I'm finding it so helpful to read all your posts and to learn from everyone's experience of living with this condition. Particularly as its not widely known and most people (including me!!) had never heard of it before my GP suggested it in Jan and rheumatologist diagnosed this month.
I've also noticed I seem to be waking up earlier- hence writing this at 5.30 on a Saturday morning!! Its not the pain waking me (as it was before diagnosis) but wondered if its the medication or condition or both?!
I can see from other comments that managing stress and not overdoing it seems to be an important factor in not triggering relapses etc...Coincidentally Ive just completed an 8 week mindfulness course and think continuing regular meditation is going to help so much as part of the day to day living.
I'm very interested in peoples experience of factors that cause it at the beginning? Does it seem to be just 'one of those things' or are there similarities in peoples life styles before onset?
The reason for asking is that I work as a Counsellor (for past 10 years) and consider myself to be very self aware. I am always very interested to understand contributory factors. Im only 51 and consider myself to have a fairly healthyish lifestyle. Prior to onset I had done yoga for the previous 3 years, have a dog so walk daily, have a good work life balance and understand the importance of self care particularly with the job I do. I also believe and from my experience of working with clients that alot of emotional stuff is held in the body and the mind/body connection.
As I said I'm not sure whether this condition is very random or whether my work/other factors maybe affecting me more than I had appreciated. In the past (and all my life!) I have always been the strong, capable one with responsibilities from an early age . I'm finding it a whole new experience allowing people to be there for me and actually quite enjoying some of that!!
Would be really interested to hear your thoughts and experiences? Thanks so much in advance.
Feeling tired now, may go back to bed!!
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lucy65
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I think you have answered your own question in the last few words
In the past (and all my life!) I have always been the strong, capable one with responsibilities from an early age .
I like you and many others for one reason or another have been in the same position .
I to have looked after my self mind, body and spirit
Practice Rekie ,Tia Chi and use meditation I have a job in some ways like yours where I am sorting others problems for them . Both at work and in family life .
I believe the early waking is to do with steroids others will explain why that happens
At the beginning I had 4 months off work as the fatigue was so bad I could hardly move.
I would say not only overdoing things to prevent flares occurring is not the only reason we need to take things easy. its also to let the steroids take control of the inflammation we have in our bodies.
Sorry you have PMR but welcome to this site.
I was diagnosed in Aug 15 so early days for me I am 62.
Take reduction very slow when you start their no medals for getting off Preds quickly.
Thank you Rose. Yes I think you are right that I've answered my own question! But maybe not realising that I was being affected as I 'thought' I was doing enough of the self care stuff- obviously not! Having PMR is now giving me the opportunity to make sure I look after myself even more.
From hearing others comments I'm also not prioritising the Preds reductions. I'm very grateful to have all this valuable information which is far more useful than GP advice who tend to refer to NHS guidelines rather than real life living with the condition. Having said that my GP was very quick in arranging blood tests from my first visit and then referral to rheumatologist so he did take it seriously from the start. I'm very glad to be part of this supportive community sharing experiences, thank you again for your comments. I'm sure we will be in touch again.
I have read that it is twenty five per cent genetic and seventy five per cent environment. A lot of people believe stress brings it on. Some people think that having a flu shot triggers it. Who knows! If you do have an auto immune disease it seems you have more chance of getting another one than if you have not got one, which does indicate that you are more prone.
Lucy, unfortunately Pred can interfere with our sleep patterns but you will find that this improves as you reduce to the lower doses.
In the absence of a known cause for PMR and/or GCA, many patients come up with their own ideas with some citing a bout of flu just before diagnosis, others on starting statins, others following surgery, yet others saying that a parent had it, etc etc, but the overriding theme amongst many seems to be one of stress leading up to diagnosis. In your case, perhaps there is a possibility that the "emotional stuff" you say you are dealing with in your work could be affecting you subconsciously?
Coincidentally, I have just arranged for a guest speaker to talk on "Mindfulness" at the next meeting of our PMRGCA support group, so may be able to compare notes with you in the future! Certainly, what you have learned from the course may prove helpful for you as you face the day-to-day challenges of living with PMR - I do hope so and wish you well.
