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
rocketman42 julia85224
Posted
I too am newly diagnosed and first starting to grasp the extent of things. Would be abnormal not to react the way you are.
julia85224 rocketman42
Posted
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
Anhaga julia85224
Posted
julia85224 Anhaga
Posted
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
Silver49 julia85224
Posted
EileenH Silver49
Posted
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.
erika59785 EileenH
Posted
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
Nefret julia85224
Posted
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.
julia85224 Nefret
Posted
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
Anhaga Nefret
Posted
gillian_25383 julia85224
Posted
Tastyron julia85224
Posted
Explore this site and read everything. I've not missed a day on here and always get something new to learn.
Ron.
julia85224 Tastyron
Posted
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
EileenH julia85224
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Anhaga EileenH
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julia85224 EileenH
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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
Anhaga julia85224
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EileenH Anhaga
Posted
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?
Anhaga EileenH
Posted
So for now I'll even have to stay out of the sun.
EileenH Anhaga
Posted
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.
Anhaga EileenH
Posted