A very good late PMR morning (it was when I started writing this) to anyone picking-up this post. Having followed the forum for a couple of months, written 1 reply and gained an enormous amount of useful information, I am “taking the plunge” and introducing myself. I’m not a great social media user (I have my personal reasons), so this has been a considered step. Why am I posting now? Well, having totally used up all my spoons over the last couple of mad days, I’ve relegated myself to bed for the morning and writing this post is, I think, a positive use of my time.
So, here I am. I’m 60 years young, slightly mad, recently retired nurse & widow. I live in an old falling-down cottage which I love to bits, but which is a complete money bucket, surrounded by my beloved garden, in beautiful countryside with my collie dog, aged cat and new partner. I also have 1 horse, having sadly lost the other one last year. The former lives in more palatial surroundings than I do. He incidentally has Cushings syndrome, diagnosed around the same time as my PMR. unfortunately his tablets are a lot more expensive than mine and no NHS for horses. My nickname for him currently is “Sick-note”! We used to do a lot of competitive dressage, but both our bodies are ruling- out that at the moment.
I’ve always lived life in the fast lane, doing high stress jobs and a little more burning the candle at both ends than was necessarily good for me, but I’ve always eaten good food and despite plenty of things going wrong with my body over the years I have been physically active and been blessed with youthful genes. The last 8 years though, have been really testing having lost my mother and father in quick succession in less than good circumstances and then suddenly lost my husband in truly horrendous circumstances 5 years ago. So lots of trauma there which had to be dealt with and the fallout continues even today. Fortunately, I was lucky enough to meet somebody last year who has brightened my life and helped to lighten my load. Having returned to nursing 15 years ago after the same period out in industry, I finally threw-in the towel in September, having decided that fighting the madness that is frontline NHS at the moment was not in my best interest. I’d rather be broke, healthy and happy, than miserable, sick and only marginally better-off. In the light of my PMR diagnosis, this proved to be a very sensible decision. So, I have been officially a pensioner since January 21st and am adapting to a slower way of life (we’ll slow by my standards anyway). This includes, joining the WI, attending a residential course at Denman College, outings, riding the horse when I’m up to it, walking the dog virtually every day, going on 2 week holiday to Sicily where I managed to slowly walk up a 340metre high almost vertical lump of rock and round 2 craters of Mount Etna. We averaged 5 miles a day walking with lots of sit downs.
I was diagnosed with PMR 23rd November 2017. There were a few warning signs that something wasn’t right in the preceding months. Blocks of a few days feeling very lethargic and dragging myself around to do normal tasks & work, but no pain. Crunch time came 30th October when I woke up feeling rubbish. I was off work for a week with a strange virus like illness (not flu). It came on suddenly and wiped me out for about 5 days. By Nov 5th I was pretty much fine and enjoyed the fireworks and had friends round for dinner. Next day got up at 05:30 to go to work and had real stiffness and pain in the back of both thighs in my hamstrings. I had to sit on the bed to get my socks on. That’s weird I thought, perhaps I overdid things after the virus. Sciatica in both legs? Unlikely. Virus got into my muscles? Humm.. Oh well, kick-on and perhaps it will go. Well, long and the short of it, it didn’t, although it was a bit better in the evenings. Colleagues at work thought it weird (bear in mind, these are doctors, nurses and therapists working with predominantly older patients!) Post-viral syndrome thought most likely. After a week and it getting no better I hobbled into A & E to see a patient and ended up being one myself! Seen by an Emergency Nurse Practioner who thought it most likely to be sciatica (i’ve got a typical nurses back!) and gave me strong anti-inflammatory tablets & Co-codamol and a week off work. I wasn’t convinced with the sciatica diagnosis - both legs? It didn’t feel like nerve pain either. Aha!! Come the next Monday, the light bulb 💡 goes on and starts flashing. Pain has now gone to my shoulders & back of my neck. S***!!! I know what this is. Why oh why do I have to take after my mother so much??? I rang my GP practice, no appointments left, of course. I did manage to persuade them to get the on-call to ring me. Bless her cotton socks. I described my symptoms. She said I needed urgent blood tests that day and booked me in for an appointment with one of the other GP’s later in the day. I managed to drive myself down to the surgery, picked-up the blood form, drove to the local hospital for my blood tests and duly turned-up for my appointment in the afternoon. Dr’s first words? “Well, I wasn’t expecting these results”. Raised CRP & ESR, white cells normal, everything else normal. “You’ve got Polymyalgia”. “Yes” I said “ I’d kind of worked that one out”. So, started on 15mgs Pred & 20mgs Omeprazole and given form for blood tests in 3 weeks. “Do you need to know more about your condition now, or will you look it up on Google?” She asked. “I’m fine” I said, knowing full well she didn’t have the time and I could find all I needed to know out there somewhere. So I left with a prescription, a promise of a DEXA scan in 3 months (which has happened, and the results were not as good as I’d expected), repeat blood form, a tapering regime and a request to let her know how I was getting on in a few days. If it was PMR the steroids should make me quickly feel a lot better, which they duly did and I was bouncing off the ceiling and like a Duracell Bunny after 3 days. So symptoms to diagnosis in 3 weeks. Pretty good judging by many of forum users stories. Could it have been quicker? Yes. Partly my fault for soldiering on and partly A & E’s for not taking a full history, cursory examination and making assumptions. But we are where we are and things could be a lot worse.
I got myself down to 8mgs of Pr3d by end of April, but 9 was a bit of a struggle and on 8 I was feeling worse even though I went in 0.5 increments. So as I had a holiday coming up I went back up to 10mgs and felt better after a couple of days. I got back last Friday and am going to try the dead slow programme of reduction from now on. I’ll let my GP know what I’m doing when I talk to her this week about my DEXA scan result. I already know that my left hip is osteopaenic and right hip is border line osteoporotic from when I had the scan done, but I really don’t want to take alendronic or any other of the nasty drugs if I can avoid them. So I’ve upped my Vit D & calcium, just had 2 weeks in the sun, so that should have helped and going to try to get in 10,000 steps a day which the dog will appreciate. I’ve read that Vit K1 & 2 good too, so will ensure I get enough of them. If the GP has got any better suggestions happy to listen.
By the way, my mad couple of days were 3 hours spent on Monday grooming and washing my horse who I hadn’t seen for 2 weeks, walking the dog twice, acupuncture and 3 hours in the kitchen trying out new recipes for Sicilian food. Tuesday was 2 hours at the stables, walking the dog and a trip down to London to go to see The Rolling Stones at The London Arena (not spent sitting down!) which resulted in me getting to bed at 1:30 this morning. There are some things in life you just have to do, even if there’s pay-back time.
So, that’s me. Life’s not a bed of roses, but it’s what you make it. Hope I haven’t bored the pants off anyone whose had the strength and tenacity to keep reading. Looking forward to getting to know you. Think I’d better get up now and see if I’ve regained any spoons, although the cat and dog haven’t moved off the bed in the last 4 hours so nobody is chasing me. Seems a shame to miss the sun though, so may have to move into the garden if I can resist pulling up those weeds which keep waving at me!
Bye for now.