Thank you for your comments. Its really helpful to hear others experiences and helps me try to make sense of it for myself - but at the same time trying to 'get out of my head' and listening more to my body - which I now realise I have to do with this condition! Would definitely be happy to compare notes re Mindfulness! Even though I was quite familiar with meditation before I didn't have a regular practice and have learned alot from the 8 weeks. Feel free to contact me again.
Good Morning Celtic..and a Happy Peaceful Easter Day to all PMR/GCA sufferers on this Forum ..I am wondering if this Mindfulness is the same as Positiveness as since having Bowen Therapy Treatment I have learnt with Deep Breathing and self Meditating to get around my pain this way,which must be a form of mindfulness .As you know Celtic I have just had 2 days in bed with a Flare-up that hit like a bolt out of the blue .I have had to go up to 15.05mg steroid from 13.05. I am feeling much better and I'm hoping to go out to a Family Meal today . I will be very interested at the next meeting to see what your speaker has to say . Even my Partner agrees that this Flare has been a Bad one, he wasn't with me in the early days of PMR, and now realises you can't underestimate what this condition can do. Lol trish 29
64 million dollar question. I think we'd all like to know what triggers PMR GCA. I think stress is certainly a contributory factor, lots of people on this forum seem to have had a lot of stress prior to diagnosis. Whether from illnesses, operation, bereavement, caring for close family members, work et al. Plus, if you're also a person who is normally very strong mentally, and therefore is the one who gives the advice, is the rock of the family - something has to give eventually , and that's your auto immune system. Who knows!
Your disrupted sleep patterns are due to Pred, but as you reduce you should get back to normal.
Rest while you can, and learn to pace yourself, gentle exercise will help, and when you start reducing do it slowly. This illness takes as long as it takes, so no point in trying to rush it along. If you start off with that thought in the back of your mind, and don't let the doctors pressure you to get off Pred too quickly you'll be fine.
Thank you for your comments. I agree with all of that. Specifically since May of last year my Dad whose 82 and not in good physical health lives nearer me in Sheltered housing and although I'm not his carer (my sister lives closer) he does take up more of my time/thoughts etc. Interestingly when I first got the pain I looked similar to him in how I was moving around/getting out the chair etc! Also the first signs I felt were around Xmas with him and the whole family round, plus on top of my life time of being the strong one and my work etc etc Yes the clues definitely seem to be there! Thank you again for your helpful advice and thoughts.
"In the past (and all my life!) I have always been the strong, capable one with responsibilities from an early age ."
That is probably about the most common commonality - and whether that is anything to do with the cause or merely because it therefore seems to affect us more than the people who didn't do a lot I have no idea, nor does anyone else!
There is no single identifiable trigger for PMR - all sorts of things have been suggested but none that applies to everyone. What probably happens is that various things that affect the immune system - environmental, chemical, emotional, physical - happen to us and each leaves a dent until something happens that is the final straw that breaks the immune system's back and it goes haywire. PMR is just the name for what we see/feel on the surface and there is a real iceberg in the form of the autoimmune disorder which is attacking various parts of our bodies underneath.
The pred is managing many of the symptoms but does nothing for the real illness so the other things going on are doing just that - still going on. They have to be managed by us adapting our lifestyle and activites and learning what we can do and what we can't. PMR can mess up sleep patterns - so can pred. PMR can make you bad tempered and irritable - so can pred. Resting during the day, before you get too fatigued, can actually give you more useful time in the day - the evening is liveable rather than you sitting in a bad temper and unable to do any more. Getting to bed early or having that siesta so you don't get overtired may well give you a better night's sleep.
And a theory I have: the new batch of inflammatory substances that cause the trouble in PMR is shed in the body about 4.30am. I often found I woke about then or, before pred, a bit later as the inflammation was topped up and the pain started. That could account for the early waking.
Thank you for your comments and advice. I like your analogy of the iceberg and I think thats very true. As you say the important thing is to adapt our lifestyle accordingly. I'm learning so much already from this experience. Although I 'thought' I was good at the self care/work life balance stuff, perhaps emotionally I was still giving to everyone and not allowing others to be there for me. I'm now really starting to understand that. Thank you again and for the reduction info you shared yesterday. I'm going to use that approach starting from Monday with my first 1 mg reduction down to 14mg. I've been on 15mg for 3 weeks. The GPs advice was to drop to 12. Definitely prefer the sound of the phased approach rather than dropping so much and likely to have to jump back up again!
