Good visit to doctor

Just thought I would post a positive story. I had a doctors appointment this morning to get the results of my routine blood test. I told her the pain was ok but tiredness increasing. She told me not to reduce too quickly (I'm down to 6mg) and if the pain increases at all, to go back up to the dose I was before the pain became worse.

 Sounds like  she's been on this site!

18 Replies

  • That sounds good! 

    If you're anything like me, the tiredness is likely to be down to lazy adrenal glands. Mine took ages to get going - the little blighters! But I think they've suddenly realised they need to do something. So good luck with yours. 

  • Agree with DL - sounds like sleepy adrenals and sticking where you are for a few months sounds like a plan. You're just into the "they have to do something again" sort of range and a graded return to work is always kinder.

    That's your GP I take it? If so - don't lose her...

  • That's exactly where I am too.  Tapered down meticulously to 6-ish mgpd from a heady, initial 30 mgpd when diagnosed12 months ago, and hitting the wall of deathly fatigue as well as slightly elevated pain.  The same happened at around the 10mgpd threshold a few months ago, and it's helpful to know that it's likely to be the adrenals.. and how to manage them. 

    The funny thing is, when I'm on my feet 'treading the boards' as a freelance trainer / conference speaker, I don't notice any symptoms: and, if anything, feel quite energised - I enjoy my work (even if demanding at times), and I'm sure this is a positive motivator.  But the symptoms do tend to catch up with me on my days off. 

    What was that about pacing ourselves..?!  'Could do Better..'   

    Thanks all :-)

  • Which sounds as if your adrenals are working when stimulated enough. On your days off you aren't getting the buzz and the spikes. 

    Easy answer - don't take days off...

  • Wow, PMRpro, this is a revelation, are you serious?! 

    I worked 4, 12-hour days in a row earlier this month (the first time in ages) and have to say that I didn't feel particularly 'wiped-out': up at 6 a.m. with not too much pain or stiffness, focused, and bouncing around with large audiences by 8-ish (public courses, high-energy emotionally and intellectually).  Conversely, on days-off, often dragging myself out of bed at 9 ish or later, feeling awful and taking all day to wake up.  Not 'Action Man' as I know him.. :-(.  

    It's strange: throughout this I've always had the gut feeling that an appropriate amount of stimulation / emotional 'load' of the right kind (!) is, on balance, more healthy in coping psychologically and physiologically with PMR / the steroid process than erring on the side of being (over?) cautious and basically 'giving-up' on yourself and the very activities in life that give you a (q) 'buzz'. 

    So, there could be a psychosomatic element (even if slight) to this after all..?  Now I AM excited..! :-)

  • It was a bit tongue in cheek - but there is some biology behind it!

    It is certainly the case that if you are used to being up and about early, that lying in bed doesn't do you any favours - and that is at any age or any state of health. Mind you - are you sure you weren't just feeling knackered??????

    I don't think it is psychosomatic - it is perfectly physiological.

  • Thought so ;-)

    Yes, probably catch-up after being on an adrenalin 'high' for a few days?  All the same, it's helping me to make sense of things in the physiological equation, especially re. pacing myself. 

    Thanks as always for your insights :-)

  • Yes, it certainly seemed to apply to me this weekend. A family get together with second daughter over from Norway was planned in London and the schedule sounded rather daunting to me, used to my slow paced life by the sea. I had not counted on the train services to London being as disastrously disrupted as they were - busing for 45 minutes to Brighton where a signal failure had stopped all London trains. When I eventually arrived - 2 hours late- I would have expected to feel exhausted but no, I was just pleased to see everyone and stayed up until 2 am(!) time unknown in my usual schedule. No doubt copious quantities of champagne helped but next morning I was bouncing around the hotel with minimal stiffness and pain and managed a walk round old London haunts with my daughters before tackling the (equally awful) return journey.

    I think the message is keep going, keep doing what you enjoy  and what stimulates you and if you do feel really rough, then rest.

  • Ah - now what about a clinical trial to see if bubbly is a management option for PMR? Double blind crossover - no problem: Sekt and prosecco is no problem here, Cava and champers in the UK I imagine...

    Always leaves me feeling better...

  • I'd be happy to sign up for that.  Wonder where we'd get the funding?

  • Oh well done!  As the others have said, tiredness at these low levels is almost to be expected.  I hit that wall at 7 mg and it took a bit of time to get tapering again.  Now I continue with the DSNS method, but go down by .5 mg at a time, and after a few days of tiredness seem to pick up steam again.  Mind you, I'm lucky that my days are pretty much my own.  I do get up early, try to have my longest walk of the day early, so if I flag at least I've had decent exercise.  Interesting about the positive stress of interesting activity helping to stimulate adrenals.  Quite a balancing act we are expected to perform!

