I am 62 female newly diagnosed with pmr,

Posted , 16 users are following.

Hi,

So new to forums and pmr.

Newly diagnosed after 18mths of pain symptoms etc.

I feel worried angry and fed up is this normal.

Frustrated that I can do so little and I may not be able to work again.

Is anyone out there feeling the same ?

J

1 like, 76 replies

76 Replies

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  • Posted

    Hi Julia,

    I too am newly diagnosed and first starting to grasp the extent of things.  Would be abnormal not to react the way you are. 

    • Posted

      Hi,

      Thank you for you're quick response,

      I have thought I was going quite mad.

      Just can't get my head round, doing things slowly. and some days not doing anything at all.

      Hope you are well, and you feel better soon.

      Julia

    • Posted

      The secret is to remember to stop before you are fatigued - which will be much earlier than it used to be.  But the nice thing is, after a rest you can go back and gently pick away at a few more gentle activities.  So you will still be able to do quite a bit - just take time to smell the roses you are planting, so to speak!
    • Posted

      Hi,

      Bless you,

      As a keen gardener not necessarily a good one, I don't stop and smell the roses, just bulldoze ahead, now I have think of the consequences.

      Don't like it, pmr, but guess none of us do.

      Hope you are well, enjoy the sunshine.

      Julia

    • Posted

      It's difficult to change habits but it can be done and I have found it has paid dividends. I felt lazy and guilty at first but I was determined to rest enough and remove as much stress from my life as possible. A year down the line I can hardly believe how much I can do now. My energy levels are well enough up to be able to garden, do housework 😢which I don't enjoy but for which I am now able and many other activities which I couldn't contemplate last year. Just give in gracefully, it gets better. 
    • Posted

      In case people haven't seen this thread here is a link to provide info on pacing

      https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

      The ME booklet mentions somewhere about looking on fatigue as if it were a battery. If you let your phone battery run down to totally empty it will take a long time to recharge. If you use it and then top it up, each time it will be just a short time you are without the phone and there will be a bit of battery for an emergency. It is also better for the battery in modern phones! 

      Giving in gracefully as Silner puts it, or acceptance of the new situation, is an essential part of living well with a chronic illness.

      In addition to the link above, you could also google The Spoon Theory by Christina Miseriando, a modern-day parable of living with chronic illness. Learn to manage your spoons so you aren't left to lick the bowl in the afternoon and evening!

      Another resource I found very useful in the early days is a blog called Despite Lupus by Sara Gorman. Like all autoimmune illnesses, fatigue is a big part of lupus and Sara waxes lyrical on the importance of rest. With a daily midday rest, she is able to live a relatively normal life and run a business and much of her home, deal with 2 daughters and still have some left-over to do patient advocacy. But if she misses that rest she suffers later - and if she misses it for more than a day or two she runs the risk of a flare. It is a good read, even though it will take a bit longer than the Spoons Theory.

    • Posted

      Eileen, I read every word of the thread about pacing with chronic illness.

      It is so true with ME and also PMR.

      With pacing --like taking short naps/rest times ---- I can make it through a day without feeling exhausted and in pain the next day.

      THANK YOU for the information.  Erika

       

  • Posted

    I think most of us 'out there' feel the same, or have felt the same, with PMR it's pretty well universal.

    I began feeling more in control when I realized that all the energy I had wasted on the negative emotions could have been used better by focussing on the things I could do.

    I like to work with my hands, crochet, knit, embroidery, but far out in front is that I am a reader.  I will be eternally grateful that my vision even now, is unimpaired.  I also love to garden, which nowadays is just pottering around outside, with the occasional break to sit and watch the birds and sometimes photograph the more unusual activities!

    PMR can be a hard taskmaster left to itself.  Much improvement can be made once you feel you are in control.

    • Posted

      Hi.

      Such wise words, which I will certainly

      remember.

      My annoyance is I can't do what I always have, perhaps if I organise my thinking to what I can do I won't feel so miserable.

      There are many people worse off, just need to focus on the positive and "get a grip" as they say.

      Hope you are well.