Definitely! At the beginning it was a race for me as I really didn't want to take them! I know different now and not having the pain is more of a priority to getting off them, plus all the other life style changes.
Hello lucy 65. I was interested to read your post about causes of PMR, since many seem to report Stress as a possible contributory factor.
From personal experience, and from studying Counselling Psychology at Uni, I'm in no doubt that Emotional Stress and Strain / Conflict are often at least a part of the equation in people's susceptibility to illnesses like PMR. Prior to the onset of my (eventually diagnosed) PMR, I'd been overdoing it physically ('action man!') in between a demanding few months of professional work which involved a lot of international travel. On reflection, I was exhausted mentally and physically, but not acknowledging it in myself.. typical!
I think what you say about being (or trying to be?) 'strong and capable' is key here: how many of us project this side of ourselves to the world at the same time as privately wanting to 'get off the ride'? Maybe it's a societal thing ('achievement'), a case of 'needs must', or just a (sometimes healthy!) denial of our vulnerabilities: or all of these combined?! I once heard the analogy 'The stronger the Oak tree, the harder it falls'.
Of course, PMR itself confronts our self-concept of health and capability at a number of levels. First, we have the shock of having to hand ourselves over to a sudden-onset, chronic, initially scary, mysterious and crippling illness with an uncertain recovery path and the possibility of something more serious (GCA). And then, little or no option but to follow an often precarious course of treatment for the symptoms with its own, numerous risks and hazards, physically and emotionally. No wonder the physical and psychological journey of PMR is a challenging one!
I agree with you about the mind / body connection: and, for me (as for many), accepting the situation and lowering self-expectations / accepting help from others can be useful in coping from day to day. But that's the psychological challenge for those of us who consider ourselves 'strong and capable'!
Due to the relative lack of research into what seems to be a myriad of possible contributory factors in PMR (for various reasons), it's hard to prove the mind / body connection, but I have no doubt that it plays a part.
Thank you Mark B, I appreciate hearing about your experience and can relate to all your comments. I'm learning so much about me through having this condition! I already thought I was pretty self aware, whilst always being open to learning about myself. The bit I clearly still need to learn and understand is my continued need to be the strong one. My work as a counsellor reinforces that, however, I'm also very much aware of that position within my family dynamics - parents/siblings. Through the experience of having this condition I'm having to look at how much I've allowed myself to be available emotionally for everyone. Now I need to allow others to be there for me too and to be fair, it seems that they are wanting to be there for me too, and I need to allow them to be. Even being part of this group is refreshing for me to seek support from others rather than me being the one giving it. I can identify with your analogy of the oak tree!
Particularly since reading peoples comments from this post I'm realising the importance of making adjustments. I'm taking this 4 day weekend to do very little and not seeing anyone (outside of huband/daughter, currently home from Uni) Maybe thats another thing 'in the mix' - our only daughter went to Uni in September! Although I actually thought I had adjusted OK to that - maybe another thing I'd suppressed along with all the other stuff!!!
Lucy, I think I understand what you are saying. Talking about how you are the "strong, capable" one made me think of an incident that happened to me quite a long time ago, and I wonder now if I should have paid more attention and done something about it. (Should start by saying that I've never seen myself as strong or capable, and think I blame myself for not being perfect!) Had been struggling through a rather dark time in midlife and started getting together with a small group of women of similar or slightly younger age - we all professed to be writers. At one meeting one of my friends brought me a cup of tea - I'd been expecting to fetch my own. I was so touched by this gesture of kindness I felt myself ready to cry, and realized that it seemed to be the first time in years someone had spontaneously done something unasked for and kind for me. A silly little thing, but maybe indicative of the kind of stress which when added to other events could lead to a health crisis.
Thank you HeronNS. As you say maybe that incident is very relevant and is 'very' similar to something I experienced just a couple of months ago. In between stage of GP thinking it was PMR and awaiting referral to specialist. But still in alot of pain as I was adamant I wouldn't be taking steroids!! (that bit of course has since changed as I now know they are preferable to the restricted movement and pain!)
