I have noticed over the three years since I joined this group that many of us ran headlong into PMR and/or GCA as very healthy, active people. It leads me to wonder if, somehow, being healthy and active at 50+ predisposed us to the condition, like nature's way of telling us to slow down. I haven't looked for statistics that would give me a clue about it but this question has occurred to me many times, so I finally decided to post on the subject. Any thoughts?
STRONG, HEALTHY AND ACTIVE PRE-DIAGNOSIS? - PMRGCAuk
STRONG, HEALTHY AND ACTIVE PRE-DIAGNOSIS?
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LIVEORDIEHEREIAM
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Well, I wouldn't say that I was particularly fit and active pre-PMR and I was a bit overweight and had high blood pressure. However, what I would say is that I very rarely suffered from trivial illnesses such as colds and coughs, compared with the rest of my family who are always coming down with something - and I almost never caught anything from my family. I have been wondering whether my immune system was a bit too good and it tipped over into attacking my body, hence the PMR. Interestingly, when I had Covid in the spring after developing PMR but before I started taking Prednisolone I had it very, very mildly (and more mildly than my healthy husband). Not that I am complacent about Covid. I still wear a mask in many places and am scrupulous about washing or sanitising my hands. I certainly don't assume that if I caught Covid again I would have it equally mildly. I may just have been lucky last time and am obviously more vulnerable now that I am taking steroids.
I would say I was pretty fit but I would also agree that I too hardly ever got sick which as you mentioned could be the result of a highly active immune system. I do know that my next and shoulders hurt most of my adult life which I attributed to hanging over a computer at work.
I was very active and healthy as a horse. I'm a teacher and never got the illnesses that my kids always brought in. There might be something to that. I'm in the 14th month of PMR. I just had a major relapse. back up to 10mg right now... I feel like I'm never going to feel good again. Best of luck to everyone suffering from this horrid condition.
HI there,
Well firstly I must make it clear that I'm definitely not an expert on the immune system, but I know that there are others on here who are and they will probably be along shortly.
However, I personally feel that having a strong immune system is not really the cause of PMR developing. Although many of us were fit, healthy and active prior to diagnosis, there has always seemed to be other common factors involved too..... such as another virus or illness preceding the onset of PMR symptoms, some kind of physical, mental or emotional trauma happening or excessively high stress/anxiety levels.
I feel these other 'influences' are the triggers that possibly confuse our immune system and send it into chaos rather than the fact we were super healthy beforehand......and we can't forget that not everyone who has developed PMR was actively involved in taking good care of their own health or wasn't experiencing other health conditions also.
The question of why we get PMR/GCA has been discussed here many times. There is no definitive answer but most people will agree that an often prolonged or sudden period of emotional stress, physical/mental trauma, accident or injury has impacted their health to such an extent that the body doesn't recognise itself and the natural balance goes haywire resulting in an assault on the system. I may well have not explained this as scientifically as others but the following link is interesting: healthline.com/health/autoi...
I have been with PMR about twice as long and can tell you that my impression is that there are very few fit people in this community, about as much as you would expect in general population. However stress on immune system being one of the main factor to trigger PMR, very hard workout season can contribute to or aid to develop PMR as many other factors. My PMR started as I was in full training for triathlon, but also about the same time my kid got chickenpox. Now who can tell which one pushed the immune system over the edge? Or could be some other factor that I have not noticed...
The important aspect of being fit pre-PMR is that recovery and regaining strength is much faster... at least that is my experience.
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I don't think that is necessarily the case - but what probably does apply is that the people who notice a significant change are those who were previously active and particularly if PMR stopped them indulging in their usual sporting activity. The number of high level athletes isn't that large - although professional athletes do often have dodgy immune systems. What is clear to anyone who reads all of all the threads is that many were the doers in their families and used to being at everyone's beck and call. That in itself sets a level of stress and that affects your immune system at a low level ongoing and probably makes it more susceptible to becoming deranged.
