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having a bad day

Posted , 14 users are following.

Gone_Girl
Gone_Girl

I would just like to share as there is nobody here to talk to.

Having a painful day and unable to get comfortable sitting down or moving around. Had full days pred and dihydrocodeine but seem not to be able to move along.

Frustrated as need to be getting organised for a trip away to see sister and mum. However this is the third day where I have ultimately achieved nothing and am running out of time.

Pain in right arm and shoulder is creeping back, and now pelvis, groin and thighs have decided to join in........ so I am having a moan  eek 

I HATE BEING LIKE THIS

1 like, 22 replies

22 Replies

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  • gillian_25383
    gillian_25383 Gone_Girl

    Posted

    Hi,hope by the time you get this you are at least feeling comfortable.There is nothing worse than a bad day when you cannot find a pain free position (been there done that and got the t-shirt LOL).Have just started methotrexate as had to come off steroids.Am on two tramadol and six paracetamol a day still as told it can take 3-4mths to work (mind hopefully it will be my best Christmas present ever).Painkillers make the pain bearable but I dream of no pain (cannot remember what that is like except when on more than 11mg steroid).Hang on and hopefully your flare up will subside and you will have a nice time with your relatives.
    • gillian_25383
      gillian_25383 Gone_Girl

      Posted

      Methotrexate can be used to enable you to reduce pred dose or on its own if you cannot take steroids.It is taken once a week and I was prescribed it after being sent back to the rheumatologist. Had to have a counselling session before starting and will have to have frequent blood tests. Only just started it so early days
    • tina-uk_cwall
      tina-uk_cwall gillian_25383

      Posted

      Hello gone girl and gillian, preds currently are the only answer! Our condition is an auto immune condition that results in inflammation and the only drug that can reduce inflammation is steriods. 

      Some rheumatologists introduce mtx to patients who have difficulty reducing preds, especially the very high doses and if patients have been on preds for quite some time. Regards, tina

      mtx however, is only a steriod spareant and currently there is little data that supports using it. 

      Some patients who cannot take preds are offered steriods as injections, as I said only steriods are capable of reducing the inflamation and it's the inflamation that causes the pain.

      i have never heard of mtx being used a sole medication in PMR as it's a steriod sparer so if you are not taking steriods what else is it doing?!

      may I ask gillian, are you still in pain?

      also have you tried steriod injections? Hilary, please add your comments to the mix!!! Hilary couldn't take oral preds either and was most Ill with them. She was prescribed steriod injections and is continuing her recovery very well.

    • tina-uk_cwall
      tina-uk_cwall

      Posted

      Oops, regards tina, how did that get there when I put it at the end! Regards, tina
    • gillian_25383
      gillian_25383 tina-uk_cwall

      Posted

      Hi Tina,have had time on steroid injections but they never lasted that long and was supplemented withNSAID's but due to kidney problems can never have them again.Steroids caused a lot of weight gain (not good post heart attack) GP sent me back to rheumatologist who suggested methotrexate (as previous two generations on female side had RA maybe she thinks there might be an element of that involved)

      Will give it ago and if my blood markers improve then at least it will be working.

    • tina-uk_cwall
      tina-uk_cwall gillian_25383

      Posted

      Ah yes gillian, that's always a problem when PMR patients suffer from multiple rheumatoid/arthritic conditions. What pain or flare up is related to what condition.

      mtx is used as standard treatment for RA so hopefully if that sorts out any of the RA pain then hopefully whatever is remaining may be easier for the rheumatologist to sort out.

      the wright problem is a real bummer. Many on this site have successfully lost weight, albeit very slowly, by introducing a low carb diet. As for you, a slow weight reduction would be good because although you have suffered a heart attack and weight loss would be great for your recovery from that, you don't want to lose a lot of weight quickly because that is not good for you either. All the best gillian. I do hope it all works out for you because living with pain is a horrible place to be. Regards, tina

    • paul45653
      paul45653 tina-uk_cwall

      Posted

      Hi Tina.once in a while a sentence posted here hits home. When you said it's hard to sort out what is being caused by what, I immediately knew that was my situation. When you have a dodgy spine most of your life life the GP will put all problems down to spinal arthritis category. At 84 they find a way to save researching anything that does not pop into their heads. Today I have pain from multiple problems and the only sure answer is my hydrocodone source which I have refrained from using. Take care. Paul

    • tina-uk_cwall
      tina-uk_cwall paul45653

      Posted

      Yes paul, multiple sources of pain are a real problem for a PMR sufferer especially if a pain surfaces just at the moment of a flare and/or dr's are keen to put every other medical problem we experience following a PMR diagnosis down the PMR. Lazy.

      i am really lucky in that having played sports all my life I have over the years suffered sports injuries that now I'm 50+ are coming back to haunt me. Also, my PMR pain was very very pain specific. It was a pain I had never experienced before, and don't ever want to suffer again, so it is very easy for me, when I experience pain especially when reducing, for me to say if the pain is withdrawel/flare, or as a result of a past injury.

      i'm also very lucky in that I am no shrinking violet and don't allow dr's to fob me off. If I don't think any symptom is PMR related I expect it to be looked into.

      paul, I assume you live in the USA where hydrocodone seems to be prescribed more so than in any other country. Good luck, regards, tina

    • ptolemy
      ptolemy tina-uk_cwall

      Posted

      Hydrocodone is classified as a Class A drug in UK under the Misuse of Drugs Act and is not available for medical use.
  • pauline36422
    pauline36422 Gone_Girl

    Posted

    oh dear i really feel for you have you recently  reduced pred sounds like your having a flare to me  just up by 1  mg  see what that does otherwise, i am  not knowledgable

    enough to say  anything else   but i am sure   someone will be able  to  help soon x

     

  • constance.de
    constance.de Gone_Girl

    Posted

    We've all been there.  Sometimes one just wants to give up but, believe me 'it does get better, it really does'.  Bad days happen.  Try to find just one or two things you 'can' do.  I spent a lot of time watching TV, in the DAY TIME!! Unheard of!  I also was on my iPad for hours.  I didn't want to move.  I did though.  I got up, wiggled around, walked round the flat, went to the bathroom more than I needed - just 'moved' a bit.

    I'm 3+ years into PMR and pred now.  It's a long time and I still have the odd bad day - even without an illness - who doesn't?

    • constance.de
      constance.de

      Posted

      Meant to add - keep posting.  There is always someone on here to listen/commiserate/help.

      Regards fr C.💐

  • tina-uk_cwall
    tina-uk_cwall Gone_Girl

    Posted

    Hello gone girl, what's going on with you that things are presently so bad.

    firstly, you say you are having a painful day. Does that mean that the rest of the time you are ok?

    secondly, you say that pain is beginning to creep in, so is this something new?

    if I remember you are new to this PMR lark. If i remember right, remind me when you were diagnosed and what your reduction regime has been like and most importantly have you ever experienced relief from the pains and if you did at what dose was this.

    presently I'm thinking that you've recently reduced and you are experiencing either withdrawal or the beginnings of a flare. A flare is a bad enough situation to be in at the best of times but if you are going to be away visiting you'll need to be in as stress free a situation as possible, so you np may have to up your dose ASAP to get a flare back under control if this is what it is.

    also, have you been over working your muscles recently. Our muscles cannot tolerate exercise the way they use to and we will all experience pain if we go over the top without rest.

    do get back to us soon. Regards, tina

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