Posted , 10 users are following.
Thankyou so much to everyone who replied to my message. I now feel much better emotionally. I find it hard to slow down having been a very active person. I used to run 5-6 miles, 10 min miles, 3 times a week and think nothing of it. I can now only manage a slow 3 mile run once a week but I keep telling myself that it could be a lot worse.
I keep smiling
Thankyou again
0 likes, 12 replies
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lynda62707 susan41679
Posted
Silver49 susan41679
Posted
Good to learn that you are feeling emotionally better, Susan. It's a bit of a rollercoaster but there are so many people on this forum who can empathise and who can also let you know if they have experienced something similar. It certainly helps to know we are not alone.
EileenH susan41679
Posted
Our pleasure Susan - many of us have been there at some point. It does get better - especially once you discover you aren't alone in your rather dark room.
And with an athletic history like that - no wonder you feel so down.
Michdonn susan41679
Posted
Good Susan, don't give up. Last May PMR put me in a wheelchair. Last winter after walking a bit more day by day I recovered to the degree that I worked as a ski instructor at 2 different ski areas. I am 80 years young and the oldest instructor at both areas and have PMR. Stick with it , stay active, positive and smile. ??
Abella-Linda Michdonn
Posted
I am so pleased for you to be able to do such a great job, I am proud for you.
Yes keep smiling as smiles are catching..
Michdonn Abella-Linda
Posted
Abella-Linda susan41679
Posted
Keep going Susan I too was always very active, always 'doing', rarely sitting still. Then I was hit with
PMR and GCA and had to stop as couldn't do anything else. Am pleased to say that it has taken time but am on my way to better health and have been learning how to let folk help me sometimes.
All the very best to you on your journey. Big Hug
Anhaga susan41679
Posted
So glad you got back to us. Don't worry. You have a fairly serious systemic illness. just because it's invisible doesn't mean it's not there, and you have to take good care of yourself and be gentle. You may not be able to do the running you could manage not so long ago, but as you begin to get well again, as the inflammation is controlled by the prednisone and you gradually lower your dose (slowly, slowly, remember) you will find yourself starting to be more your old self again.
But you will never be completely your old self again. Even the experience of this disease changes us, and I will go out on a limb and say that in nearly all cases it changes us for the better.
Silver49 Anhaga
Posted
I agree, Anhaga. It does change us but it means we have to rethink our lives and realise and appreciate what is important. There are trivialities in life that are not worth losing sleep over. Initial lack of energy will soon let us see what they are but remember we CAN 'stop and smell the roses'.
EileenH susan41679
Posted
And Susan - I fogot to say before but a member of another forum, heavily involved in the charities, was a fire fighter and training for a marathon when PMR struck and put him in a wheelchair. He started with hydrotherapy - his employers covered the cost - and in 18 months was back to running 5K, 10K soon after. He is also back to climbing mountains.
Google "skinnyjonny john robson" to get links about him including his Twitter one which says this "Fire & Ice expeditions, Polymyalgia sufferer, runner and mountaineer. Running free with a smile again..."
It will come - but you need to be patient.
Michdonn EileenH
Posted
dan38655 susan41679
Posted
I haven't checked in here in about a year, but checked up and saw another active person now grappling with PMR.
I'm 5.5 years out from my diagnosis, and still managing symptoms with a flexible 3mg of pred (requirement varies seasonally I've found, I need more in the summer, less in winter!).
Stay active and on your feet if possible, especially during the early hours when you have the energy. Remember that your dosage requirement in real time is in your own hands, so don't be rigid about dosage when symptoms worsen. Outdoor air can only help in my opinion.
Best of luck.