Yes the "doers/fixers" and everyone's "beg and call" that was me! But I also had emotional stress and some infections before it began. There seems to be some seasonal issues as well in north America at least. Then there is also the stats on being Scandinavian, or of scandinavian descent which increases the likelihood of getting PMR.
The common factor I have noticed is that people are highly conscientious, probably overly conscientious, about things that they see as important - perhaps that leaves us open to stress.
Viveka, Ahhhh!....You got me pegged! I'm the last one to think about that aspect, probably because that is the color I wear! Thanks!
I developed the condition a couple of months into the first Covid lockdown: the stress trigger for that is pretty obvious, I imagine; at the same time, I definitely became less active. Although I kept up daily exercise conscientiously, it could not replace the activity I was used to
From my own experience, and in hindsight, I believe my good levels of fitness and energy contributed to the onset of PMR after taking for granted I could just go on and on in my role as 24/7 carer for 4 family members. This went on for about 12 years. I didn't look after my own health (no time, and a reliance on my body to get through it). Stress levels were very high at times, both emotionally and physically but as Viveka says I was probably overly conscientious and hesitated to ask for help from other family members. My lovely parents and aunts all lived into their late 90s - my Dad just missed out on his 100th birthday telegram and there was a lot of love between us all, which also helped to mask my exhaustion. Two years after they'd all died I was diagnosed with PMR, just as I was starting to enjoy my freedom from responsibility.
Anyone who is looking after others should always take the time to look after their own health and pay attention to their body and their mental health. Don't become a slave to 'I'm indispensable' thoughts, let others take some strain, ask for help, it doesn't mean you've failed.
Your story is so sad and I totally agree with your comments about paying attention to own needs. However, when you are looking after someone with a life-limiting disease it's difficult to put on the 'sensible hat'. Added to experience of that, in my case, the tragic loss of a baby in the family and the traumatic events suffered by my lovely daughter-in-law through being denied the healthcare she needed contributed largely, I firmly believe, to my PMR/GCA. I suppressed much of my own distress in order to be strong for them and not wishing to undermine her and my son's grief. This is deeply personal and it's a rare thing for me to bring up this subject but it is a release and relief to share. Bottling feelings up is disastrous: I know that now. There are many organisations where a listening ear is highly valuable and I urge anyone suffering in silence to avail themselves of these services.
❣️💐 How much we carry, silently, in order to be strong for our loved ones - such a distressing story, thank you for sharing it and find it alleviates at least some of your pain. It seems the gradual accumulation of layer upon layer of unspoken grief, anger and despair eventually becomes too much and we must speak about it; but we learn too late and all we can do is pass on our thoughts, difficult and deeply personal as they are, to those who may benefit here. Yes, 'a listening ear' was vital to my understanding of how to halt my deteriorating mental health and I was referred to the free Silver Cloud NHS 8-week online course which was invaluable. I learnt to be honest, especially with myself, about how I felt, instead of being in' I'm fine' mode.
Slowdown, I really appreciate your comments which resonate with me, eg., 'layer upon layer'. We often use an analogy here (courtesy of PMRpro, I believe) to demonstrate how unmanaged inflammation 'drips into a bucket until it eventually overflows'. A similar analogy may be used to describe the body and/or mind being overloaded with stressors until there is some kind of 'collapse'. Could that, in a perverse way, be some kind of safety valve?
We need to understand that it's fine to not be fine. 💐
In these uncertain,cash-strapped meter-watching times the lack of a safety valve in the guise of meaningful personal connections such as proper chin-wags with friends and family around a coffee table usually involving lots of beneficial laughter, exchanging of ideas, good old gossip and tearing our hair out over what the heck is happening, has quietly shuffled off-stage.
As sociable humans we need the comfort of being able to look towards a hopeful future in which we can trust. Instead we're undergoing a frenzy of slow/quick/quick/slow 'collapse' of just about everything.
