I am 62 female newly diagnosed with pmr,

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

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!

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

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. 

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.

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

 

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

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.

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

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.

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....  

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

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. 💕🌷🎶

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?

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.  

 

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.

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....