I, like a few of You Lot here in the UK, listened to BBC Radio 4’s ‘Infinite Monkey Cage' programme today - all about the Immune System and its many Mysteries.
Something that one of the expert contributors said (quite emphatically) made my ears prick-up in our context especially. It was along the lines that Stress is well-known to wreak Havoc within even a normally healthy Immune System and is a recognised contributor to AI illness in many people - not to mention a host of other illnesses.
His rationale is that dis-proportionately excessive Stress (of whatever type - and which we might struggle to process emotionally, possibly depending on our Personality Type?) can trigger an equally dis-proportionate Demand on the body’s natural Cortisol production (the normally stable and predictable Energy / Fight / Flight Hormone).
So, by my logic: if the delicate physiological / hormonal Adrenal / HPA Axis balance is already besieged due to excessive Stress pre-the onset of AI Disease - and then further exacerbated by natural Adrenal suppression if taking long-term artificial Corticosteroid medication to manage the worst of the PMR and / or (the potentially far more serious GCA) symptoms - that might just explain the frequent reports here of Stress-related Flare-ups and / or an increase in the Deathly Fatigue that is already a hallmark of AI illnesses.
Of course, Stress isn't the only cause of AI illnesses like PMR and GCA - or many others for that matter! And, the term 'Stress' is subjective in an individual's context and perception. From my amateur knowledge and personal learning about all things PMR, there can be a myriad of other genetic and environmental factors that also feed-in to or exacerbate this extremely complicated AI 'Cause and Effect' equation: including any or all of: Age, Gender, Co-morbidities, Genetic pre-disposition, Personal Circumstances, Regional Climate, Viruses, Infections, Injuries, and (as you report) even changes in the Weather!
As for potential Stressors - the list could go on and on...
But today's Nugget of Wisdom from an objective expert really confirmed what many of Us Lot report here anecdotally: i.e. Excessive (in context) physical or psychological STRESS - of whatever type - is often a significant Trigger in our types of illnesses.
And, by implication, Stress can also contribute to any or all of the Flare-ups, episodes of Deathly Fatigue and many of the other Challenges that we experience - even when trying to follow the best of Steroid tapering ‘plans’.
So, my Conclusions?
As always (and as many of You Lot rightly suggest):
Don't try to fight or over-analyse things. For better or Worse (and to use a cheesy phrase - sorry!): 'It is what It Is' - so Acceptance / Rolling-with-it might help you to cope on the Journey. Some aspects of the PMR / GCA disease process, course and duration are outside of our control, despite the best research and steroid tapering plans. Remember: our now, possibly greater in-tolerance of Stress (than before) is part and parcel of both our illness(es) - and possibly also a side-effect of the medication we are taking to manage the PMR / GCA symptoms. Yep, for many of Us Lot, it's a Catch-22. And Double Yep, there's no Magic Solution Booo! But.. try to remember that Things Could be Worse, and try to enjoy and make the most of the Better Days. Take One Day at a Time, since Tomorrow brings no Guarantees either way.
And finally: Although Smiles and Laughter can't fix anything in Life, they can be the most effective Coping Therapy of all.
Ok, that's it. I rest my case...
Goodnight and Best wishes for your week ahead.
'Uncle' MB
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markbenjamin57
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Totally agree with stress triggers. When I had leukaemia in 1990 I was treated at the Royal Marsden and my world leader professor told me he saw a pattern in the type of leukaemia I had in that there would be a surge of patients in spring (after the colds and flu of winter), mostly extrovert type A personalities, mid 20's with a high degree of stress, if not situational, added by life choices. It was anecdotal and not scientific but has always made me aware that when I get sick, there are usually some choices I've made or stressful situations leading up to it. Not rocket science but curiously accurate. Unfortunately, at the ripe age of 53 I still haven't learnt to contain impulses and manage my personality so that I can have a more stress free life but then that goes back to my initial extreme type a personality I guess. I'm not dead yet so maybe time to learn yet???
In my main work (Training & Development) over the years, I've studied Psychometrics and done a lot of work in the field of how (broadly..) different Personality Types tend to think and behave (motivation / psychological needs / approach to tasks and relationships etc).
Although it's not an exact science, the Type 'A's - More driven / competitive / achievement / task oriented - do tend to suffer more Stress related 'burn-out' than the 'opposite' type, i.e. more relationship / supporting / collaboration oriented. Your professor had obviously seen this across a large population of patients too.
This isn't intended as a plug for my (mainly silly) book, but in one Chapter I do expand on the stuff of how (again, broadly) different 'Types' might handle the unpredictable process of dealing with Change - and in the context of a major illness like PMR / GCA - with possible coping strategies for each 'Type'.
