"Change comes because we live within a system governed by entropy. Change comes because our sense of control is an illusion.
As writer and philosopher Alan Watts says, we cannot be happy until we find a way to accept that our life is riddled with insecurity. For as long as we want it to be fair, we suffer. Change invites us to surrender. And if we refuse, it carries on regardless."
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PMRpro
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Oh yes - I see what you mean alright. But there is likely to be a long period much like the 50s and 60s - and if we learnt one thing it was to manage with what we had, didn't we?
Yes one thing pmr/gca does is make you take stock of what is really important for your health and sanity!!! we may all have a slight advantage over others forced to lock down, as our adjustments have already been made to allow us all to cope with the challenges posed by these life changing illnesses and life does go on and there are lots of wonderful things to still see and do, Happy Holidays at home 🏡 everyone 💐
What an interesting article describing how .. 'these times out of life have an emotional quality all of their own, a heady mix of intensity and drift. My attention is entirely unmoored' which, without intention on my part to 'tackle' isolation in any particular way, is how I've evolved over the past 4 weeks.
Alan Watts has also written that Life is Not a Journey, more like a dance, or music, where the doing is the reason, not the goal. Hope you'll allow a video describing this, it's fun: youtube.com/watch?v=rBpaUIC...
Oh, hello brain, I think you've just been woken up.....
Greetings! I’m RD in Los Angeles. PMRpro I’ve read a few of your posts. Thanks for your insight and sharing your experience. I’ve had PMR since early Feb 2020. Horrific dual shoulder pain and leg aches. Ducked into hospital twice as I was incapacitated and racked with pain. Took 8 weeks and three Drs to diagnose me. I have a great Rheumatologist (Boris Ratiner Tarzana, CA) now.
I’m having a very rough day filled with pain and stiffness. I’ve had really good days recently except for a few hours in the morning. I’m on 20mg of Pred - down from 40mg where I started. I’m 64, male and have lost 30 pounds (232lbs). BP is 122/80 and other vitals are normal.
I try and walk 10-15K steps daily. I am also battling diabetes and have lowered my numbers significantly. I wondered if you are aware of any interactions between PMR & diabetes. I’m taking 2,000 mg of metformin currently but that will be dropping soon.
Hey I’m open to discussing any related issues with anyone and sharing the dance. I’m a lifelong learner and am ready to extend understanding and grace. Thanks!
You might get more responses by making this a new post.
What I would suggest is that maybe your 10-15K steps might be a tad ambitious with PMR and still on a relatively high dose of pred. 40mg is a very high starting dose for PMR, it's the bottom of the range for GCA, and it may be having an effect on your muscles. Pred only relieves the inflammation - the actual underlying autoimmune disorder is still ongoing in the background attacking your muscles and leaving them intolerant of acute exercise.
I guess others know who Alan Watts was, so please excuse me if I'm being pedantic. He popularized Eastern religions, especially Zen Buddhism, in the 1950s to 1973, when he died at age 58. He was a smoker and alcoholic, which probably contributed to his heart disease. In my youth, everyone read his Art of Zen. 😊 Thank you, PMRpro, for the Guardian piece.
Could you explain further about the “underlying autoimmune disorder?” What does that mean? If the Pred only deals with “inflammation” what deals with the underlying condition? Anything? I’m currently on 20mg of Pred for next 3 weeks - then Dr wants to drop to 15mg. Thx Pro!
PMR is not the real illness, it is the name given to a set of symptoms which are caused by an underlying disorder, and there are several. It is found in various inflammatory arthritides, in some cancers, chronic infections amongst other things. A diagnosis of the PMR we talk about is one of exclusion - you exclude the other options and it is the only option you are left with. One of the criteria is response to corticosteroids - the pain and stiffness is felt to be characterised by responding well to a moderate dose of corticosteroids but not to other painkillers.
Obviously it depends on the underlying condition - but the PMR we talk about is classified as a vasculitis, inflammation of blood vessels, which is part of a spectrum which includes GCA (giant cell arteritis) at the other end. In the case of GCA it is possible to do histology which shows the formation of giant cells in the artery walls. In the intermediate form, LVV or large vessel vasculitis, various modern imaging forms can show inflammatory changes in the artery walls which have been shown in some cases to have the giant cells - but histology is only possible as part of open surgery for fairly obvious reasons. It is assumed by many that PMR may be due to inflammation in capillaries - leading to reduced oxygen supply to muscles.
The underlying problem is an autoimmune disorder - where the immune system malfunctions for some reason and starts to attack body tissues because of an inability to recognise them as self, causing flu-like symptoms amongst others. There appears to be a wide variation in how it manifests which makes it hard to diagnose as there are no specific tests, it is a clinical diagnosis. There is no cure - but both PMR and GCA generally burn out and go into remission after some years and there is no more need for management with corticosteroids. GCA seems more likely to resolve but PMR does go into remission within a couple of years for a third of patients, up to 6 years for half. But 40% of patients still require some degree of pred at 10 years although for most it is a very low dose. Possibly 5% need pred for a very long time.
Thank you for this explanation. It helps me to understand why I can have both PMR and several other autoimmune conditions, including inflammatory arthritides.
I'm not convinced that a/i disease is a load of different diseases - just different people in whom it manifests differently. So I have PMRpro syndrome and you have Joaclp syndrome In the past you got a label depending on the majority of your symptoms matching something someone had spotted and described. Now with imaging and blood testing and genetic testing they are renaming things.
This is so true. I think we are happier when we accept that we do not have the power to change everything. Hopefully when we come out of this difficult period, we will appreciate what we have and the simpler things in life.
Thanks for Alan Watts and for your comprehensive explanation of our illness- especially the reminder that we each actually have our own illness with perhaps roughly correlating symptoms. Something to think about.
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In the past you got a label depending on the majority of your symptoms matching something someone had spotted and described. Now with imaging and blood testing and genetic testing they are renaming things.
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