Grief and despair can be overwhelming and lead to depression. What causes them is different for all but there are often common factors. They are however only a manifestation of the way our brains interpret events. Empathy or the lack of it determine how intensely one feels about any situation. In the same way our brain interprets signals from our senses for sight, sound, taste, touch and pain, which don't exist until we translate these, so with emotions. Because every ones brain is different to another persons none of us sense or feel exactly what another experiences. Empathy allows us to relate to others and express our sympathy but we can never really know what anyone is feeling at any point. We use the term pain but for some this manifests as discomfort whilst others are wishing the organ/limb be removed. Grief is a form of mental pain and commensurate to physical pain in its disabling capability and this is what fascinates me. We all know of someone who says just pull yourself together and we all know how near to impossible this is for some. It is however true that the answer lies within our own ability to reprogram our brain to see events in a different light. Whether it is through meditation, study under a guru or some other mechanism there is an underlying reality which is physical. Whether drug or mentally induced reduction of felt pain a broken bone or worn out joint will continue to do damage until fixed regardless of how much pain we feel. Likewise with mental pain, time and considerate counselling will be needed to alleviate the depression. We are often asked to express our pain on a 1-10 scale but I contend that this is not really relevant given the reasoning above. Admittedly it may be a10 to some and a 1 to others but if a Dr. is prescribing on this basis it won't address the physical reality. If drugs are prescribed on a persons perception of pain then some will be under dosed whilst others will be overdosed. Until someone improves this I guess it will continue as at present with informed guesswork.
Thinking in Circles on Treatment and Medication - PMRGCAuk
Thinking in Circles on Treatment and Medication
Interesting, thank you. It's important to connect to our inner truth in any situation.
Thank you Blossom20. I was hoping for some robust discussion from this bright community. I get philosophical at times. Probably having too much time to reflect with this condition.
People have liked it - maybe the way it is written is more a statement than a question inviting discussion?
Cheers PMRpro. Probably right. I have thought a lot about the term pain. Given my sport and the level attained I trained my body to tolerate pain at a level most wouldn't. Despite the state I finally ended up in I still worked through the various manifestations until final diagnosis. I'm sure my initial dosage was low due to my responses to the GP on how much pain I felt.It's not an exact science for sure.
Not just that - it's a fight I've had for months over pain. And it was my rheumy who understood how much it was disabling me. Not the Pain Clinic who don't use the silly numbers. One rheumy here did a study about why patients quote pain figures that don't match their assessment of the disease activity. Taken on its own a pain might well be a 5. But in the context of it being always there, stopping you doing a certain movement every single time you try it, then it becomes a 9. Even a 10.
just so. It's why people walk with stoops or favour one limb over the other. In this way the muscles get retrained, sometimes permanently Who wants to aggravate the body when a certain operation or movement makes the pain worse. How to measure that effect is a worthy candidate for further study. It's so subjective but needs an objective way to determine appropriate treatment.
A very perceptive post Cycli. I can add to that, our awareness of heat. At different stages of my journey I have felt cold on a warm day and hot on a cool day. All very confusing!,
Thank you Artandpoetry. We are essentially islands and all need to work at communicating our states . We are often confused at the signals our bodies send and the drugs we take don't help with clarity. Since the medical profession admit their ignorance as to the cause and even what PMR and GCA are specifically it's inevitably left to us to interpret . I wish they would respect that more.
Yes. Have you got The Mind Illuminated by John Yates - it integrates meditation techniques with neuroscience. It's very thorough about the ins and outs of meditation and mind control. X
I’ve often thought it best to describe pain (discomfort) in the context of functional abilities. What’s your current pain level? 1-2…but I can’t walk, I can’t put my socks on, can barely move after a long drive etc…provides a better picture.
When I’m asked by a medic about symptoms I try to describe them it in real life contextual situations, are you are spot on about how subjective it is!
I'm not infallible, unlike the Pope, however I like to think that I have a better grip on what's happening to me than most professional medics. Looks like I'll have to sort my own recovery plan when the pred. is low enough.
