Hi this is my first post but I have read many of yours and really appreciate the wealth of information that's shared through this forum. It's so incredibly helpful considering how many people I have met (and many professionals) who are unaware of PMR.
I am a full time carer to my middle-aged special needs daughter who has the mental age of a 19 month-old. She also has epilepsy, dysphasia (swallowing issues) scoliosis and cerebral palsy. For years I've had severe OA in my hands for which I have cortisone injections in my thumbs. I realise this ailment, along with my OA knees (knee replacement last year) is due to wear and tear over the years but there are people far worse off than I am and obviously I love my daughter very much and just get on with looking after her.
A few months ago I started to have the most awful pains in my thighs, wrists, elbows, upper arms, shoulders and neck (I bet you're all nodding knowing where I'm going with this) and it was implied my OA had spread. To both sides of my body at once?!!
I was in absolute agony with no let-up. I was already taking 15 mg of Butrans pain patches, 60 mg Arcoxia and 8 co-codamol a day. After 2 months because of raised ESR through my (controlled type 2 Diabetes) blood test, my GP said an infection was showing in my blood and sent me for a chest X-ray. (Even writing this makes me angry.) I never heard anything back so presumed all was ok but I had requested a shoulder assessment at the physio dept. at the local NHS Treatment Centre.
I was so desperate and worn out trying to cope with this pain I felt was going to bring my life to an end. I stopped going to bed - easier to sit in a chair all night so I'd be up to see to my daughter the next morning because it was so agonising trying to get out of bed.
Many days I couldn't get dressed or wash or even brush my hair and on the days I could dress I had to make sure they were loose fitting tops because I'd had to literally cut them off me with scissors because I could barely raise my arms above my waist.
When I met the physio at the treatment centre she examined me as best she could. It was obvious I was in agony and I asked her why it was on both sides of my body but she was baffled and asked me if I'd consider having cortisone injections in my shoulders. I felt that was a bit hasty without any kind of diagnosis and wanted to explore more. She went off to see the Lead Dr to discuss my symptoms.
She was gone for ages - like half an hour and I was sitting there thinking she must have forgotten I'm still here and moved onto the next patient. Then she walked in with the Dr and he said,
"I think I know what's wrong with you and I can give you a tablet today that will take that pain away by tomorrow."
And I was so shocked I said to the physio, "Jesus has just walked into the room."
It turns out after hearing of my symptoms and seeing the raised ESR he was pretty sure I had something called Polymyalgia Rheumatica. He immediately telephoned my GP requesting a prescription for 5 mg of Predisnolone 3 times a day for me to go and collect.
AND IT WORKED!
He also explained I would probably be on that medication for the net 3 years as it would be reduced very slowly.
15 mg for 3 weeks
12.5 mg for 3 weeks
10mg 6 weeks
Then reduce by 1 mg every 4-6 weeks depending on symptoms.
The next day I was able to put my arms around my daughter's shoulders and give her a big hug. Oh the relief of returning to my old self. Even the sound of my laughter felt strange as I realised I hadn't laughed in months.
PMR had affected every area of my life and what has shocked me is how unaware professionals are of this terribly debilitating condition. If that lovely Dr hadn't been on duty that day where would I be now? I'd already seen 2 GP's, a practice nurse, an occupational therapist and scarily enough, a physiotherapist. All had looked at me sympathetically and shook their baffled heads....
I am so thankful to have my life back, to be able to laugh with my daughter and not worry that I might die during the night and she would be left here, like I did before my diagnosis and treatment. But the experience also made me realise it's time to secure my daughter's future so that she is settled, safe and secure whilst I am still here and well enough to make that happen.
So that's my story and I just wanted to share it with you. Sorry to have gone on for so long but it just poured out.