EDITED to add some thoughts
Some essential tips:
psyche.co/guides/how-to-liv...
As PMRPro says, it sums up everything that gets mentioned on here like looking forward not back, pacing, researching your condition and finding medics who can help not hinder you, thinking differently, making lifestyle changes
What do you think?
Some good pointers in there…
This is a very good and helpful. My life fell apart when I was diagnosed with MS at the age of 29 at a time when there were no disease modifying drugs for MS. Over the years I lost the ability to walk going from cane to crutches to walker to wheelchair and have been in a wheelchair now for twenty years. There was a lot of adapting to do to with this chronic condition as the challenges kept changing. However, at the very beginning I read Victor Frankl’s book Man’s Search for Meaning. He lived through being in a concentration camp and losing all his family. He said “everything can be taken away from a man but the last of human freedoms, the freedom to choose how to react to any given set of circumstances.” This was a very freeing thought for me because it was the only thing over which I had some control. It has often been a battle of course but I really have found that concentrating on what I can do, rather than on what I can’t do, and taking one day at a time, rather than looking back grieving what I have lost or worrying about what tomorrow may bring, has helped me to go on with my life, go to school, get my degrees and have a wonderful life as a teacher (showing young healthy college students how it is possible to live well with illness and disability), I retired 20 years ago and am now 79 and then, out of the blue, last year I got GCA and started on 60 mg of prednisone with all those side effects!!! So ..... here we go again. More challenges and the need to be grateful for what I have, for the friends who help me, and for having been given 79 years. (When I was 29 a neurologist at that time told me not to worry as MS patients lived for 25 years which didn’t seem long to me at that age!) anyway, my friends on this website, sorry this is so long but just wanted to encourage us all that we can go on despite all the challenges and we will!
Well said Kt1943 😊
What challenges you have faced and what great things you’ve achieved! Well done to you, you’re an inspiration x
I was diagnosed with myasthenia gravis at 29, which was life threatening at the time. I was lucky enough to have a thymectomy and have been more or less in remission for much of my life, as long as I’ve adapted to allow for much diminished stamina. Like you, I’ve managed to live a good and useful life.
In a way this has given me good practice for coping with PMR, although sometimes it does get to me, I regret to say.
Once again well done and thanks for your inspiring post xx
How frightening to be diagnosed with myasthenia gravis and I am so happy that the treatment threw it into remission apart from some ongoing challenges. I know how devastating diagnoses can be. It just happened that a few days before the neurologist told me I had MS, i picked up a magazine in the opthalmologist’s office and there was a story about a woman with MS that focused on a worst case scenario and she appeared helpless and hopeless. For a long time I was sure I would wake up one day completely paralyzed! My 79 year old self can now tell my 29 yer old self “see there , didn’t happen!” Some days it is more of a battle than others but we are not alone in the battle which makes all the difference. Thank you for your reply.😀
Thank you Kt1943 😊
Indeed it was frightening but happily I turned out to be one of the 30% then predicted to go into remission (there was no way of knowing this until a couple of years after diagnosis), and, as you say, I’ve made it to 72! Never thought I would……
I agree, I focus as much on what I can do, as on what I can’t…but it’s not easy. All the best to you xx
I so admire your spirit and thanks for encouraging us all. I bought that book a few years ago but haven't been able to face reading it as I'm told it's harrowing, but you've inspired me to dust it off and give it a go
Yes, from what I remember it is a hard read but I pulled out the one thing that really helped me. You always have such encouraging things to share. Thank you for being so much a part of our lives.
Thanks for that, Im a bit of a Pollyanna, over-optimistic at times, but hope what helps me might also help others. You've inspired me today. When would be a good time to read that book I wonder, seems a bit incongruous to read such bleak things on a sunny day like this, een though as you say hope shines through despite the evil of man's unhumanity to man
It has been a while since i read it so maybe give it a miss and enjoy the sun but keep out of the heat!
I think the message in the book is uplifting.
I read Man's Search for Meaning. last year and was so moved by it I actually gave each of my kids a copy at Christmastime. (To add to their joy I also gave them Our House is on Fire by Greta Thunberg and her family.)
And, what was the result, have they read it/them? do they think their mum has finally flipped? 
One son had already read Man's Search for Meaning, but he said he was happy to have his own copy. As for the Greta Thunberg book, all the girls in the family are into food in a big way. Two of them are trained dietitians, although only one of them works as such, and the third is a baker of "cookies and treats" which she sells at the farmers' market. The men are all foodies too and do a lot of cooking. So reading about Greta's struggle with eating, and the family's struggle with helping her, was, I thought, of interest to them all, never mind the climate crisis aspect.