Also... for better or worse (!), we tend to be 'Who we Are' in terms of our broadly defined Personality Type from an early age - and throughout Life - although circumstances can temper our personality somewhat. So, most experts (Psychologists, Counsellors, Psychotherapists etc) agree that us Humans can't change our Core Personality with all of its shades: but we can learn to adapt our Behaviour - so long as we understand what triggers its more 'destructive' aspects.
As for the often complicated process of Behavioural Change (for anyone!), I think a good starting point is to really understand our broad 'Type' (as you clearly do!): and then identify / work on the Key Behavioural Skills that we see as our limitations.
E.g. for Type 'A' / more Driven / Impulsive etc Types, the developmental 'work' is often to slow down, think before acting, accept situations rather than try to control them, etc.
In my experience, Motivation is often Key Starting Point to successful Behavioural Change. I.e. to ask ourselves: 'How important is it for me / others?', 'Do I believe I can achieve it with a little effort / support / practise?', and 'What will be the Benefits / do I value them enough?'.
And, No.. we're never 'too old' to make Changes if the Prize is worth it!
I also have presented workshops and seminars including dealing with stress and personality types with CBT but..... although it's great head knowledge, I still can't catch the impulse and think first which CBT relies on. It would be great to listen to myself, I'm sure there's an interesting conversation to be had but it's just a rumbling jabber in the background that I don't pay attention to until I crash. I am a slow learner I guess??! 🤷
Angie, I agree with you about 'head knowledge'. CBT seems to be the latest 'thing' in therapy and self-development - but I've heard conflicting reports about its suitability and / or effectiveness for some people in some contexts.
It's only my (amateur) guess.. but for some of us the benefits of Behavioural Change (and the perceived risks) are outweighed by the benefits of staying the as we are - which is psychologically 'safer'! Objectivity and Logic often don't come into this emotional equation, or Life would be very dull!
When I was in psychotherapy for a short time many years ago and suffering from Depression after a tough period of Change and Challenge in my life, I remember my brilliant therapist often saying: 'Our Emotions Rule Us'. So True...!
The logic of CBT appeals to me and I can see how it works as you say, for some people. I too have battles with depression over the years, genetically fruit loop family, many other therapies bore me to tears. Lately have been reading about concept of people are disconnected rather than depressed, or not living as we should with large families, purposeful jobs and lives and connected to a community that we are able to meaningfully contribute to altruistically. Interesting as it means depression is caused by living unhappy lives and nothing to do with seratonin re-uptake. Curiouser and curiouser said Alice 😸
So true about many people feeling disconnected.. a societal problem as much as anything? If you want a good read, I recommend 'Manufacturing Depression - The Secret History of a Modern Disease' by Gary Greenberg. Funny and VERY thought-provoking...! Also, 'Smile or Die' by Barbara Ehrenreich: brilliant, and in the same vein.
Will look it up, can always have a good laugh. Lost connections by Johann Hart is the book that got me started thinking about links between depression and lifestyle after finding out about a-typical depression and situational depression. I used to be a high school teacher and still have many students come to me for advice, some about their own kids (!!! scary to be so old) and depression unfortunately seems so prevalent that I try to search for info so I can listen and possibly help. Thanks for the interesting development on this topic. Good to have a cerebral exchange when my m.o. is humour 🤣
Lol, Agiejz, when you do learn how to "Moderate and unlearn" could you pass on the wisdom please? Rather suspect you will make Bill Gates look like a pauper?
scats, from what I've learned here, the HPA axis / the physiological hormonal feedback mechanism (including cortisol production - which is essential for life) is highly delicate and complex - and difficult to fathom for some of us non-medics.
Maybe PMRpro or others can explain it in Plain English for us?
Good point, although I tend to think of Cortisol as the 'Energy' hormone which fires-up (for example) when we awake in the morning) to 'get us going' as much as when dealing with stressful situations. So, it seems that the artificial stuff (Pred) is just a top-up?
That said, I'm sure the Aunties and others will be along with their opinions too
It is a powerful antiinflammatory drug - probably one of the most powerful. All drugs have multiple effects - and any that aren't doing what you want it to do for you, you will term as a side effect. If you see what I mean. Pred does the same as cortisol - that's what we call the side effects of weight gain and so on. But normally cortisol comes in spikes, it isn't persistently high, just produced in response to need. The undesirable side effects come when there is too much over a long period of time.
There are so many kinds of stress we can't be prepared for all of them. I think I've planned my life to accept everyday situations that stress me so that I can live with them and then it only takes a phone call or letter to ' upset the applecart '.
I have to work around my husband's OCD and panic attacks and have about got that sussed but it obviously gives me an underlying base level of stress so that quite small unexpected events can push me over the edge.
