Just catching up others’ stories and my first reaction is that in many ways I’ve been very fortunate in my PMR journey.
I’d retired at the end of 2018 age 60 after 43 years in the NHS (non-clinical) and moved to QLD Australia in April 2019 to join my partner who was working there. My boss had described it as the best retirement plan he’d ever heard of! I was just getting into the swing of things when my mum became ill and died, so I was back in the UK September 2019 - February 2020. Australia closed its international borders in March 2020 due to Covid and we became ‘locked in’ for the next couple of years.
PMR started gradually for me around August 2020 with random aches, stiffness etc that came and went. I self-diagnosed lack of exercise (I’d been a fairly active gym attender for years but there had been a hiatus since my retirement / move). I joined the local gym and started doing several classes each week. Some days I thought things were better, others I wasn’t sure. Looking back now, I left it far too long before getting a GP appointment in late November. By this time the morning stiffness was much worse, it was horribly painful trying to turn in bed and get up in the morning. It eased during the day if I kept moving. It really had never occurred to me that I was ill - until I saw my GP that day I was convinced it was a need for exercise / then overdoing exercise and what I was looking for and expecting was some sort of physiotherapy.
This was a new GP in a new healthcare system but I could see he was taking me very seriously from the beginning, asked lots of questions and immediately ordered a raft of tests. Over the next few weeks these ruled out various things leading to his diagnosis of PMR. I was shocked to realise that it was a bit more serous than overdoing things at the gym, but equally glad to have a diagnosis and treatment plan even though I didn’t understand much at that point. I started on 25mg pred on 17/12/20 and noticed a difference within 24 hours. I started tapering about 6 weeks later and had my first rheumatology appointment around that time. I had a couple of flares - picked up in very high blood markers, no symptoms - at the 5mg mark and after the second one my rheumatologist started me on 20mg MTX alongside the pred. I got to zero pred with no more flares in November 2022, and have recently ceased MTX following reductions to 15 then 10mg.
My advantages as I see them now:
I was retired, on a good pension, so had no worries about work or finances;
I had prompt access to healthcare - Medicare and private - at a time when things were probably more difficult in the UK due to Covid;
Some ignorance is bliss - if I’d known some of what I know now I’d likely have worried more;
I just got on with life, I was a bit housebound at times but I occupied myself with reading, cooking, sewing, emailing friends, household tasks, pottering in the back yard trying to grow things. I was pretty tired a lot of the time and just got into the habit of resting in between physical things like hanging out washing;
My partner was supportive and we continued with our plans to try to see as much of Australia as possible, albeit with amended itineraries for me. Between spring 2020 and the end of 2022 I’d visited every State / Territory, every capital city, and all the big things like Uluru, Great Barrier Reef, Sydney Opera House, Alice Springs, travelled by train from Darwin to Adelaide, helicopter rides over Kings Canyon and elsewhere, outback road trips, river cruises to see crocodiles and other wildlife, walks through and cable cars over rainforests…..I have the most amazing memories despite PMR. I learned to plan and to pace myself, to sometimes say no, or to do the ‘lighter’ option of excursions while my partner did the more strenuous one. Quite often he went off on his own to explore while I rested, and he’d do a slideshow of what he’d seen - views, interesting buildings etc. Of course there were times when I felt rotten, miserable, tired, fed up but I kept telling myself this is probably the only time you’re going to be here / see this / experience this so get on with it, live in this moment;
Like many folk during Covid, I did online things (these really suited me when I was going through the worst of the pred induced sweats and didn’t want to leave the house), three Christianity courses with a church in the UK, two mindfulness & meditation courses and weekly online groups. As well as being interesting at the time, they have all provided me with new ways of seeing things and coping with life generally;
As I progressed through my pred journey I was gradually able to do more, including ad hoc voluntary work at the Uni where my partner worked. This was both interesting and a boost to my self-esteem and recovery in that I was once again participating in the wider world;
We had a much easier time of it through Covid than UK, other than a few weeks at the beginning life was pretty normal and we were able to travel domestically if not internationally.
The negatives - and again some of these I only realise in hindsight:
Navigating a new healthcare system was sometimes a bit of a challenge;
I should have seen my GP much sooner - self-diagnosis was wrong, wasted time, and meant things got worse;
I wasn’t given much information about what to expect (perhaps because it is so individual?) and there was nothing in the way of support groups or networks like PMRGCA UK. Consequently, I knew nothing about Sick Day Rules, carrying a steroid card, adrenal insufficiency etc. During my time on pred I had root canal work, bridge / crown work, wisdom tooth extraction, laser capsulotomy, colonoscopy, Covid vax, Covid, and never varied my dosage. I always told the doctor / dentist / nurse and answered their questions. I never experienced any reaction that I can recall. I did experience spells when I was often tearful / low mood and just put it down to being tired of being ‘ill’ but I now think it may have been adrenal insufficiency;
The ideas I’d had about how I’d get to know my local community and integrate as a newcomer didn’t happen, I just didn’t have the energy for anything, so I had virtually no local friends or personal support network. In the early weeks and months I could go for days in / around the house and see no one to speak to other than my partner home from work, but I was often too tired to be bothered with making conversation anyway, and I had UK family and friends on FaceTime if I wanted to chat.
Sorry if this is far too long, I think in summary PMR has made me appreciate and value what I have, and be more understanding of auto immune conditions and the impact they have on people’s lives. I returned to the UK last year and despite all the doom and gloom around NHS waits etc I’ve found my GP to be accessible, well informed, and likewise the local rheumatology department. Everything that happens to us in life is a learning process and PMR is no different. Personally, I’m more gentle with myself, don’t push myself to do everything perfectly, find it easier to say no, but equally grab opportunities to do / try new things now that I feel so much better and am able to.
Dr.: You don´t have PMR and PMR is not a disease in the muscles?!
Where to now?
No wonder I have PMR.
Paxlovid for Covid if you have PMR
Have I told you lately...I hate PMR!
