Brief resume - I’m 53 - dx PMR April 2019 symptoms bilateral shoulder pain. Muscle aches. Went from very fit to very slow and in constant pain. I’d had several years of high stress with very ill daughter and then my dad died then PMR symptoms started. Bloods always normal. Responded to steroids. Tapered with some flares but stopped pred last autumn. Rheumy said not PMR. No other dx given. Have been in constant low grade muscle pain since. And very weak compared to before without stamina. Awaiting second opinion in September.
But in June I had to self isolate and did so in tent at bottom of garden. I did nothing. No cooking, cleaning , charging around. I couldn’t go to see my ill relatives who I regularly see. I had all responsibility taken away. I sat by campfire, read, slept, went to bed with the sun and got up with the sun. The world slowed down. I noticed the bird life in the garden. I had a glass of wine by the campfire as bats flitted above my head. At the end of the 10 days I felt something was different- then realised what it was. I wasn’t in pain. I could get up without thinking “this is going to hurt” and some of my strength came back too.
It felt like I had been rebooted.
Obviously now I have responsibilities again (both emotional and physical) and work and housework and some of the pain has crept in, but I’m shocked at how much different I feel.
Stress and the knock on effects on so much of our mind and body is so little understood.
I know my case is very mild compared to many and know that obviously recovery isn’t as simple as rest. I don’t think rest would have made a difference at the beginning of this journey
But rest - not just physical rest but emotional rest must be important- and I know we can’t absolve of our responsibilities - nor would we want to - but time for ourselves is important. I think I’ve always felt guilty having time for myself as I have older relatives and younger folk I need to be there for - but I’m more mindful that I need to find a way to worry less and accept there are some things I can’t change.
This is a rough old journey and everyone’s journey is different - but if you can - find time for yourself. Sleep under the stars (in a comfy bed!) accept there are things you can’t change. Change the things you can.
I hope I’m near the end of my PMR journey. I know it could flare or develop into GCA but I’ll not worry about that now.
I’ll make time to slow down and count the stars
Written by
Daisyfield
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the effects of stress are so little understood aren't they! and I know it's impossible to live stress free - but I'm trying to work out ways of reducing my own stress levels - sorry to hear about your STILLS dx
What a wonderful story of self care Daisyfield after all you’ve been through, what a gift. This is a very inspiring story. Please find time to repeat your retreat, what a balm for the soul. We must all try to do something similar for ourselves. I hope you continue to go from strength to strength.I won’t say the usual about your diagnosis and treatment, you’ve got all the self knowledge you need. 🌸🏕
Thanks you - this forum has been so valuable with information - and seeing other's journeys too on the way - the ups and downs. My GP thinks it is PMR but rheumy says not because of normal bloods!!!! but I'm seeing a second rheumy September (there was a 6 month waiting list) - I'm still not right - but one big thing is the loss of confidence - I went to seaside the other day (used to be a strong open water swimmer) but I couldn't go into the waves - suddenly thought i might not have streghnt to swim against the surf. would never have crossed my mind before. The mind has a slow recovery too x
Your GP is obviously better at PMR than your rheumy!! Up to 20% of us have bloods "in the normal range" - but it doesn't mean that an ESR just under 20 is normal for us. My personal normal is low single figures - at 16-18 I could barely move.
I know - I've had months I could barely move - creeping along - then feel like a fraud when rhuemy dismisses symptoms. I hope I'm recovering - learnt a lot on the way of chronic invisible illnesses - sorry to hear you had to sell campervan - I've always thought it would be a loveyl way to travel.
Ha! well we have a bell tent (recent purchase so that my 18 year old and 21 years old could have a few friends for their birthdays) - and my husband put a proper bed in the tent with mattress - so it's glamping really - but worth it - I don't fancy a roll mat anymore either!
We used to have a touring caravan with an awning and an an inner -tent for two of our three boys to sleep in. We had some wonderful holidays and met some lovely people. Our boys loved it and so did I and we created many happy memories. Then the day came when hotels and country cottages with all mod-cons held more appeal. Moving on and adapting is a natural part of life but the memories will always be with us.
Wonderful story. I had a shocker like that in that I felt rubbish then went on a cruise. I was waited on, did nothing but look at the sea and rest any time I wanted. It was a wake up call that all the crap at home was doing harm. Knowing it is possible is a revelation.
Good for you. As much as we dislike it, we have to look for what is now possible and discard what is not. Admitting to oneself is hard but acceptance is a relief in many ways.
Dear Daisyfield, your wonderful, inspirational post clearly written from the heart made me quite emotional- in a good way. I absolutely agree that stress can and does cause physical illness. I was in some ways like you with my life often revolving around catering to the needs of others. I wouldn't change a minute of it but I'm sure it all contributed to my PMR when my body eventually said enough is enough and I was forced to slow down. I have to say that I was warned and that if I knew then what I know now........However, I do know now and am in a completely different headspace which is basically due to cultivating the ability to know when to stop. Thank you, and here's wishing you all the best for the future.
Truly Daisy that is amazing! I always say now that if l had my time over again l would NOT have struggled on, gone to work, have my husband drive me in, take my coat off me & set up my Morning Clinics!….It took a while for the penny to drop but it did eventually but my then the damage was well & truly done. I always wanted to go to Ireland & sit/rest in a cottage by the sea…..
I came to realise later on if l had a flare l would ‘Clear The Decks’ cancel everything in the diary (except my nails 💅🏼) to try & help.
I’ve had a set back over the last two days caused by stress & excitement but at least l realised what it was so took the necessary steps.
It’s a very thought provoking idea, maybe you could do it a couple of days a week 😉
I think a clear the decks few days are essential- abd the problem is it’s not always possible is it - for many reasons - finance , caring for others etc. But if we can take little steps to have more time it must be better. My husband - who has a busy job had to do everything for those 10 days and he actually said he didn’t know how I did it and do my job too! Ha! After 25 years of marriage!!! My neighbors saw me in tent and joked they’d send a false isolation ping so I could have more tent time! 😅
Thank you so much for this post. I have had a very stressful few years and wasn’t at all surprised when PMR struck me down. I think the message that you have left here is good for life in general, life has become more and more stressful for everyone as the years have gone by. People now struggle daily with technology, pollution, demands of consumerism, increase in traffic etc. and then there are the people who live on the poverty line and of course there is Covid!….. and this is before anyone takes into consideration all their personal responsibilities! No wonder so many people are struggling with their physical and mental health.So Daisyfield, thank you for explaining how a ‘by chance experiment’ led you to understand something we all need to learn and that looking after ourselves should and must be our first priority, if we are ever going to get well and stay well.
Yes - and it's hard to slow down - and I'm always hugely aware and grateful I have a roof over my head and food on my plate. I hope the positive things we can take from covid are to appreciate the world around us, realise we don't need loads of clothes etc etc,
Especially the concept it is right/you're entitled to eat out/have take out multiple times a week! The cost and the waste of food just makes my mind boggle!!!!
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