.. doesn't seem to be going too well right now 🙄
However, with the treat of dark chocolate and a glass of red in the offing, hope springs eternal in this diverse, chatty, knowledgeable forum. x
I share your sentiments. Social contact and laughter lift the spirits and are precious gifts -and laughing is free which is a bonus! Some things we can't change but hope springs eternal!
Have a glass of wine for me. I'm not allowed due to medication but the chocolate I will enjoy! 😀
well my experience is that I was healthy, active and normal weight before lockdown. Used to swim 50 lengths twice a week and walk regularly as well as doing stretching exercises daily. Covid stopped the swimming and I did try to up the home exercise. As you can see by my pen name that is what the family call me. I therefore find it interesting that that stress from others may be a contributing factor in onset of PMR. When I first started suffering I tried to push myself more as I thought I could get rid of pains with exercise. However had to changed when severe stiffness meant I could barely dress myself. I have tried to keep up stretching exercises throughout and I believe this is how I’ve managed to regain strength especially in arms.
I realise that this horrible condition affects everyone in different ways. It’s therefore not surprising to find that medics give differing advice, so it’s best to find out what suits the individual rather than sticking to guidelines.
Good luck everyone on your journey. I find this group a tremendous help.
Thank you
I developed PMR after experiencing severe emotional stress over a two year long period waiting for my niece to die. She had a two year long battle with cancer and the journey was an emotionl coaster ride. I was fit and active and worked long hours in my own business. I was well supported in my work and was never susceptible to illnesses. I admit though that I did used to push myself physically, mentally and emotionally and often felt drained. I always rested well though and was always ble to recover well. I went down with PMR 8 months after my niece passed away. It was very unexpected and I never saw it coming.
We've all been here many times and I expect we will all be back again as there is no simple single answer. As things change, we question our condition and probably have a better handle on it than the "experts" who seem to feel they know best. My belief is that whether sport, caring or generally being the doer who everyone else goes to for help or advice, it is the pushing oneself beyond what the average person would consider a reasonable threshold of behaviour that triggers it. Some of us took this to an extreme relishing in our ability to do what others thought impossible, I am sure. A good friend told me he thought I had my humility gene removed at birth as I was convinced most people could work their way to a better condition whatever that was. What this has taught me is humility and acceptance. Some things are beyond our control and this is one such. How we progress through the condition is however the main challenge we face.
I can’t speak with any medical knowledge. I have GCA. Both of my parents lived well into their 80’s. My grandparents and many aunts and uncles lived to their 90’s. All were active and healthy mentally and physically. None had any kind of immune issues. At the time of my diagnosis I was very happy. I retired from my job. I was working a part time job which I loved. Life was good. Then wham! GCA. I can’t explain it. It’s just life
You’ve made me think, nallufl24. My family, parents and grandparents, also lived into their 80s and, having lived through 2 world wars with all the stress that must have cause never developed PMR. So what is it with our generation?
“….:,never developed PMR.”
More likely never diagnosed, many on here have said some their older relations complained of their “rheumatics” playing up and being bed bound.
Sound familiar?
you are probably right though none were ever bed bound and my maternal grandmother was still gardening to the last and my paternal one was still chasing a fella in the retirement home at 88!!!!!!!
My maternal grandmother was almost always sitting chair -which I assumed at young age was arthritis -may have been PMR -but lived well into her 80s, my mother lived to 93 and her sister to 99.
Both my grandfather and a great aunt almost certainly had PMR but it was never labelled as such, mostly I imagine as in the 1950s there was no recognised management of the symptoms since pred had only just been developed. They had "rheumatics" and "lumbago", could barely move when they got out of a chair and had the typical PMR waddle. But that was accepted as being normal aging.
I WILL grant you that the incidence of PMR does appear to be increasing - but that is just as much due to increased diagnosis as increased incidence.
The classification of PMR as a rare inflammatory disease may need to be re-classified for the reasons you give 🙂. That would be a good thing if it leads to faster diagnosis and treatment. Would people aged 45-50 years eventually be offered a newly developed vaccine? Would that age group be muttering, "Not another one!" 🙇♀️
Edited to read, "...a rare inflammatory disease in people younger than 50 years."
