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Bad day :-(

Posted , 2 users are following.

donna82193
donna82193

I have just been diagnosed with RA. Been in a flare since November. Ive had my first app with specialist who gave me a dose of steroids. Ive been feeling a little better since but today I dont know which part if me hurts more and im so tired. Seeing specialist next month.

1 like, 19 replies

19 Replies

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  • jo17130
    jo17130 donna82193

    Posted

    So sorry you've joined the club. The specialist will be able to explain more about what is happening and what they feel the best options are for you. Steroids are a great short term help (just coming to the end of a taper and wishing I could go back on them again straight away!). RA is very confusing and troublesome - as well as being painful, exhausting and everything else. The forum is a good way to make connections, vent and find out stuff but remember your journey will be unique because each one of us has our own version of RA and makes our own choices about which medications or options we follow. Good luck and may you get to remission quickly and easily! 
    • donna82193
      donna82193 jo17130

      Posted

      Hello. Thankyou for your support. May I ask what drugs u are on and how long u have had RA? My specialist seems to be very kind and supportive.My biggest fear are the drugs. X x
    • jo17130
      jo17130 donna82193

      Posted

      I was diagnoised in the summer and put on Metx and hydroxychlorquine sulphate, plus naproxen and paracetamol and codine when I need it. I had an inital course of steroids too. I didn't get on well with Metx by tablets (made me very nauseous) so am off that at the mo and waiting to start Metx injections instead (and just coming to the end of a second course of steriods as a bridge to that). What is it you are scared about with the drugs? They are strong and can have side effects but the aim is to find each of us the ones that work best for us, with fewest side effects. My team have been fab - lots of useful aids and equipment which really helps. And good support to change the way I work too so I can work more flexibly.
    • donna82193
      donna82193 jo17130

      Posted

      The drugs and their scarey side effects. After reading how they damage your liver etc. I have osteoarthritis in the whole of my spine, carpel tunnel in both hands and neuropathy. Im on gabapentin and dihydrocodiene. Ive had all the anti inflammatory drugs due to my spine. I take it u are young too?
    • jo17130
      jo17130 donna82193

      Posted

      middle aged I suppose - 48. I'm hearing impaired and have had surgery and stuff since teens for that so I suppose I'm quite ok with docs and making decisions and stuff. Liver problems from Metx only affect a small percentage of people and thats why they check your blood so often if you are on it, so they'd pick it up real quick if you were having a problem and would try something else. You seem to have already been through the wringer - seems unfair to get RA too!
    • donna82193
      donna82193 jo17130

      Posted

      Im 43. Yes just a bit. My youngest is hearing impaired and has hypermobility so used to seeing her specialist. Ive never been one to see specialist for myself. I can cope with pain most of the time but the fatigue gets to me. I will see specialist with an open mind next month. Fingers crossed I get decent meds to stop this fatigue.

      One question ( sorry ). Does your joint pain move around??

    • jo17130
      jo17130 donna82193

      Posted

      yup - moves around and varies ridiculously day to day (even hour to hour). Its hard to know what a day will be like although evenings tend to be my worst times. Mainly hands (fingers and wrists), and feet (toes and ankles) although occasionally my legs and shoulders have joined in too...
    • donna82193
      donna82193 jo17130

      Posted

      Well at least im not going crazy. There isn't a joint that doesn't hurt today. Partner on late shift and trying to look after two kids ( they help alot ) but still quite young and cook tea is a nightmare. Thankyou for replying. Its kept me going today. X x
    • jo17130
      jo17130 donna82193

      Posted

      I have meals I can cook, and meals I can get the kids to cook - what we have depends on how I am. Today I did a roast dinner - by giving up on roast potatoes (so they were jacket potatoes), using ready peeled carrots, and getting my son to sort the parsnips. I managed to stir the stuffing myself! Only hard bit 'carving' so all I did was hack off the bits we wanted, and the rest will wait until I decide what to do with it next. It was still a roast dinner though!
    • donna82193
      donna82193 jo17130

      Posted

      I did cottage pie which was stupid of me. Couldn't eat it after as felt too ill. Kids loved it though.

      What a nightmare!

    • jo17130
      jo17130 donna82193

      Posted

      Cottage pie??? All that chopping???! Only good thing is that its easy to eat - just need a fork! (Once had to ask for my steak to be precut in a resterant as hands too sore to cut it myself...) No wonder you are in pain - what made you think cottage pie was the thing to go for? Right - next time jacket potatoes, boiled whole carrots and mince - DIY cottage pie! They can sort it on the plate!
    • jo17130
      jo17130

      Posted

      Oh and get in frozen pre chopped onions, peppers, garlic, mushrooms etc - absolute godsend on painful days - means I can still do a stirfry!
    • donna82193
      donna82193 jo17130

      Posted

      I know. Im crazy and sending my other half crazy lol. Im still talking about decorating the lounge. I can hardly shower myself sometimes lol. Im totally in denial and I know that. Off work at minute and still hoping I will go back soon. So so very tired.
    • jo17130
      jo17130 donna82193

      Posted

      The steroids should help soon - but just don't try and do too much. Have you heard of the 'spoons of sugar' thing as a way of thinking about energy? It really helped me (ie if I am knackered its a 5 spoons day - how do I want to use those spoons... so today making my 'roast' was a key thing for me and everything else has been left... Get good at delegating - you can plan the decorating, but don't do it yourself! Just oversee it maybe? And get a stool for in the shower, that can help. I do a day a week working from bed - skype meetings and typing by speech to text - saves my fingers a bit. Lots of support and options out there, but yeah, first we have to admit its really happening. Good luck x
    • donna82193
      donna82193 jo17130

      Posted

      Your last message states it is being moderated. Not sure what that means.
    • jo17130
      jo17130 donna82193

      Posted

      not sure either! Basically - take it easy, accept it, delegate and you'll have good days aswell as bad days. And the forum is great for bad days to vent!
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