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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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  • MrsO-UK_Surrey
    MrsO-UK_Surrey Gone_Girl

    Posted

    Gone Girl, if your worsening symptoms have been around for a few days and they have followed a reduction in dose, then there is a chance that they will improve in the next couple of days, and you could take paracetamol for a couple of days to tide you over, provided, of course, that you are someone who is able to take paracetamol.  

    However, if you haven't just reduced your dose, then you are experiencing a flare in the inflammation and the only way you are going to get yourself out of pain is to increase your dose back up.

    This doesn't sound like a one-off bad day, and if it were me, and especially if I was about to go on a trip, I would definitely increase the dose, perhaps just by 3mg at first in the hope it will be sufficient.  In the case of very severe flares, a hike of 5mg is usually recommended, but see how you go on a 3mg increase first.  If you do feel much better, then don't attempt to reduce again as you have travelling ahead.  I hope you do improve so that you can make the most of what I'm sure is special time with your Mum and your sister.

     

  • ptolemy
    ptolemy Gone_Girl

    Posted

    Hi Gone Girl, I really feel for you, as the others say try increasing the pred and see if things improve. You do need to be OK for your trip away. Out of interest why are you taking dihydracodeine? It acts on the central nervous system, is it for something else you have? 
  • Gone_Girl
    Gone_Girl

    Posted

    Thanks folks for your words. I did get diagnosed with PMR ( I have fibro too ) so GP stared me on 15mg pred and that was amazing.

    GP started me on reduction by 2mg but PMR returned so went up to 15mg again. However pain is creeping back on the 15mg. Its not as bad as first time so I imagine this is a flare up.

    Yes my anxiety levels are pretty high as I feel like the all the meds I take are messing with my mind and body.

    Last blood test showed I needed to increase the thyroxine I take.

    Have had thyroid problems for a few years.

    Also I began pregabalin as well as tramadol and dihydrocodeine for fibromyalgia. And citalopram anti-depressant, of course, for my "mood" lol

    What a mess eh?  But I know that there are people who have it worse, and some days I feel great. Maintaining the greatness is hard.

    But thanks everybody for letting me vent my medication-addled spleen xx

    • Mrs.Mac-Canada
      Mrs.Mac-Canada Gone_Girl

      Posted

      Wow, you are really dealing with a lot!  We know that stress definitely has an affect on PMR and it sounds like you're having a pretty stressful time with not feeling well and trying to get ready to go on vacation.  I agree with Mrs O that increasing the pred by 3mg and seeing if you improve is a good first step.  If that doesn't help up another couple of mg.

      Also, take a time out from your busy day and try to find things that help you relax. A nice quiet lounge in the tub, sitting alone with nice music or.go for a short walk and stop for a special coffee or tea.  

      I really hope you will be feeling much better for your trip and certainly hugs from your Mum and sister will be wonderful.

      Hugs, Diana🌸

  • karren61208
    karren61208 Gone_Girl

    Posted

    Dear Gone Girl,

    Sometimes when you are having a bad day, you just need a strategy.

    Maybe a strategy like make a list of the things you need to get done. Prioritize the list and start with number one task and then take a break.

    On the break, think about finding something to make you laugh.  Maybe watch a segment of funny movie. Let's say 30 minutes. They saying laughing is good for what ails you.

    Then go back to the list and try another task. Also make sure the tasks are broken down into small parts so that it is possible for you to get through the fog of pain.

    If you back channel me, I'll be happy to point you to a funny video my husband made based on the joke about the duck who keeps walking into a bar asking for duck food.

    Anyway to overcome pain, you must find another way besides the meds to be distracted. Hope this helps. 

  • Gone_Girl
    Gone_Girl

    Posted

    Hey folks. Yesterday was rubbish and I ended the day finally getting in a semi-comfortable position on the sofa in my pyjamas.

    But I was very cold and hugged a hot water bottle. Woke at 4am shaking and freezing and sweating and that is how today has continued. Had something to eat and drink so I could take meds and fell back to sleep. Woke half hour ago and am still shaking freezing sweating. I am so cold but my pjs are stuck to me.

    Should I take paracetamol to try and regulate my body temperature?

    Is my body reacting badly to increase in pred?

    I am shivering with cold sweats. However, pain has reduced...except in right arm and hip.

    Is shivering + sweating a common side effect?  confused

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Gone_Girl

      Posted

      Oh, Gone Girl, I hope you've got a relaxing day planned after a night like that with lots of catnaps to make up for the lack of sleep.

      Although it is quite common for Pred to cause hot sweats and flushes, it is unusual to cause the feverish situation that you describe.  That fever symptom is something I experienced in the days/nights leading up to my diagnosis, particularly before the GCA diagnosis ad before Pred.

      It is possible that you might be suffering from a viral infection, perhaps flu, in which case paracetamol should help.  If it is all down to PMR inflammation, then you perhaps need  a higher steroid starting dose  to control it - some people need a dose of 20mg particularly if they are overweight.  But I really feel you should get an emergency appointment with your GP today and get checked out as although we can try and help from our various experiences, we aren't medics and therefore it isn't wise for us to just speculate.  If it was me, I would probably both take a dose of paracetamol to see if it helped and see the GP.  Lots of good luck wishes.

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