It isn't a rare disease amongst the elderly - it is the most common inflammatory disease to affect the elderly, particularly in northern Europe.
I’ve had the same thoughts as you many times. I was/am a health addict and somewhat extreme athlete. Tennis was my sport of choice until around age 30 when I took up running. By my 50s I had begun running marathons and ultramarathons with up to 80 training miles a week. (Also as mom, wife & full-time career.) Mid-50s went back to school to certify in kayaking, climbing, hiking, swift water rescue, and became an emergency medical technician. Went to Africa to set up a health clinic. Finally, suffered an achilles injury and retired from running but went back to school to become master gardener. In late 2019, I received my 2nd shingles vaccine, which made me deathly ill. PMR was diagnosed in March of 2020 and life has come to an abrupt halt. Having read through all the previous posts, I can see our ‘activities’ may be different but our passions all the same.
Well, I did have stress connected with supporting an elderly friend who has received a diagnosis of dementia. She has some extended family but they are quite distant (blood-wise) and mostly live abroad. I ended up running her care package, her house and garden and her life and health admin. I was effectively next of kin and had dozens of calls from and attended many meetings with health and social care professionals. I would relieve the carers whenever she had a fall and an ambulance had been called. My friend would have phases when she would call me several times a day.
My husband has a financial Power of Attorney for her but to save her money (he is able to charge her because he is a solicitor) I did a lot of the financial admin. The real pressure came from the extended family, one in particular who was always (unhelpfully) suggesting things and never accepted that her relative has dementia. There were some weeks when I was at her house every day, helping the gardener, dealing with the locksmith / carpet cleaner/ gas engineer / cleaner etc. As I was becoming (more) unwell I had to get the house ready for a live-in carer. For days I was tidying / clearing / decluttering, all whilst I could barely walk.
I’ll never know whether all this triggered or contributed to the development of my PMR. I have heard that there is a seasonal element to PMR and that there are ‘clusters’ of cases.
Almost four years ago, when I was fortunate to find this forum shortly after I had been diagnosed, I, too, noticed the high proportion of people who had been truly shocked by their diagnosis because they had been fit and well and had enjoyed physical exercise - walking, running, sailing etc.
I didn't write a post about it because I was a newcomer (and, incidentally, very much NOT a person who enjoyed walking, running, climbing or sailing).
As time has passed, my daily reading of this Forum has widened my view to include people whose bodies (and minds) are stressed for all kinds of reasons - some are/or were in 'high-powered' jobs, some have spent years caring for a sick, disabled, or neurodiverse, loved one, child, parent, or partner, some are the person in the family who 'manages' everything, and is proud to do so - the residence itself, the unceasing needs of the family, the children as they grow up, the children after they've grown up!, the relationships with the wider family, the 'big' family events.
Some of us spend a lifetime believing more strongly in our inadequacies than in our skills and worry constantly, unwittingly, and unnecessarily, about meeting what we think are people's expectations of us.
)))))))))))))))))))))))))))))))))))))))))
In the conversation I had with the rheumy after he had told me that I had PMR - which, of course, I had never heard of - I asked him if he knew what 'caused' PMR,, was it related to stress? He replied that the cause wasn't known but he would just tell me that he had had several patients who had suffered a bereavement shortly before PMR arrived.
So, LIVEORDIEHEREIAM, my 'belief' (based on absolutely no research) is that PMR is one more indication of how closely our minds/spirits and our bodies are interlinked and that the condition is probably caused by us making unreasonable demands, physical and/or mental, on our defence systems.
PS: Just recently I have been wondering if Olympic athletes develop PMR? Especially those who don't often get a medal, or break a record.
Does Skinnyjonny rank alongside such athletes?
healthunlocked.com/user/Ski...
My entire rheumy team support the view that stress can have a major effect on PMR/GCA. I have never been other than gently encouraged to reduce my (very) high dose of pred in the context of PMR. I wasn't made to feel inadequate or a failure for giving up on methotrexate.
i think he qualifies but as an exception . I'm sure we all wish for such a recovery but unfortunately most have to struggle with the condition much longer.