Anyway..... it was at the end of a Laughter yoga group - lovely group of people which ended with a lying down meditation. I found myself lying next to a lovely lady who noticed I hadnt seemed myself. I briefly mentioned about the PMR diagnosis and she told me her husband had also had it. Blankets were then handed around if wanted and this lovely lady proceeded to get a blanket and i lay there as I allowed her to cover me with the blanket. I too became very emotional and actually ended up sobbing deeply at the realisation of how lovely it was to allow her to do that but also how 'usually' I would have felt very awkward to let someone look after me. I guess that moment reinforces even more that its letting go of my need to be 'strong' for everyone else that I need to focus on. Thank you for sharing your experience and reminding me again of how relevant this is to my original question.
Thank you Greensleeves. You were the same age as my diagnosis. Interestingly when I got to my 50th I was feeling so good about feeling so well and being 50. Different story this year as my 51st was at beginning of Feb and had the pain but not quite had confirmed diagnosis then and hadn't started the steroids.
I'm sorry to hear that it is still ongoing for you and hope that you are able to enjoy your 50's. I'm definitely planning to! Like you I'm really appreciating the support on here and very grateful to have it at this early stage. Ive learned so much already but the immediate thing for me is to make adjustments for my own well being and not always put others first. I hope you are also able to find a way of doing that too alongside your ongoing caring for others. I will also say back to you what you said to me ......'Take good care and treat yourself well'
Hi Greensleeves glad you mentioned about your sweating, in Oct 2014 went to Dr with the most awful sweating my hair would be dripping wet sweat would run down my face, didn't think anything about it at the time but my jaw hurt whilst chewing, couldn't brush my hair as scalp was so painful and lifting arms up to comb hair was so painful, Dr took blood test but he said they had come back ok so didn't know what was causing it, l told him I just was so tired and kept crying so he upped my antidepressants, he said I was depressed, just put up with it, then in April 2015 couldn't get out of bed one morning legs so stiff and again the next day went to see a different Dr whom after loads of blood tests sent me to a Rheumatolagist, feel he isn't very good first he thought I had vasculitis then it might be PMR inflammation levels were 47 put me on steroids, now he doesn't know what I have got even though inflammation levels are still up, it's nearly a year now but still haven't got any nearer really finding out what is really wrong with me, sorry about the long essay but do you think that was one of your first signs of PMS this excessive sweating still happening now but no one else has mentioned that. Val.
Hi Val , I am sorry you've been through an awful time .
This excessive sweating is still happening but now I believe it's due to steroids and the menopause.
I'm not sure and don't know enough about PMR to define it .
Four years later and I'd say the exhaustion and sweating are the worst symptoms unless I get a flare and then it's the above accompanied with pain , stiffness and flu feelings .
My bloods have always been normal too which has caused my GP to have little sympathy.
I think if the steroids have helped you with pain then it's PMR. The sweating goes hand in hand .
I can't even get my hair blow dried well because of my soaking wet scalp .
It's debilitating.
Take care Val, hopefully PMR Pro or Celtic will have some answers . xx
Thank you for your reply I'm 67 so went through the menopause years ago and the sweating started before steroids, oh well might get an answer to it all one day, I really don't think some Drs realise what pain we are all in sometimes, I did see a very good Rheumatolagist once when mine was on holiday had been in pain for 5mths by then, mine just kept saying loose some weight and eat a healthy diet made me feel I was making it all up, but this new Rhuemy did all these things with my arms, shoulders hands and wrists said it was PMR which my mum had, and started me on 20mg of steroids with in 3days I was pain free, when I went back a month later had to see my old Rhuemy he said I had to start reducing straight away, all the pain came back so he put steroids back up but this time not all the pain went away, so now he said I haven't got PMR, just feel like screaming sometimes with these Drs, we are supposed not to get stressed but think some Drs just give you stress, sorry again about the moan just feeling a bit down today with it all, hope you can sort all of your problems out and start feeling better your self, this site is lovely knowing that there are other people we can relate to with all the pain and not being made to feel it's all in the head. Val.
It's good to see a few people here talking about the emotional side of the PMR equation as well as the medical one. PMR is physically exhausting and, by default, mentally and emotionally too. No wonder so many of us get depressed as a result!
