Hospital again today!

Morning everyone

I was diagnosed finally 3 weeks ago with RA. This was by scanning my hands etc

I have been on every pain med going, currently oramorph!

2 weeks ago I was given steroid injection in my bottom from rheumatologist

Day before yesterday after having been crying in pain, I was put on 30mg or prednisolone.

My hands, kneess and elbows are so much better already

The problem is my shoulders, still this non stop pain

It is like when you have cricked your neck but constant.

This has resulted in me having to turn down an amazing job offer. Just not capable of doing it

After taking the train to London last week, I spent following 2 days in bed

Is there anything anyone thinks I should be asking this afternoon when at hospital?

So very very fed up with pain

This started in September last year,I always think it can't get worse but it does :(

Xx

6 Replies

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  • I'm so sorry you are having such an awful time. Please don't despair the RA drugs can make a huge difference I can assure you. They don't work quickly and it can take a while to get the right amount and combination but when the pain goes away its wonderful and its very possible that normality will return and you will be able to get back to work and life at some point - hopefully not too far away.

    Re your shoulders - I think I would want to know if it is definitely inflammatory or whether its something secondary such as OA or rotar cuff - all of which can come about as well as or because of RA I believe. If the steroids and Oramorph aren't touching it then I would definitely ask to have your shoulders examined with MRI to find out whether this is RA or not and ask about appropriate physiotherapy to help you with it too. Tilda x

  • So sorry to hear this you are having a bad time , though as you found steroids can really help, steroid tablets take up to seven days for full effect and injections up to two days or so,, so more relief is yet to come x

  • Hi sorry you are in pain at the moment but I can relate to the pain in your shoulders because I have pain in my shoulders, it seems to alternate first the left shoulder then the right one, it keeps me awake at night its so painful but only seems to last a day or so then moves to the other shoulder, very strange, I would be interested to know what the hospital say about it. I have an appointment with the physio in a couple of weeks and hope that will help.

    Hope you get some help later with your pain.

    Wendy xx

  • Thank you for your comments. I will ask him about OA etc. The first set of x rays I had showed damage to shoulder, I need to ask more questions today.

    One thing I have learnt today is do NOT Google "Shooting pains in shoulders and arms"!!

    I don't know if everyone is the same but you get your hopes raised so much before your appointment thinking you will get treatment that will do something, only to come away with more waiting and seeing. Then you get the dreadful come down.

    Shame it has got to this point already, I cannot believe how "down in the dumps" it makes you feel. Also so damn useless and incapable of doing the basic of things.... I cannot put my bra on or take it off!! (Have now ended up sleeping in it a few times as I couldn't get it off)! Also even brushing my hair is a problem, let alone washing, drying and straightening it.

    I am so sorry if I am moaning, I know others are worse than me. No one seems to understand how I feel at home,

    I would love someone to just put their arm around me and say , Hey it will be ok... instead I get "Stop exaggerating and just exercise and get your act together" (My kids have been amazing though) ex who is staying here at the moment has not changed!!

    Oh my god!!! Life story coming out here! Thank goodness I am single!!

    xx

  • I have pain in my shoulders and down my arms but x-ray showed it to be oa not ra and i do agree with the attitudes of others, sometimes wish they could have it for a day!!!

  • Evening.

    Well back from a long day with consultant.

    Had ultrasound on my hands again, The RA in hands, feet, knees has improved with steriods. So now I am on these pills Methotrexate 2.5mg ones long term,with blood tests often? Am waiting for full report and actions to be sent to me. I have to take 6 at once once a week for a week, then 8 once a week for a week then going up to 10!! Does that seem right?

    Have looked on internet and he side effects sound dreadful. Any advice if anyone else on this drug.

    So that was the good news the bad news is my shoulders.

    Sadly I have Rotator cuff impingement syndrome in my shoulders also. This is causing all my arm problems. I have photos now of where the bone is now not smooth and round.

    Not a quick fix sadly, Will have pain for a few months. They are going to work on raising my pain threshold. For a start with an oxygen mask at bedtime to make my brain cut off from worrying stopping breathing. Apparently my snoring is down to me having sleep apnea. They need to identify which muscles has knocked my shoulder balls out of sync and try and re strengthen just those ones to realighn my shoulder balls. Cortisone injections into my shoulders at end of April.

    Steriod tablets I am going to be weaned off over next 2 weeks.

    So much to take in and yep feeling really down as I knew I would as knowing I am stuck with this pain is dreadful.

    Anything anyone can advise, suggest etc please don't hesitate to tell me.

    This is a long haul thing I now realise and somehow just have to get my head round it.

    Am now going to have to think about going down the disability route as self employed and at the moment no way can I travel etc.

    Sending hugs to all sufferers

    xx

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