Dan here, a 68 year old male living in East central Florida, USA. Some background: I've had 2 significant bouts with PMR/RS3PE, one at 52, and another at 64 years, each lasting about 1.5 years, followed by remission with occasional minor symptoms. I have become increasingly socially isolated, self imposed, and cognitively chosen. The reasons are not germane to this discussion, but I found something that might be significant for us all. I have not heard of this before. In consideration of the health effects of my self imposed social isolation, I began basic research in Wikipedia, under "**Social Isolation**" I hope, if you research this on your Wikipedia, you can find it as well. I found the following passage in the text, without pre or post explanation, and I need help in understanding what it means, and if this (my) isolation may have "this" as a causal factor. *Research by Cole and colleagues showed that perceived social isolation is associated with gene expression — specifically, the under-expression of genes bearing anti-inflammatory glucocorticoid response elements and over-expression of genes bearing response elements for pro-inflammatory NF-κB/Rel transcription factors.[3] This finding is paralleled by decreased lymphocyte sensitivity to physiological regulation by the hypothalamic pituitary adrenocortical (HPA) axis in lonely individuals, which together with evidence of increased activity of the HPA axis, suggests the development of glucocorticoid resistance in chronically lonely individuals* I hope, if you research this on Wikipedia, you can find it as well. I think this smart crowd here can help me make sense of this, and help me sort it out. I'm not exactly sure what this is saying, but they are sure using a lot of words that ping on PMR causal factors. Thank you for your review, and best to you all, this season. Dan
This is interesting, Danrower. I can follow it but I don't think I could explain it in the way Eileen will. The Hypothalamus controls our interest in activities amongst other things so this may explain the lack of interest and social isolation. When you say 'self imposed' do you mean that you want this? Reading between the lines I wonder if this is the case or has it become a gradual process because of lack of energy, pain etc when PMR has been problematic. I note that you say the reasons are not germane to this discussion so realise there may well be other factors. It's good to see you back on the forum more recently though I hope it is not an indication that your health is not so good. We await freezing rain with trepidation here in Scotland which is not the norm for us so I am heading out early before it arrives. Best wishes.
Hum - I'm afraid psychology is a closed book to me!!!! That statement just makes my brain hurt so I am very touched that Silver had faith I can explain!!!
Does this wiki help? https://en.wikipedia.org/wiki/Glucocorticoid
I THINK your quote is possibly providing an explanation for several linked situations - inflammatory conditions, mood changes and so on which may also be linked with people becoming socially isolated. It isn't just the physical obstacles of pain and stiffness or other medical problems - there is a genetically related reason which is the basis for a variety of states.
In some people there are fewer receptors for cytokines that are anti-inflammatory or corticosteroids to attach to - and more that pro-inflammatory cytokines are able to occupy. That encourages the development of inflammation of various sorts (as in, where leading to different a/i disorders). It is also now known there are links for certain types of mood alteration with inflammation - depression for example. At the same time there is reduced sensitivity of the lymphoctes (one sort of white cell) to the natural corticosteroids and that allows more inflammation too. I'm not sure whether they are also suggesting that this last bit extends to the way corticosteroids work as antiinflammatories - i.e. that in chronically lonely people they may not work as well and they may have a worse or longer patient journey as a result.
I've certainly noted that there is a degree of lack of motivation associated with PMR in many people - a lot of people have mentioned it over the years. And that may be associated with certain mental health changes. I don't know what sort of social isolation is involved - are those of us with few close friends "in real" but active on social forums at less at "risk"? It is certainly easy to just not be bothered to see someone f2f when it is warm and comfortable at home and seeing others requires effort that often is maybe a bit much. Loneliness is becoming recognised as a major problem for singles of any age so it isn't just that older people are less social media savvy in general. But when we do form a community like the forums there seems to be a greater cohesion than may be the case for other younger groups - I see it here to some extent but it is very apparent on the other 2 forums where there are smaller groups who really have developed quite close relationships online.