As for learning not to be 'strong' / admitting to it, that's a challenge in itself (so, it's not just a 'man' thing!). But I'm sure this allows others close to us to access our previously hidden or un-acknowledged vulnerabilities and return the emotional and practical support we typically give them. You could argue that, in a sense, it shows strength and generosity to admit to, and share our vulnerabilities with our nearest and dearest, rather than to hide them? It 'let's them in', so to speak.
For me (previously 'action man'), one of the most difficult things to say to others was 'I'm sorry, I'm just feeling too exhausted to..' do what I would normally do without blinking (e.g. wash 3 family cars at once, decorating / DIY, even socialising). But it's surprising how people return this honesty with compassion and kindness: and perhaps they saw the warning signs in us before we did!
As a few of you suggest (and as I have learned), adversity can make even the most self-aware of us just that little bit more aware that we aren't in control of everything that happens to us on the Journey. Hey ho..! Either way, I'm planning to get back to full 'action man' status eventually - the thought of / belief in being 'well' again is a great motivator for me. But like the tortoise and the hare, all in good time: and I think this is the message for all of us with PMR.
Now, where's that car-wash sponge? Maybe I'll do just one car today...
Mark B Yes, again I can relate with so much of what you say. In recent years I thought I understood about the importance of and allowing ourselves to be vulnerable. I thought I had been doing that more with close friends, but now realising I still haven't got the balance right.
I also consider myself to have a positive outlook on life (are you familiar with Hay House authors/speakers?) and believe that our thoughts have a big impact on how we feel etc.
Possibly people with a positive/striving attitude maybe more at risk from this condition as we always just carry on.......which in someways can be helpful in life, but as in this case...........not always!! Or maybe this is the only way that we will actually stop and listen to our bodies instead of carrying on regardless. Interestingly before this I never experienced much physical pain, I think my body was very well practiced at suppressing any physical/emotional pain that may have tried to be heard!
In the recent 8 week Mindfulness course I did (wasn't planned to coincide with my diagnosis but became perfect timing!) I've learned the importance of moving from a 'driven-doing' mode to 'being', which is far less about 'striving' to do things, plus the accepting things as they are etc.
So much to think about, but also trying not to 'over think' as that is definitely part of my problem too!
Great to meet so many like minded people on here!
Hope you manage to stop cleaning after just one car today!!
Hi lucy65, I think we're on the same wavelength in many ways!
You mention a couple of things that resonate with me on my 'journey'.
First, many years ago when suffering from regular lower-back injuries (usually after trying to do heroics on the squash court or in the garden!), I briefly studied the Alexander Technique at the same time as having physiotherapy. As well as AT helping me with my posture, I learned the phrase 'End Gaining': all about the mind seeking quick outcomes (with all of the consequences) rather being Mindful and thinking about the best process to achieve them or accepting the status quo. This can apply as much to planning big things in life as to getting out of a chair easily and comfortably. I'm sure that in a busy professional life (and more prevalent in more 'driven' personality types), end-gaining is a hazard for many of us.
As for 'being' as opposed to 'doing': I don't share this publicly but, many years ago (co-incidentally (?), at roughly the same time as the back problems), I was in psychotherapy following a catastrophic series of life events, massive uncertainty around the future due to a major cardiac health scare (from which I recovered fully), and a resulting period of Depression despite being 'well' on the surface. During the course of therapy, my (brilliant) person-centred therapist encouraged me to accept that many of the things that had happened weren't within my control, I couldn't change them, and to allow myself to 'Be' rather than 'Do' whilst I was re-grouping in my personal and professional life. For 'action man' and an arch 'end-gainer' this wasn't easy!
But the phrases 'being', 'accepting', and 'trust that you / things will get better' stuck in my mind, and I am fortunate to have come through a couple of awful periods in life relatively unscathed (unlike some, sadly). These phrases still apply, especially in dealing with PMR.
As a Business Training and Behavioural Change consultant (and lifelong psychology student!) I do a lot of work with a simple, not too rigid or prescriptive Behavioural Styles model which encourages professionals and others to reflect on the pros and cons of their Style 'tendencies' based on their broad Personality Type (as far as can be reasonably evaluated - this is another subject altogether..). To pick up on your point, yes, for (more or very )'Driven / ambitious / striving / controlling' (or whatever equivalent term) individuals, the known risk is a greater susceptibility to stress-related or other types of 'burn out'. I've seen this paradox so many times with people in high-stakes, high-profile occupational roles: where the adrenalin that drives them on the 'treadmill' of achievement is eventually the very cause of their falling off of it - with a nasty health-related, or other jolt! I've been there and got the T-shirt too ;-).