I didn't know the full Greta story, I might have to buy that book too now!
I’m sure at 25 a diagnosis of MS was devastating…and you are so right, we are a lot more resilient than we realise - and although we never want to be put in situations that test us to the extreme, it sometimes makes us a better person. It is the old cliche of one day at a time, in fact sometimes it’s one hour at a time.
Don’t ever worry about the length of a post -when you have something important and as uplifting as you have to say -then please say it.
I had GCA and lost the sight in one eye through a late diagnosis but compared to your life it’s a minor inconvenience, nothing more.
Take care -and good luck with your GCA journey 🌸
Your posts are always very encouraging and uplifting and have helped me a lot. One of the things I have to be grateful for is that the GCA was caught in time to save me from losing eyesight so I definitely don’t think my challenges are more than yours! On we go!
Thank you..,
“On we go”.., no choice really, and life’s still good. Pretty much all we can ask for when you look around the world.
I like this. Thank you for sharing it. It crystallises thoughts I have been having. For a long time I was obsessed with getting back to where I used to be. I think that I have accepted that I am in a whole other country now. Believe it or not, some of it is better than before. 🌈
Yes, we're never 'going to be back to our old selves' we need to look forward not backward as the article says. As you say, the past is another country
i think that is a really good article. It gathers together all the things that get said here in bits ...
Excellent article, tangocharlie, thanks for posting it 😊
I found it so good it actually brought a lump to my throat (in a good way!) xx
I have to admit that I do look back at times but only to see what I couldn’t do and can do now!
Good article and so true. The past is gone. I’m still alive and still have a future. Maybe not the one I thought but who does have the life they thought they would?
Very true …
Yeah, I'd always assumed by now I'd have made it rich and be sitting on my rocking chair on the verandah somewhere tropical.
Would that be the one that should have been next door to my verandah?? 😂😂
Excellent 'read' with constructive advice that clearly works. Thankyou
There's still time, TC 😂😂🤣.
that made me laugh! yeah I've just signed up for monthly charity lotteries for Age UK and the Macular Society, work out about a £1 a week, you don't win big money but it might get me a holiday in the Caribbean. That's my Plan B
Well! That IS a plan and I hope your dream comes true. I was lucky enough to go to St Thomas some years ago after I'd retired. My son won an award at work which was six days for two in the Carribean-all expenses paid. My dil couldn't go (head teacher) so of course Mum was invited !
Keep the dream alive! 😁
Wow what luck, I'm aiming for a week at Strawberry Hill in hte Blue Mountains of Jamaica one day. I'd planned to go for my 60th birthday as I was born in Jamaica and fancied being there to mark the occasion, but that was in the peak of Covid lockdown and I had to have a Zoom party from home instead, not quite the same, even though I decorated the flat with all things tropical like plastic palm trees to feel like I was there. Maybe for my 62nd birthday LOL. I look at pictures of the place and visualise success!
I do like your spirit and your imagination; great idea to have a Zoom party to celebrate your 60th and much better than moping about what might have been. Everything comes to s/ he who waits!
I had a week in Antigua many years ago when we lived in Germany - OH was invited to a workshop there, mainly US participants so it did make sense. Flew out Nuremburg, Heathrow, Barbados - had a lovely week at Curtain Bluff and the big regatta thing was under our noses! The flight back was an adventure as we didn't have US visas having been told we didn't need them but they had routed us via Puerto Rico and JFK!! You can't transit ... But that got us into First Class where they could keep an eye on us, the Clipper Lounge at JFK and Business Class to Frankfurt! We coped
And we had another work-related trip to Barbados where we stayed with the hospital consultant doing the study for a few weeks. Brilliant!
You- needing an eye kept on you? Must have been the balaclava and bushy eyebrows. I'm sure you enjoyed business class and all the add-ons. Could have been a lot worse; I'm thinking of 'The Terminal'-Tom Hanks. 😀
The most unnerving thing - apart from being held in an underground area with armed guards and what looked like half of the South American drugs cartels - was our passports being seized! Though strangely, when we got to the Clipper lounge at JFK we got them back and could have wandered around anywhere! All quite surreal
Forgot to say - we got on and were introduced to the crew (so they could keep an eye on us) and turned right for cattle class - as you do - "Oh no madam, this way please ..." "And what would you like to drink: mimosas, orange juice, champagne ...?" Whole different world!
I love a happy ending!
Thanks Tangocharlie. Very Interesting.
Kept saying yes, yes, yes to all of that....thanks, we sometimes feel quite alone with this....but we are not.....
A great read. I can particularly relate to the PTSD vs. PTG….something I’ve presented on in various platforms. This insight helped when I was suddenly faced with PMR literally overnight.
