Fiftyfive years young and 8 weeks into pmr - PMRGCAuk

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Fiftyfive years young and 8 weeks into pmr

Inger62 profile image
13 Replies

Fiftyfive years young and eight weeks into the world of pmr. Dealing with it and not planning to let it take my joy of life away. Life is short and pmr isn't the worse diagnoses to be confronted with, and after 55 healthy years, one can only be grateful to have made it this far. Pred is a challenge, but aren't we lucky to live in countries where medicin is awailable to most? We can aid the healing process by cutting out sugar and carbs, eat healthy foods and make sure we excercise regularly.

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Inger62 profile image
Inger62
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13 Replies
Rose54 profile image
Rose54

Love your attitude

Well come too this wonderful site

One thing better then Pred is laughter

Inger62 profile image
Inger62 in reply toRose54

Thank you Rose! We all know the anxiety when the pain and stiffness spreads/creeps like an Alien under our skin, from lower back, to thighs, back up to buttocks, and then suddenly you can feel something creeping up between you shoulderblades, slowly, hour by hour, and then the next morning you shoulders and neck are on fire, and you realise you have had a light headache for days-been tired for no reason for weeks. And then one night in the early hours: can't turn in bed, frightening, the Journey to the WC feels like hours, and if I didn't have my 78 years old Mum who's been fighting pmr for 3 years- I would have called an ambulance. I was "lucky" compared to many of you guys, because I just knew.. I had seen my Mum.. Still, it's been scary and sad for me as well, and yes, it's unfair to get this illness at only 55, and yes, pred is no joke. It takes a while to get used to the thought... But: I am only 55, I live in Norway- with a public free health care system, I'm a single Mum of a 16 and a 18 year old, I teach immigrants & refugees Norw, I have many good friends and many dreams - so yes doctor: give me the preds, and let me get on with life! To cut out sugar & carbs is a small price to pay, if that can help avoiding side effects, to walk and walk in the Autumn sun is a priviledge. It's never to late to make changes in lifestyle. Life has certainly had its challenges, and there will be more to come, but my physical health has so far given me zero trouble. And no gca so far. I'm grateful- so grateful. Started 15 mg pred 11 days ago, instant fatiguerelief, and most og the pain gone by now. Life. Heaven. Relief. Will taper slowly, starting in 1-2 weeks. A job that needs to be done. Thanks for listening, and my sympathy to all of you have tougher pma, gca, and side effects from pred- It could have been me. We're all together in this pmr-nation, no one else truly understands- still, don't let it define us:?We are not the disease- We're just unlucky to have some crazy immunesystems, and to be of nordic decent (but according to my refugee/immigrant students- from Asia, Africa, South-America- to be born in Northern Europe ( Norway), is like winning at the lottery-so I guess I'll have to accept my pmr genes... Be well.

Zofitmogelijk profile image
Zofitmogelijk in reply toInger62

Tusen takk for sharing your story I do hope your pmr journey will be a short one 🇳🇴

Inger62 profile image
Inger62 in reply toZofitmogelijk

Tusen takk Zofitmo! The very same to you! 🌻

Rosedail profile image
Rosedail in reply toInger62

I too had the "advantage"of seeing my Mom go through PMR and learning from her. She was 58 (20 years ago) and it took well over a year and several different physicians before a gerontologist finally recognized her symptoms. It took me a few weeks to realize that at age 52 I was experiencing her same symptoms and then another few months to convince a physician and get a script for prednisone. My mother's father suffered terribly from "rheumatism" starting in his 50s and I've wondered if it was PMR. Alas There was no prednisone for him and he had to give up his career as a weaver leaving my grandmother to be the main bread winner. My Mom was able to wean herself off Prednisone in three years and I in two years. We are indeed very lucky!

Inger62 profile image
Inger62 in reply toRosedail

Hei Rosedail! Thank you for your story. I'm so glad to hear that both you and your mum were able to leave those badtasting pills behind you in 2-3 years! It inspires and helps keeping moral and mental strength strong and hopeful. It also makes me feel less "alone" with a diagnosis that is often called a typical old peoples disease here in Norway. Even in medical info sites- THAT really made me feel old.. Not any more though: I'm not alone, and my body, and certainly not my head- are not old! I'm so glad I found this forum, and that you are still here, even though you're out of pmr! Thank you and enjoy! 🙋

SheffieldJane profile image
SheffieldJane

Yes yes yes Inger62 and we need to hang on to these positive thoughts when we hit the bumps in the road which we do with resounding regularity. I like your style!

PMRpro profile image
PMRproAmbassador

Yup - a lot worse things that could be on the menu!

Kaerick profile image
Kaerick

I'm right there with ... 55 years young and diagnosed in August as well - everyday is a challenge and I'm continuing to work 45 - 50 hrs a week - Thank you for the reminder - we have a lot to be thankful for - one of which is this health forum with soo many wonderful aunties and uncles who are inspiring and helpful! Cheers and hugs to ALL of you! 😘 Have a beautiful awesome day!!

Kathryn from the beautiful 🇺🇸

Inger62 profile image
Inger62 in reply toKaerick

Hei Kearick! Working hours in the US are crazy... You have been very brave! In the social-democratc Nordic countries we have 37,5 hours per week (that is minus the 30 min breaks) - full time job. Yup- me too: went to work every day. First 3 weeks no med, then 3-4 weeks NSAIDS, then pred. Yes, I'm glad I finally joined you nation! 🇳🇴 🌻

Therealsue profile image
Therealsue

Ah Inger - thank you for your post. You are so right when you say that we mustn't be defined by PMR and there are a lot worse things in life to have. I woke up feeling a bit sorry for myself this morning and reading your post has made me feel much better. Good luck with your PMR journey and keep those positive thoughts coming. x

Inger62 profile image
Inger62 in reply toTherealsue

Hei Therealsue! So glad I could send a little sunshine over the North Sea this morning! Will do again if needed! Now let's have an early night and painfree long night's sleep! And then waking up to a new interesting day. Could be rainy, could be sunshine, could be frost on the grass- you never know in Oslo. But beautiful anyways! ☕️🌝🌈

Seija profile image
Seija

Hej Inger, - hold on there. And god jul

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