It was in response to the query whether olympic athletes get PMR!!!
understood. was he? He certainly looked a picture of good health a month or two ago when we met for lunch.
changing direction a little - apart from having Stills Disease since 17 and the associated AI conditions I have actually been very healthy otherwise, when everyone at work had a cold, I escaped, when the children had tummy bugs, I escaped and in the last ten years of working full time (pre covid) never had a day off ill. My thought on this is that the powers that be decided Stills was affliction enough and let me off other things. Idealistic I know. I hope sharing this with you doesn’t break my luck. Do I hear sardonic laughs from above or.... below
LIVEORDIEHEREIAM• in reply to
Oh! stillsdisease, you remind me of another recurring thought I've had about AI diseases in general. I'll post it as another thread so it will be more easily searched and found!
I don't know whether anyone has already reported on this piece of research, but an article from Science reports: How the Black Death changed our immune systems. science.org/content/article... So, maybe we are all descended from survivors?
Report of the report (if you see what I mean! at theguardian.com/society/202...
The BBC article covering subject was linked a few days ago - healthunlocked.com/pmrgcauk...
Sorry to duplicate - I missed it!
never apologise -better to be advised twice than not at all -and you wouldn’t have picked it up from previous post title.
Hi. I am 100% Finnish and was very healthy till I was 78 but then had a very stressful time and developed OA and RA in 2020 but Prednisolone an Methotrexate helped me 80% and I can live more or less normal life. I also believe in sauna and swimming (wild swimming) which I do regularly.
Hi, no I don't think it does lead to PMR in particular, but it has crossed my mind for a while that those of who played sports and were extremely fit at the time, may well suffer from joint problems in later life. I.e. for me that would be my OA. I think it is likely to a combination of many factors which, in the end, tip the immune system into confusion.
I'm not surprised that my body finally rebelled on me after everything it was subjected to. I also have had 9 years of financial stress. At extreme levels something gives. My only hope is that my system will finally forgive me and repair. At present it is getting worse and my legs don't want to keep me upright some of the time. Getting it looked into at present but it isn't nice. The latter is down partly to pred. but not wholly so. What a palaver.
in my experience of talking to people with PMR GCA or LVV I have found it is not a condition that affects people who are inactive and lead a sedentary lifestyle prior to diagnosis. That’s what hurts the most. We go through the grieving process of wanting back what we once had. An active fulfilling life before fatigue, loss of independence, brain fog, anxiety and in some cases depression.
Hi D2C. Been a bit morose recently. Bad company. Chaos and randomness are two words meaning much the same. I read this 40 years ago and was so inspired I wanted to move out there and meet the originators. It has informed me and motivated me since. Now reading Islands of Abandonment by Cal Flyn. Almost a metaphor for how my body is at present. It is about devastated landscapes left abandoned that nature is reclaiming by adaptation without any human interference. Unfortunately, not a condition I can give in to as I am rather dependant on medication at present. I don't ever refer to a deity for salvation, but it would be nice if miracles happened. Complexity is simply the knife edge between stasis (no change) like feudal England, and chaos, like the way our country is run at present. Complexity is the dynamic reality of coping with change. I t requires really competent people to understand what is happening and work with the flow with ability. You can't stand in front of the tide like King Canute and try to turn it back. It is better to accept it and set up a tidal flow generator to use the power trapped there. My body seems to be closing down at present and I am urgently referred to a neurologist after months of requesting same. After all, what do I know. I have nearly lost balance and the legs are collapsing unpredictably. Muscle waste isn't the whole story and it seems the nerve messaging isn't getting through fast enough. I am on 15 mg pred.atpresent and going down 10% soon. Waiting on bloods first. Due an MRI scan for legs soon and an ultrasound to discover if there is something wrong in abdominal region as bloat is extreme and causing other problems. Basically falling apart. Happy days.
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