Thank you for opening up this discussion Cycli. The problem is that we go to the rheumies expecting them to have answers which they don't because we are complex beings - we carry emotions, stress, the effects of our environment physically ans socially, and our genetic inheritance. It is a truism in the cancer world that each person's cancer is unique to them. So is our PMR. The longer I have this "condition" the more I feel dissociated from the diagnosis as a purely medical "problem" and feel the pull to explore deep rooted emotional and spiritual issues. And I am finding this approach remarkably helpful.
My pleasure Alchemy8. Since we are taking many different drugs which all have interactions with each other and our condition is believed to be catalysed by stress I agree that the mind and its balance is crucial to resolving our state. We also need understanding and competent medics to prescribe only those medications deemed necessary and not just in case.
Absolutely re the prescriptions. I have refused biophosphates and methotrexate and sensed disapproval from the “experts”; along with the endless injections we are increasingly offered. This is not to say that prednisolone did not get me out of a painful hole but like virtually everyone on this site we are struggling now to get out of another!
I have been listening to a very interesting series of Reith lectures from 1980/81 delivered by a medical professor on medicine and its role in society. It rather reminds me of the T S Eliot quote:” The whole Earth is our hospital/Which if we do well/We shall die of the absolute paternal care /That surrounds us but prevents us everywhere “. Which goes back to taking a proactive role with our health that goes deeper than the physical.
Just wanted to add that I have also refused bisphosphonates and methotrexate and have had undoubted disapproval from the 'experts', unfortunately. Really gets under my skin!
hi I would be really interested to discover what techniques /methods people have used to help them to as you described “the answer lies within our own ability to reprogram our brain to see events in a different light”, you can feel quite lost and alone with finding ways to deal with the grief of loss and pain that health changes bring, and have made note of the illuminated mind book although sadly not available from our library ,
You could start a thread about this? I use loads of approaches, but the main one is increasing energy in the chakras for each of their specific functions. The heart centre is very powerful for tackling low mood; flowing love, light, compassion and colours through this chakra can bring a feeling of happiness. Another good approach for feeling low (when there is no specific reason) are the gratitude exercises. It's all basically about raising energy. Also the meditation techniques to still the mind.
And of course feeling sad and hopeless, lying on the sofa watching box sets and wishing I could eat more cake. 🫤
No need to start another thread. Stay on this one people. As for reprogramming maxistar I have always kept my target goals and hopes in the forefront of my thoughts. I don't meditate as such because for me it has never been necessary. We are all wired differently and in my case I can visualise all the steps necessary to achieve each goal and work progressively towards that however long. This keeps my brain active and positive. They are not just selfish goals and usually involve elements which benefit others so very satisfying when accomplished. At present my physical inability to complete what was started before the PMR and GCA did their worst is causing me to shift my focus in a selfish way to meet my current health needs. At the same time I still work through the necessary steps for when I improve and keep as active as I can doing smaller tasks that need doing. That's my form of meditation.
It is as you say quite an individual journey , I am learning to focus on me, to give myself the time , the compassion , the focus which my body and soul needs, and realising that it’s not a selfish thing to do, although it can feel like it as i realise how I have struggled previously to give myself the support and focus I needed , to manage living with a chronic illness and the health symptoms and issues that I know have . My diagnosis four years ago put me in a lonely place , not understanding me , my body and I am so grateful for this group, the library with the self help books,and novels that make you feel you are not on your own, it’s a big slow journey , in a fast paced world , im now the tortoise than the hare and after being a hare before PMR, I’m realising that being a tortoise is ok ,
It would seem that nearly all on this forum are achievers and doers. For example I have never sought or ever needed to ask for help. I've always been the solution provider.I still have that mindset but I am not volunteering any more while I have these 2 conditions.
I was alerted to a 2yr ago post by a like and it reminded me of how fast time goes and how we miss some who became friends. this is the thread and I understand Constance may no longer be with us. healthunlocked.com/pmrgcauk....
It was a good exchange and reminded me of how we have to adapt from what we all used to do.
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