I'm familiar with Hay House and the philosophy of Mind and Body: and although there's a lot of cod-psychology in the Self-help / Business Psychology marketplace, there is some very good stuff in between the hype. I just worry a little that so many intelligent people get hooked on bogus psychology dressed-up as empirical research, but with no sound foundations. At the same time, who am I to knock this alternative form of Spiritualism if it works for people?!
As for cleaning and valeting cars, I have to admit I'm a bit OCD in this respect but find it incredibly therapeutic and rewarding (a 'man' thing / pride in the job?), and get passed around friends and family to 'do' their cars in between the more heady, intellectual stuff of training and consulting. Actually, it's a nice balance!
Many thanks for your lovely threads, lucy, and all here. Have a peaceful Easter and it will be nice to stay connected.
It does indeed sound like we're on the same wave length and although we have a different 'title' for the work we do, it sounds like there are a lot of overlaps. I orignally trained as a person centred counsellor but went on to do CBT and also integrate other aspects I learn along the way, depending on clients needs/goals etc.
Previous to training as a counsellor 10 years ago I worked in a coorporate environment/Management which I hated! Particularly once I started my counselling training. I love my work and feel very fortunate to do something I love, but I realise especially now that it doesn't come without its potential impact on me!
Thank you for sharing your experiences. I'm pleased to hear you have already overcome alot of difficulties and have no doubt you will overcome this current challenge. I think I'm realising that the ongoing challenge is not to 'strive' to do do/be anything but to allow........still working on this one!!
I too am usually reluctant to share too much about me (that also comes with the job!) but this feels like a safe and supportive group to share things with. Social media can be so negative and I really admire people who publicly put themselves out there to face others negative comments. A real added bonus in finding this group that I wasn't expecting.
Re Hay House, I have my favourites whose opinions/beliefs really resonate........ Wayne Dyer(who sadly died last August) Robert Holden, Dr David Hamilton, Mike Robbins plus a few others.
I'm making the most of the Easter break and enjoying a few days not having to think about anyone else. I've also decided I need to get back into giving myself Friday off again starting from this week.. In order for me to continue to work I need to manage it more effectively for me.
Enjoy the rest of your Easter break and look forward to talking again soon.
It's interesting to know about your corporate background, and in my opinion you're not missing anything! So many people and organisations I work with nowadays are living under the microscope of Performance Management which, for all its good intentions (improving efficiency / quality by analytics etc), often seems to put people under even more pressure, and make them defensive and mistrustful of PM's ulterior motives because of the often clumsy way in which it's implemented by senior management. I'd better stop there..!
I agree with you about this forum, there are so many thoughtful and insightful people here and it's good to feel part of a sharing / learning community if only a virtual one.
As for self-help marketplace, I agree. There are some great, and genuinely motivated 'gurus' among the many opportunists in this field. I think the problem with the social media is that anyone can be a self-appointed guru! I come across many 'kitchen table' Sales, Training and Leadership gurus on Forums like Linkedin, and often shudder...
Glad to see you're putting yourself first and taking the long-term view, as everyone says it's important to take the pressure off whilst recovering from PMR. Talking of pressure, I've got several days' local work during the next week or so (needs must), so may not be around quite so much but will dip-in here from time to time.
Keep smiling and thanks for an enjoyable dialogue, Lucy. It will be good to stay in touch.
Thanks Mark. Yes I definitely couldn't or wouldn't be prepared to 'play the game' required in corporate life anymore and am very grateful I don't have to!
I'm feeling so positive after this weekend of rest and feel like I have a much better understanding of how I'm going to approach this condition (not in a striving way!!) and talking to like minded people.
Like you I'm back to work tomorrow, but taking care of myself inbetween clients and am definitely giving myself Friday off.
I guess 'striving' isn't altogether a bad thing in context (e.g. for the benefit of our Nearest and Dearest or the more important things in life). So I think we shouldn't beat ourselves up for some aspects of 'drive / strive' that are part of all of us in one way or another, and mostly positive at times. It's all a part of being Human!
