bloods been, any reduction/increases which would give an idea whether it's doing anything?

    What dose MTX are you on & is it tablets or injections? Please do seek help, you must be feeling miserable but your nurse may think all's well if you've not contacted her. x

  • I saw the nurse 2 weeks ago my hands were really swollen then she just said give the methotrexate time to kick in. My bloods were OK. Vitamin B12 was a bit low so I got some B12 spray from the pharmacy. I am also taking sulfasazeline as well as 2 steroids daily. The doctor has prescribed diclafenic for the inflammation. I must admit I do feel a bit better today just tired through lack of sleep. Thanks for the reply and take care x

  • Apols Karen, I missed your reply. I'm pleased you feel a little better, have you been resting more today, if so that may be why? We've to pay heed to our bodies, sometimes we just need to do as it tells us & rest then it pays us back by turning down the pain dial a little. I've had to do the same over the weekend & now I'm feeling a little better too. As I said I'm on MTX & SSZ but it's not working so I know shouldn't push my body but what did I do?....took the loppers to a massive 30 year old rosemary & paid for it!

    I hope you sleep better tonight then maybe you'll be better still tomorrow. x

  • Thx for the reply. Unfortunately my job is taking is toll on me. I work in a day centre looking after adults with high dependent needs. My manager has been very understanding and had me on lighter duties but for how long this can continue I really don't know. Unfortunately even the lighter duties is very hands on and you are moving and handling adults which some are 20 stone plus it can be very painful especially when my wrists and hands are inflamed. It's very worrying as I really don't want to pack in work but at the moment can't see any way I can carry on doing what I do.

  • Keep going Kaz they will find a way to get your disease under better control- sooner rather than later hopefully. In the mean time stay strong, rest when you need to and know that we are here silently rooting for you.

    All the best

    Ali

  • When I as at the end of my tether 3-4 months ago I put myself on the Paddison program diet. At the time my meds were having no effect, except ruining my insides. This diet may not be for everyone, but I am in a very much better place now, very few meds and very little pain and almost no inflammation - and getting better each day. You can read my story at foodandarthritis.blogspot.c...

You may also like...