We none of us live in a vacuum and as you say - take one day at a time.
Something I've learned (at my own expense!) about continuous Stress is that we can become 'habituated' to it. In other words, we psychologically / sub-consciously 'block-out' or deny the Stress experience and symptoms for various reasons.
And, it's well-known that for some People (e.g. Type 'A's), the Adrenalin 'Rush' that Stress triggers can actually seem enjoyable and become addictive, and we can't differentiate between Positive and Destructive Stress.
I find my ' enjoyment' of stress is short lived. Then when I become aware of it it builds up quickly and the dam bursts. But then trying to avoid it can be stressful too.
How is it that you look so disgustingly healthy? I am pleased that something has worked for you. You have got me thinking and I realize that looking after an ailing wife for fifteen years was the stress that triggered my G.C.A. I didn't begrudge Janet anything she was my everything and I miss her so much, I attended five hospital appointments on her behalf, we prepared at home and I set off to see her consultant with typed notes usually dictated by Jan and some photographs so Dr Wyke could see what she looked like, and though I stammered and shook in his presence I know that he appreciated the effort we'd made to keep him informed of her condition . I'd go through it all again if only I could have her back.
Thanks for the compliment - actually it's all done with mirrors and special lighting :-D. but seriously, I'm generally fortunate health-wise - despite PMR.
I've no doubt that caring for Jan put a lot of strain on you at the same time as coping with your own health issues over the years. Who can know if that triggered your GCA? But it sounds likely to me..
Nice to see you here - try to keep smiling on the Journey. On, and Forwards (or is it Sideways...?)
I'll definitely keep going, being a bit on the big side I tend to crawl under so others don't see me sneaking up on them. Although I've lost three inches in height compliments of Osteoporosis practically everyone else is shorter than me still.
I built an extension to my lounge bookcase over the weekend being very careful how I lifted the carcass up from the floor and drilled into the kitchen wall having checked that there weren't any electric cables in the way, to fix the holders so it doesn't fall over when it's filled with paperbacks. Gained a lot of space as well which will be a benefit as I started to reorganize my filing system last Christmas, working slowly as you can see. I was in charge of the filing system for the Architects Department when I worked for Suffolk County Council so I know a lot about filing.
Mark, when I keep busy it takes my mind off the awful headaches. Had to bump up the Paracetamol only by one capsules but at least I'm down from the eight I started with in March 2016.
Best to be 'laid back' or just' go with the flow'.
Many years ago a female boss of mine told me
"If you see some trouble ahead, don't go out and meet in head on, wait till it actually reaches you and with a bit of luck and a fair wind, nine times of out ten, either it won't happen or someone else will intercept it before it gets to you".
That Lady was right so many times and eventually I learned.
One day at a time for sure.....of course that sometimes has to be shelved. But in theory ...yes! And humour, as much as you can cram into one day, sometimes very black, but humour nevertheless!
Mine and my late hubby’s philosophy since he had his first heart attack in 1995, followed by triple bypass 1996, significant cardiac deterioration early 2000s and terminal liver cancer diagnosed 2013.
Oh throw in my GCA/sight loss 2012.
Not exactly a laugh a minute, but it sure helps! Needed again at moment for TKR recovery - been to physio this morning - more whinges than laughs!
Defo Long John Silver at the moment.....now where’s that damned parrot! ⚔️🏝🍍🦀🦐🐳 why can you never find a pirate or a parrot when you need one!
So true - and recognisable - after 33 years in the military (still going) - a few years as a 'plod' in the UK I thought how could stress effect me? A few months ago I was on a bus in Sydney and the driver was having a bad hair day and was heavy on the brakes and it was a very jerky journey (courtesy of the aforementioned jerk!) - result of this 'minor' stress - I could hardly get of the bus and had to stand holding onto a convenient scaffold for ages. I actually wondered how I was going to get out of this - ambulance - phone a friend?? - which of course added to the 'minor' stress. Anyway - after a few minutes and some deep breathing I managed to get to the base and have a LLD (little lie down) - but the effect of a 'minor' stressor lasted for days!! I now find meditation has helped me to remain calm and 'roll with it' - I hate it (the PMR - not the meditation) - but I cannot make the PMR go away, so living with it, not fighting it seems to be easier in the long run.
I can relate Piers - I'm certain that PMR (or similar conditions) and / or the Preds leave you more jangly and frazzled than before. And as you say, even minor stressors seem amplified..
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Chemical exposure causing GCA? Genetic testing?
Our bodies getting 'used to' a certain level of Prednisone
Bumps in the road. PMR tapering seems to have provoked GCA
Nobody gets it until they “Get it”