Certainly social isolation is a factor. I was desperately lonely when my children were all in school, despite doing what I could as a volunteer. Work saved my life. I always dreaded retirement as I felt I'd be back in the same space, and that did indeed come to pass, again, despite my efforts to become involved in lots of activities. Coincidentally (?) a few months before retirement I appear to have experienced the beginnings of PMR symptoms. But it wasn't until I'd been on pred for several months, and this would be over a year after retirement as I was undiagnosed for over a year, that I began to find it too much effort to get out and about and so forth. This is still the case. I find if I'm alone all day I find it really difficult to talk to hubby when he gets home. Just want to stay in my silent shell. So I do my best to get out every day if I can, but often it's just a walk where I speak to no one.
My read on the article is it seemed to imply that the chemical interactions of our inflammatory responses, specifically glucocorticoid response elements, may also have significant behavioral component, resulting in social isolation. Therefore, social isolation might not only be a result of the painful and fatigue inflammatory effects of PMR, but also a direct effect of the biochemistry which results in PMR.
To answer your question about "self imposed,": I have misanthropic tendencies, which manifest now in self imposed isolation. That has not been the case in my entire life, much more pronounced since my second PMR bout at 64. Although I have always been highly critical of The Human Endeavor. Our audacity astounds me.
That passage may suggest a chemical root to my self isolation, and answer to my behavior. I post this topic to see if there is some consistency of this among my fellow PMR travelers.
Additionally, I take 1 mg of pred, and feel pretty well, notwithstanding the doc's recommendation for knee replacement, which I am procrastinating.
Yikes on the weather front, Freezing Rain in Scotland! Yikes. Sorry.
Thanks, Silver.
Dan
I have faith in you, Eileen, and it has not been misplaced. I'm sitting cosy but some of the family are out and the roads are a nightmare. The forecast is as they indicated and bang on time. I have a lovely very spicey roast in the oven and the veg all ready to cook. just right for the weather.
Thanks, Eileen, and that makes sense. If this inflammatory chemistry is a strong behavioral influencer, it speaks volumes to to issue of free choice or predestined results. After believing, for most of my life that I was the master of my own results, I am beginning to believe that I have been on a lead sled! HA. Jokes on me!
This reticence for social interaction, I thought till now it was a result of pain, fatigue, age, inflammation. Is there a direct behavioral result of isolation because of our shared biochemical imbalance?
Me beginning to think so.
I also go on the daily walk with my dogs.
Thanks, Anhaga
Dan
I know at the beginning of PMR I didn't feel like making an effort and just wanted to be indoors partly due to the pain and fatigue. I suspect there is a direct effect of the biochemistry. I am normally an optimist but even I have felt a bit down and flat but I put it down to the steroids. Perhaps I have been wrong and it's been the PMR. I had ME about 30 years ago and it had a similar effect though I forced myself to go to work but struggled and was done when I got home. Our power is still on though there have been warnings out. I don't think we will have anything like the your country but thank you for your kind words.
I suspect there might be. Though with the right people I'm fine and can have a whale of a time - I never did suffer fools gladly, that is magnified by a million or five with PMR!!!!
Nat has just driven from Rosyth to Stirling for an NHS night out. Said it was a bit hairy by the time she got there pretty early, no snow, just horizontal rain. No idea how many got there, she IS staying the night!
" am normally an optimist but even I have felt a bit down and flat but I put it down to the steroids. Perhaps I have been wrong and it's been the PMR."
Or even more likely the B-word. It is the source of great distress to me. Thank goodness I'm here - but what if Italy decides to chuck us out as persons of a 3rd country?
Hmm - not sure when I realised any sense of control was an illusion. Was long before PMR though I think.
OH is struggling to control his computer - no sense of control there...
Glad she's staying the night as it wouldn't be much fun driving later. At least she can relax and enjoy her night out.
Recognise that one, Eileen. I am much more likely to say what I think though that may also come with age. Actually, no, it was certainly around from aged 13.
Given her predilection for gin it's probably a shame she isn't staying Sunday night too! But she'll be working Monday...
Less likely to have a hangover if she has to be back for work!! It's turned to very slippery slush here and there have been some accidents on the A9 North. No surprise there.
You could be right. It is so depressing and all that money could have been ploughed in to the NHS. It'll be a different budget, of course. Don't get me started, Eileen. It's very concerning as we have some wonderful workers from the EU and they have left and others face uncertainty too. Is your position in Italy likely to be precarious? I realise there is uncertainty for you. I wondered how health care would work but am I correct in thinking you will have some private health insurance? It's a mess to put it politely.
No - I hate the A9...
:)