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Does anybody with PMR feel stressed and anxious?

Posted , 7 users are following.

caroline98220
caroline98220

Diagnosed four years ago and still struggling with the pred...up and down. at 5mgs at the moment. Feeling very tired and stressed. Does anybody else feel like this?

0 likes, 13 replies

13 Replies

  • EileenH
    EileenH caroline98220

    Posted

    Were you stressed and anxious at higher doses of pred? Given the dose you are at, it might be a good idea to ask your GP if you can have a synacthen adrenal function test to see if your adrenal glands are stating to produce cortisol now you are at a low dose of pred that is below the amount of corticosteroid the body needs to function. If he claims you would have to come off pred to do it - no you don't, the test just has to be interpreted differently and a good endocrinologist can cope with that. 

    The symptoms you complain of could suggest that and it is the first place to start. For some people their body does not settle down and produce the cortisol again as the dose drops. In some cases they never do and they have to remain on a low dose of pred to compensate. I know of at least one person on the forum - but I don't know what her symptoms were that suggested it.

    • caroline98220
      caroline98220 EileenH

      Posted

      Thanks Eileen for your help.i started on 40mgs as my ESR was very high. I was so exhausted then that I could hardly talk or think straight, stress/anxiety took second place to the tiredness. After four years I still get very tired but the anxiety has taken over! I will ask my GP about the adrenal test.
  • pebbles01
    pebbles01 caroline98220

    Posted

    Hi Caroline

    Yes all three I'm afraid. More so when my medication dose was higher but still feel very tired and stressed at times. These are side effects of the Pred.

    After four years and at such a low dose its not very encouraging for those of us that have only just started this journey. I am reducing to 9mg at the moment which isn't easy, but taking it slow.

    My sleep patterns have changed which does not help, so try to rest later in the day after work.

    Keep positive. I hope you feel better soon.

    • caroline98220
      caroline98220 pebbles01

      Posted

      Hi Pebbles, I'm sorry to dishearten you...we are all different, so hopefully you will be off the steroids very soon. 🌈
  • Nefret
    Nefret caroline98220

    Posted

    Eileen, Caroline, it was when I began to describe my tiredness/fatigue as 'lethargy' that my Rheumy sat up and took notice.  He knows me well enough now to ask more and I tried to explain further that it was as if I was trying to move through unset jelly - not the usual tiredness-that-doesn't-go, and getting stressy over it and I'm not really a stressy person. I've never really known why that got through to him, but it did. I was only vaguely aware that such a test could be done (I know someone with Addison's).

    I was on a relatively high dose of Pred at the time (I think 10mg) and the test itself was nothing but tedious, but of course it gave him the expected answer.  I genuinely think there has been a little recovery now after 2 years at 5mg but I'm not going to rock the boat.  We're both quite happy with it and Caroline, take heart.  I'm still here after almost 14 years on Pred.

     

    • caroline98220
      caroline98220 Nefret

      Posted

      Wow! 14 years. I think we were nearly all told after being diagnosed that it will wear away itself in 18 months to 2 years??
  • marytommo
    marytommo caroline98220

    Posted

    Yes, Caroline I do.  I am on 5mgs pred after 1 year.  But I'm thinking maybe with Christmas looming up and visitors for 5 days over the New Year that this could be partly the reason. Today the weather has moved towards winter temperatures and perhaps this has some bearing on the extra acheing in the upperarms and legs, in my case.

     

    • caroline98220
      caroline98220 marytommo

      Posted

      Indeed Christmas can be a busy time with all the extra activity. We will just have to pace ourselves I suppose. The upper arms, especially my left side    can be a problem too Mary.
  • elaine_19679
    elaine_19679 caroline98220

    Posted

    Yes I also feel really stressed and tired. I actually saw my go last night about that and other problems.

    ive never been one to swear, break down in tears, shout and scream, or feel I can't face the day ahead but just lately I do and it's really unnerving. I've lost interest in everything and some days have to force myself to go out.

    what did my GP say? It's the steroids which was not what I wanted to hear.

    i do hope things improve for you .

    Elaine

    • caroline98220
      caroline98220 elaine_19679

      Posted

      Hi Elaine, at least we know from this forum that it's normal to feel stressed and anxious while on the meds. It's great to be in touch with people who understand the situation.
    • EileenH
      EileenH elaine_19679

      Posted

      Actually he isn't entirely correct there - PMR itself can cause all those effects! At the time I thought it was just me being extra bad-tempered because of the pain I had all the time before pred but I would have days where I was just like that - which is how I know it isn't necessarilly from the pred. Even now I get the occasional day where I just feel like jumping up and down and swearing roundly even though the trigger really wasn't as bad as all that! On another forum we did have a long discussion about it a couple of years ago now - and it was surprising how many other people said the same. Now I suspect it is on days where the autoimmune bit is more active - it isn't by any means all the time and I have very little pain but it still happens.
  • elaine_19679
    elaine_19679 caroline98220

    Posted

    Yes you're right, without this forum and the support given things would be far worse,at least we know we're not alone. Good luck

    elaine

  • elaine_19679
    elaine_19679 caroline98220

    Posted

    I have.to say Eileen I'm definitely much worse on my bad days. One of my really bad days last Friday I'd got up exhausted and achy spent a couple of hours taking things into school and checking on mom . On way home I had a phone call from someone I was expecting to see telling me she couldn't make it. What did I do? I started crying so then had to apologise , I felt such a fool.

    So yes it makes perfect sense and as you often say, not everything is down to steroids.

     

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