      Julia

    • Posted

      Those are very true words.  I've been learning to treat my body with gratitude and not focus diappointment or disappoinment on it.  I've felt for a while that pmr, once controlled, can even turn out to be a gift, because it gives those of us who've been the doers and shakers so often the opportunity to take time to appreciate the wonderful world we've been given the privilege to live in.
  • Posted

    Hi Julia,I was diagnosed 45 and am now 58. Medication keeps it under control. From long experience the thing not to do is go he'll for leather on a good day as it will bite you in the bum (so to speak)the following day.Hard to pace things so plenty of rest-easier said than done;even now I can overdo stuff but normally the next day I mentally kick myself.Good luck with your journey. The other day Eileen posted a link to a pacing off file-was for ME but equally applies to PMR

  • Posted

    Welcome to the community Julia. I'd say that most of us felt that way. Being a fit and sporty 58 yo to feeling 90 within months was a shock to say the least. Felt like I was going mad until I was diagnosed and put on Pred. Luckily I found this site straight away and can honestly say that it has taken all my fears away. I feel in control of my recovery now and accept that it will take as long as it takes. 

    Explore this site and read everything. I've not missed a day on here and always get something new to learn.

    Ron.

    • Posted

      Hi Ron,

      Thank you for taking the time to reply.

      I have to say I have had a few replies and feel better already.

      Apologies to all, I was sitting in the garden feeling sorry for myself and decided to register on here, I am so glad I did.

      As you say it takes as long as it takes.

      Patience isn't my strong point, but will try.

      Hope you are well.

      Julia

    • Posted

      Never feel you need to apologise to us - we have all been there and know exactly what you are going through. We are here for you to come and rant, scream, sulk, whatever you need at the time. We've all done it at some point.
    • Posted

      I am feeling like crying and ranting today myself.  You know how well I've been doing - progress outlined on health unlocked.  Well, it turns out that my long ago diagnosis of sarcoidosis is not as irrelevant as I thought, as it appears I do not metabolise Vitamin D properly and am now approaching a toxic level.  Feel rather as though my new carpet has been tugged out from under me because somehow this affects what happens to calcium in the body....  eek
    • Posted

      Thank you so much,

      I might moan a bit, but will try to be more positive, can't help but be up beat on this site.

      Registration on here the best thing I have done this week.

      Enjoy the sunshine.

      Julia

    • Posted

      I came upon this site in the middle of a sleepless night about two months after my diagnosis, and felt I had fallen among friends. 💕🌷🎶
    • Posted

      A very good reason to have vit D levels checked occasionally!

      I don't remember you mentioning this before though I'm sure you have. The Mayo article says it interferes with calcium metabolism but doesn't mention vit D in that context. How intriguing. So no more vit D?

    • Posted

      I seem to have posted this a few times over the past couple of days, but maybe not in this forum, so forgive me if it's repetitive.  \when i was in my thirties I was diagnosed (through biopsy) with sarcoidosis.  Being entirely non-symptomatic, other than the enlarged lymph node which was removed, I never thought much about it afterwards.  More recent x-rays showed "signs of old granulamatous disease" which even now I wouldn't have known about had not I been given a copy of the x-ray report.  Apparently these granulomas are responsible for converting inactive Vitamin D to the active form, thus completely negating the body's normal balancing mechanism.  It's so disheartening to think that much of what I've been doing the last few months has probably been more harmful than otherwise.  One thing that happens is calcium levels can rise in either or both urine and blood, which I guess is the interference with calcium metabolism; effects of sarcoidosis include bone thinning and anemia, so it looks like I may be a textbook case, but how could one ever find out, except accidently, like I did?

      So for now I'll even have to stay out of the sun.  cry

       

    • Posted

      I've just sent you a link. As I understood it, it doesn't seem to quite match what you've just said - sarcoidosis is usually associated with vit d deficiency. It would be interesting to know what your calcium level was pre-pred - pred will correct hypercalcaemia they note.

      But if it is a historical diagnosis, then it is probably as much to blame for your low bone density as the pred for PMR although the pred has made things worse.

    • Posted

      the granulomas which can be associated with sarcoidosis (and I have these in my chest) convert inactive vitamin D to the active form - and of course I've been taking lots of vitamin D although not an inordinate amount, for several months now....

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