As you suggest, 'everything in balance' and, maybe as we get older / more aware of our mortality and vulnerability, this comes into sharper focus? It reminds me of my primary school reports: 'Mark is clearly gifted (what, me.?) but often acts before he thinks. Could do better'. Hummm... ok then.
My latest strand of freelance work is delivering Public Driver Speed Awareness Courses for 'Naughty Speeders' in conjunction with the Police authorities in the West Country. Big groups, a tight agenda, and lots of differing attitudes. But the up-side is that you meet people from all walks of life and, in some cases at least, feel that you have won Hearts and Minds around positive Behavioural Change. I'm sure, as in your work, this is the greatest reward of all?
Take things in your stride and catch up again soon.
p.s. Like you, I am quite a private person and not a Social Media or blogging 'Junkie'. But in the course of this forum I have established personal contact by e.mail with (literally) a couple of like-minded members who have wanted to get to know each other at a slightly more personal level, and / or with common interests outside of the scope of this forum.
If you want to communicate direct, my e.mail address is: @[] and professional website: @[] if you want to know more about me.
But I appreciate that everyone has their own personal / privacy boundaries, so I'll leave it to you.
I also seem to have been the 'strong reliable person ' throughout my life, both within family and work.
At 50 years, I suffered the loss of my brother and father within 6 weeks of each other. This resulted in what I believe was the start of PMR. The GP initially thought it was Rheumatoid at my inflammatory markers were up, but scans did not support this so I was sent on my merry way with Naproxin. Despite various visits - increasing pain - spreading to face etc, it took until I was 56 to be diagnosed, June 15, with PMR/GCA - it was put down to menopause and age! Face was treated as TMJ.
Interestingly, I am a spiritual counsellor & healer and do other complimentary therapies including Reiki, Crystal Healing and Colour Therapy.
I worked full time - really stressful job with about 60 staff under my direct management, and also worked most evenings and weekends with my therapies - also having a family and two horses!
I meditate regularly, also teach meditation and would have said I was balanced and ok, just in pain.
But with hindsight, clearly all of the above was too much just because we can 'manage' these demands does not mean we should. I now have learnt to say no, sorry I cannot ....... without the feeling of guilt or failure. I realise I cannot be everything to everyone .... and sometimes need support myself. A lesson I had not experienced or accepted before. I found it difficult to accept, help or strangely, kindness for myself, so used to offering that I was uncomfortable accepting it.
I have reduced my working hours to about 25 and work with my therapies a maximum of 3 evenings, to suit me. This is still if I am honest too much but am trying desperately to rest when I can and listen to my body.
Sleep has been an enormous problem, often awake most of the night especially when I was on 40mg or so. Now I am down to 17.5 (just this week), still sleep is intermittent but better.
Good luck with your journey and be kind to yourself.
Thanks for your message Lesley. I'm sorry to hear you had such a difficult time with the loss of your Dad and brother so close together. Then to struggle with this condition for so long before it was diagnosed. I clearly was very fortunate that even though I'm only 51 after the initial blood test following my first GP appt, and with my symptoms, my GP thought it was PMR but because of my age referred me to a rheumatologist who confirmed the diagnosis. All that happened within a couple of months. I cant imagine how I would have coped with the pain and not knowing before you got the right treatment and diagnosis.
Re sleep I've only started on 15mg and has affected my sleep but not to the same level as you, I hope yours continues to improve as you reduce. I've done my first reduction today down to 14mg, but am using the very phased approach as recommended on here by PMRPro
Your full time work sounded very stressful. I used to manage a dept of 30 and that was more than enough! I could never go back to working in that kind of environment.
I'm not sure whether you are still doing that part time or if you are only focussing on your counselling/spiritual work?
I am a counsellor and very spiritual particularly in recent years. I don't tend to mix the two but potentially may integrate more in the future.
It still sounds like you're working alot of hours. I thought I had a good work/life balance and these days tend to see between 10/12 ish clients/supervisees per week.
Often they can be spread over 5 days so I'm going to reduce down to 4 days so at least I get 3 days off per week.
You mention working weekends too? Even though its work l I imagine you enjoy, it still involves you giving to others. I recently did a really insightful exercise as part of my 8 week mindfulness course.
