I’m feeling low today and pondering on the things I dislike most about having lived with PMR for six years. And I’m struggling to find anything to describe as the best. So I’m looking for input and support from this great international “club”, which I realise is probably the BEST thing.
For me the worst thing is not being able to plan my life and stick with the plan, sometimes on a daily basis and sometimes hourly. My plans so often have to be changed because PMR has reared its ugly head again.
I just wondered what you think the best and worst of this condition are…..try and limit yourself to one of each and let’s see what we come up with. Thanks for your support as ever, Chrissie
Written by
Zebedee44
To view profiles and participate in discussions please or .
I'm trying to figure out what the best of PMR is, and I cannot find any. But the bad ones are countless: PMR slowed me down in every aspect of my life, changed my plans, and very often feeling fatigued, but I cannot rid of feeling guilty that I don't do enough because I'm lazy, the weight gain - again feeling guilty because of low will power etc. etc. Still sometimes think that PMR is just a bad dream.
- lack of knowledge from GP's and specialists resulting in poor, inappropriate care
- loss of stamina, strength and agility
Good things
-how the enforced need to slow down, adjust my lifestyle and put in place appropriate interventions, have enhanced my life in ways I couldn't have imagined.
- accepting that steroids are my ally and not my enemy in managing the condition.....when I did this, stress levels were reduced significantly
- this informative, reliable forum where friendship, support and advice are offered in abundance.
Those who know me in real life may have a different opinion, but I think having a chronic pain condition has made me more empathetic, and maybe a better person.
I could have developed another autoimmune condition much worse than PMR. My life has changed but PMR has helped me to be more tolerant of other folk with “ unseen problems “ 💐
I got stuck around 10 mg for a long time. I am at the moment trying to reduce to 7.5 mg. I have to go extra slow. I do the slowest reduction possible and repeat at each stage. I also “ give myself a break” before reducing again. I am the typical “ tortoise “ not the hare! Xx💐
Thanks for your quick reply. And hope your journey proceeds carefully albeit slowly. I got ‘stuck’ around 8mg and now slowly reducing. It has taken me three months to reduce to 7mg using the slow method and .5mg hops. Though hardly hopping !
I was stuck at 8mg for about four of the six years and now slowly negotiating the taper down to 6.5mg. I’m getting pretty fed up with this long slow frustrating condition. Good luck with your taper.
Bad: the roller coaster of feeling well then feeling crap; coming to terms that I may be in the small percent who has this for life.
Good: better diet, learning to advocate for myself, trained up my docs who now know more about PMR and GCA, early retirement, really appreciating when I feel well, this awesome forum!
I haven’t even begun to fear that this might be my future but it has certainly spoiled my last six years and I lose so many beautiful days to feeling so “crook” as the Australians say.
I'm sorry you're feeling low and hope it soon lifts.
One good thing about having PMR & GCA is having friends who I never would have met before developing these conditions.
One bad thing is mourning the loss of my previous good health - but 6 years down the line, who knows what else might have been? In those 6 years, 2 friends who were younger than me have passed away and I'm still here. So maybe that's another good thing, rather than bad.....
Bad thing: while grateful for prednisone, methotrexate, and Actemra-I find because of them and their effects on immune system I often feel I am not the wife, Mom, grandmother and friend I want to be, as I do not show up to a lot of events in the fear of getting sick and making me even sicker.
Good thing: the honesty found on this forum in peoples stories, feelings, and support offered. It often amazes me a group of strangers can be more supportive than doctors, family and friends…everyone here understands, which I am so grateful for❤️
The consensus seems to be that this forum and the sense of community support we get from it is very much the BEST thing. Thankyou everybody for responding to my post which has confirmed for me that I am not alone in feeling the way I do. Particular thanks to the fabulous people that daily respond to all of us with their well informed and considerate comments, PMRPro, Dorset Lady, Jinasc and Mrs Nails. Huge gratitude from me who has lost contact with so many friends when I have no energy to keep in touch. Chrissie
Good: When the robin sings pre-dawn I go outside and 'answer' by gently whistling through my teeth - he lands on the washing-line (I can just make out the pegs jiggling as he lands) and waits for me to feed him tiny pieces of cheese from my hand. It's taken me since July and a lot of cheddar to earn his trust - I'm under no illusion it's me he wants to see but that little bundle of feathers flying towards me is a thrill.
Bad: The sense I am going backwards in searching for solutions to new symptoms which never reach any conclusions. I suppose I am going backwards in energy, stamina, belief and motivation as I age (I always forget that bit) I'm an optimist by nature, being sorely tested!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How best to manage my PMR symptoms?
PMR and Itching?
The chronicles of Ozzy and PMR