Good article. Thanks for posting.
Did any of it particularly resonate?
Thanks!!
Excellent advice - we are lucky pred helps us
Indeed I feel so sorry for people with other autoimmune things who might benefit from steroids but are never offered them
Some really helpful food for thought there. Thanks for posting the article TangoCharlie.
This is a brilliant read , thanks for sharing..it makes a lot of sense .
A very useful article, thanks. However, "find yourself a good mental health professional " is virtually impossible in this country, unless you can pay! I'm thinking of my nephew, who is so desperate for help having attempted suicide and disabled himself in the process. He has been told he has to wait 2 years to see a psychiatrist. Meanwhile the CPNs he was seeing have changed frequently meaning he had to start over again each time and now there's no one at all...He lives confined in his room 24/7.
This is awful to read, I literally don't know what to say. Surely a perfect story for the national papers. Your poor nephew. Dreadful
Thanks for your sympathy. It's a horrendous story starting with childhood abuse and neglect. He lives with my hubby's parents (his grandparents) but Grandad is depressed too and won't leave the house. Grandma is 80 and has to be primary carer for him and her grandson. She has OA, SLE, a leaky heart valve and a uterine prolapse, but she keeps going as the matriarch of the family. She is very proud and won't accept help. They're also a very private family who tend to brush things under the carpet so the issues causing my (hubby's) nephew's mental health problems have never been addressed with his father who only lives around the corner and is totally unaware that he has done anything wrong. Definitely not one for the papers! I wish I could do something, but it's not my place as daughter-in-law. We try our best to help when we visit but most of the time "J" won't come out of his room.
As I'm reading this section of the thread I wonder, would the recommended article help your nephew? Would he read it if you sent it?
That's horrible but I don't know what to suggest. Keep asking for help, never give in. Be there for him, hugs and listening can only help? The NHS is on its knees, I'm biting my tongue as this is not a forum for politics. Let's stick to commenting on the article in his thread or we'll all end up angry and ranting at the state of the world instead of taking in the wise words of the article. When I was stuck in a rut I asked myself questions like Who else can help me, what other help is available out there? (How I found this forum) . My heart goes out to you and anyone trying to help others
Thanks, I agree that self help is the best way, but not everyone can get out of their rut to ask for it, or if they do, it's not always there. For those who can, forums like this one help you, not just with practical advice, but with giving you a sense of fellowship and belonging.
And that belonging and support and research, as the article says, is a key help. keep going x
Once when I was desperate and didn't know what to do or where to turn but needed medical help, in fact twice with 2 different things, I took myself down to A&E. It worked, I was then 'in the system' and eventually got appointments I needed. If in doubt get your nephew to A&E
Thanks, he lives 100 odd miles away from us and his grandma would not be too happy if we barged in and took over. Besides, he would refuse to go. Sorry to be so negative, but that's the reality of it. I'll speak to her again and tell her to ring a crisis line or something - if such a thing exists.
I have a friend who has serious mental health problems there are loads of thngs in place like crisis teams and she has numbers to ring in emergency. The GP is fantastic. I'm told Samaritans and Mind are good contacts
Thanks. Their GP is no good after he frightened J so much he freaked out and the GP had him thrown out of the surgery. Now J refuses to go there again.I'll suggest the other help you listed though.
Thank you for sharing 🌻
Hope you found some useful ideas in there
It really is a good article and totally relatable....saved in my folder dedicated to tips from this forum 😊
It's remembering to put these principles into practice that I find difficult. The secret of success as Stephen Covey would say is to make them habits
Yes definitely! 'Pace yourself, learn your limits, and set boundaries' has always been a problem for me. My physio said 'if you do too much you'll know about it, but if you do too little, you'll know about it' ...I always burn myself out...like you say, need to make those changes habits 👍
One of my 'boundaries' has to be avoiding sugar and carbs, I know it has a dreadful effect on my body yet struggle to resist. And doing everything I can to try and improve sleep like not having a cup of tea at 10pm even if I feel like one. I'm working postively on both and I think seeing things as 'non-negotiable boundaries' rather than 'things I can't have' will help
😊....I feel like I've just written that reply! Totally hear you!...and yes...I shall try using the 'non-negotiable boundaries' thought process ...thanks 🌻
Thanks TC. A good thoughtful read.
Thanks for sharing this great article. I was stuck for many years “looking back” as a form of denial and a coping mechanism I guess - it was a way of holding on to the person I had been and the life that I had built. Accepting, with grace, that that life (and version of myself) had gone was both liberating and profoundly depressing. Only once I had fully grieved the loss was I able to move forward.