I will paste the exercise below..............
I personally found it very useful particularly when I realised that alot of what I do for work/personally can be both nourishing and depleting.
If you do it would be interested to hear how you got on with it.
Would be good to keep in touch.
Nourishing and Depleting Activities Exercise
Part 1
Take a few minutes to think about what you do in a typical working day. If there is no such thing as a ‘typical’ day, maybe combine activities from several days to make an average one. Make a list of these over the page.
If you spend much of your time doing similar things, maybe break down those activities into smaller parts eg emailing, talking to colleagues, writing, eating lunch, emails etc. Also include evening and weekend activities on the list too.
Part 2
Read through the activities on your list and ask yourself:
Which of these nourishes me, makes me feel calmer or more energised and actually alive and present? Mark those activities with a ‘+’ for nourishing
Which of these depletes me, draining my energy and making me feel tense or fragmented and maybe as though I am merely surviving/existing? Mark those with a ‘--‘ for depleting
Which of these don’t bring me up or down? Mark those with a ‘/’ for neutral
Part 3
Now take time to consider whether you could: reduce the time you spend on depleting activities, or approach them in a different way, being more present and curious; increase the amount of time you spend on nourishing activities; maybe change some of your neutral activities into positives by making them more nourishing and/or enjoyable.
Hi Lucy65, from one counsellor to another, welcome to this forum! I am 4 years in to my journey ( started when 52 years old) and have had some really rocky experiences, which I am happy to share with you anytime.
Regarding work, I am self-employed and found that I had to drastically cut my work about 8 months in to taking the Pred. I was getting virus after virus. My peer group helped me to make the very difficult decision to stop seeing all my clients. I kept on supervising, however. I have hardly had any virus's since then, so it worked. After a year, I started seeing a couple of clients and I am building that up very slowly and carefully and still doing a lot of supervision work.
Our work is very demanding of our energy and I have learnt that the hard way!
I too have done the mindfulness course and found some of it useful as long as we don't let it become yet another "should" in our lives. I have also found that when I am in a lot of pain, doing a mindfulness practice is the last thing I want to do! I do however see a psychotherapist who practices it with me which I prefer! The therapy has been very useful in helping me to be kinder to myself and knock out the inner critic.
Not only the illness but also having 2 elderly parents who rely on me, despite us not having a very good relationship, have been difficult to deal with.
What I hope is that all these experiences will be useful to me in my job, especially the chronic pain , the need to manage the weight gain and the useful direct experience of having to put BACP's ethics of counsellor self care and levels of competence into action- this last one is already proving very useful with my supervisees.
Anyway, do message me if there is any more I can help with in these difficult times.
I've found reading your posts and this whole thread really fascinating. I too was young (54) to be diagnosed with PMR and have always worked on my self-knowledge, with yoga and meditation. It took me a good long while to come to terms with having a chronic illness. I felt that I had almost 'failed' in some way to maintain my health and well-being, as though we can be in control of everything life throws at us. I sense some of that in your post, almost a feeling that if you had been able to see it coming you might have been able to do something to prevent it. Well, ten years on and recovered from PMR, I have come to understand that acceptance is just as much a part of caring for ourselves, loving ourselves, and forgiving ourselves for our physical weaknesses and whatever genetic or other timebomb we have lurking in our systems that one day is going to jump up and bite us!
Best wishes for a straightforward journey through PMR!
Thank you Kate so much for your message, its really appreciated. I can't tell you how much I have gained from this group and reading your book this week! The insIght and understanding I have gained has been truly life changing for me! I agree with you about what you noticed in my posts. However through my reflections on here following feedback I have seen so clearly for me how I personally have ended up here. I appreciate I am at such an early stage of my PMR journey and not sure what the future looks like but right now am so grateful that this has bought me to the realisation of how I I got here and changes I need to make in my life. Without being diagnosed with this condition I would probably have continued to be strong for everyone as long as my body allowed it! Please feel free to contact me privately Kate if you want to discuss anything further or if there is any capacity I can help you with your work. As I said the support and insight I have gained from everyone has been amazing. Notice I'm replying to this early in the morning, Yes I'm still waking early!
Lucy65, At least you now know the causes of pain etc. You can benefit from much good advice given by new understanding friends. I also need to follow good advice given.
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