  • Thanks HeronNS, we seem to be on a wavelength!

    It's good to see this discussion widening-out to consider the psychological aspects of dealing with PMR / steroid withdrawal process and symptoms in tandem with the physiological / pharmacological ones.  The elusive and largely un-measurable stuff of 'Mind and Body' perhaps?

    For me, at least: a degree of positive expectation and challenge in looking forward again to doing the things we loved to do pre-PMR has to be a part of the process of recovery, if at least therapeutically (i.e. positive expectations of ourselves and the future).  And, surely, this contributes to giving us the emotional / physiological 'buzz' (to quote PMRpro) in regaining our confidence in our abilities to enjoy and lead life to-the-fullest possible - which we often lose in the process of adjusting to and coping with any life-changing illness?

    Right, that's enough philosophising.  The wine's open (dry, French red) and I'm looking forward to a good night's sleep and a better day tomorrow.  'On, and Forwards'..

    Keep positive all!  ;-)


  • I think a lot of it is in the mind, or at least responds to our thoughts and emotions.  It doesn't make illness any less "real" but recognising this gives us another strategy for managing and hopefully improving our lives.  I think some people on either this forum or Patient have mentioned how meditation has helped them, for example.  Or finding a task or a craft/art which is not hard on aging bones and muscles but gives pleasure and a sense of accomplishment.   For me the relief of pain afforded by prednisone was so complete I felt like I'd been born anew!  The journey since, learning how to wrestle with Pred, has been interesting and, dare I say it, good for me.

  • Well put, HeronNS!

  • Yes - just caught up with this post, and I do agree with what Mark says. I have posted before in the links between mind and body. Amongst other things, I treat myself to Shiatsu every month or so, and I seriously believe that has helped me too.

    You've done well Mark to get to 6mg in about a year. I , too, started at 30mg at the beginning of 2015, and am reducing to 7mg today. Have taken lots of time to taper since I got quite quickly to 10mg by June 2015. Not so active as you though as I am retired, and take a rest every afternoon! However, going out bellringing, or playing racquet ball in the evenings does wonders for morale, and no harm, seemingly, to the PMR or pred side effects.

  • Thanks Charlie, there must be something in the mind / body equation, even if it can't be measured or proved?

    As for my progress: well, it's been a bit of a helter-skelter at times, the main frustration being a kind of deathly fatigue when crossing lower thresholds of the preds (in my case at 10, and then 7 mgpd, where small increments of reduction are more critical) and / or after overdoing it.  Sounds like you're at this point too?

    For better or (sometimes!) worse, I have a bit of a stubborn / defiant streak in me that often pushes the boundaries and challenges orthodoxy.  With pred reduction I've stuck doggedly to my Escalator plan (similar principle to DSNS) even when getting push-back from the withdrawal symptoms or flares.  And, like you, I'm sure that doing the things I enjoy helps me to deal with this even if I can't control what's going on physiologically.  As you suggest, morale must have some influence in coping: although I also agree with PMRpro in that we should accept (rather than give in to) this illness.  It's all about balance... 

    So, 'on with the show' and I look forward to comparing notes as time goes on.

    Best regards

    Mark :-)

  • I have often posted in the past about "Acceptance" and used to get into rotten trouble from a couple of ladies (not on this forum btw) for encouraging "giving in" to PMR.

    No - not giving in, but accepting that this is where you are at present and there are some limitations releases a great deal of energy to devote to doing the things you enjoy or must do.  Charlie1boy hits the nail on the head for many people: if you rest BEFORE you are exhausted then you get more out of the day overall. Instead of losing everything after possibly 4 or 5 o'clock, an hour's rest in the early afternoon sets you up for a full evening - probably a gain of 4 or 5 hours. And you are also much more tolerable to your companions!

  • Not related to PMR but related to a good doctor visit.   On Wednesday a friend drove me 3 hours to a pain clinic appointment which I had waited a year for.  The doctor wad amazing.   He has chronic pain himself and an autoimmune disease to boot so knows cirst hand about both.  He never once indicated he didn't believe I was in oain and came up with a plan which he will send to my GP who has been a bit reluctant to give me enough pain congrol.  Thursday I was so tired I was pretty well unconscious all day lol. He is going to follow up with me and if this first plan doesn't work he will work on another.

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