It made me think of the Kubler-Ross grief curve, I spent too long in denial thinking just keep calm and carry on as normal, and as that wasn't possible in reality I ended up angry and frustrated. The Acceptance point is hard to reach!
"The Acceptance point is hard to reach"
That depends on the person - but it is absolutely key
It takes time as well. Sometimes I think I'm there but other times I'm back in anger or denial depression or even bargaining. I think it's curve we keep going backwards and forwards on until we reach enlightenment and have the tools and wisdom to stay there!
Moving for forward, and not back. Writing a new narrative on life. Finding balance in life with a good support team. Yes, this article is timely in my life. Of course, I seem to want to test these limits. Just applied to a full time job to return to a highly stressful job after a 2 year absence. Been depressed thinking I cannot return. As soon as I applied, I felt a weight off my shoulders because I felt it to be the right move. I don't know what I cannot do unless I try. Now, I have allowed the narrative to pivot if needed based on how I feel. If I no longer can do the job than I will move to part time or even let it go. I just need to try. Hope this is not a step backwards. We will see. Thank you for the article.
Can you start part time and build up? Having PMR/GCA needs adjustments and if you overdo things you end up even worse off. Be kind to yourself if you want to heal, don't push yourself hard, sounds to me like you're saying 'I should' which the article warns about
Part time may be an option. I hope it is. May not be the case for this job. Yes, I suffer from should and could. Been a difficult adjustment accepting that I cannot do a job I have spent a life time doing at it full capacity. I am only 49 years old. I will pivot if needed, but need to try for peace of mind.
I can imagine. I was only 51 when I got PMR so had not option but to continue working, it didn't cross my mind not to as I didn't know then that PMR is a game-changer and needs to be treated with respect. Definnintely not a case of take the tablets and carry on as normal. Luckily I was self-employed so could largely choose when to work, but I'd really suffer after and pay the consequences, 1 days work and 3 days rest or similar. And as I still have PMR 10 years later I can't help wondering whether pushing myself too hard made things worse in the long run as the stress won't have done the inflammation any good and I was never pain free?
Sorry for late reply. Thank you for taking the time to tell your story.
I can imagine it will be a challenge for me to work this job. It is a highly stressful profession with limited capability for breaks. I do believe part time is the way to go, but the position is advertised full time. The writing on the wall states I should not take the job based on the diagnosis, but my mind is not willing to give up without trying. This is my first real attempt to work after being diagnosed. We will see.
I really liked this article. I've lived with chronic pain for 17 years and it took me 10 years to stop trying to get back and try to look forward. Thank you for sharing.
Thank you Tangocharlie, it’s a very helpful article. I shall ask my OH to print it out for me. BTW, just seen your other posting about the other problem you are also having. You are such an amazing positive person, it so rotten for you to have to go through this as well. With such dreadful medics who are no help to you. It does seem to be a more common theme from so many of us here, sad to say!
Anyway, thank you so much for all your helpful postings, always very grateful.
Aw thanks, that feedback has cheered me up! I have become a bit cynical about the medical profession and the way the system works or doesn't work for patients and have to remind myself that there are plenty of good doctors out there too, I just need to find them LOL. Luckily I have a great rheumatologist. I copied and pasted the article into a Word document whihc is easier to print so if you want a copy, send me a private message with your email and I'll send you it
Thank you for this. Your posts are always helpful. 💐
Unfortunately I think you are right. For a lot of us it does seem that we are sadly let down by some of the medics who should be helping us. Not only that, but it seems made to actually feel worse as though we are making things up. Why would we?
Yes, I believe you are very lucky in having the lovely rheumatologist that you do have. Sadly I haven’t had that luck and actually see no value in going to one anymore. Just a question of plodding on and telling my GP occasionally what I am doing. I don’t seem to be having any more follow ups with her either!
TBH I don't think rheumies can do much apart from offer DMARDS and ordering tests as required eg PET CT scans, so if you think you need either of those, see if you can get referred to a good one. A well-managed GP who is flexible in thinking and treatment is far more use, in fact essential You definitely need a rheumie for things like GCA, LVV and adrenal problems if you ever get these things, or you are still not well despite steroids
An excellent read! I found it moving and inspirational and 'real'. Thank you so much for sharing it.x
I know you have also had a lot of challenges with a lot of different things going on. And i also know it is not easy as it has to be an ongoing process. One thing I do know is that you have helped a lot of us on this site with your detailed and helpful comments. So thank you for that.
What I found very affirming in this article was what she said about being informed. That to educate yourself, and take agency, enables us to reject victim mentality. I found the medical profession woefully uninformed, and was so glad to find this forum and all the information it points to, and the advice and support it gives. I spent a lot of time reading as much as I could about PMR, with the help of this forum. I felt people around me thought that all this reading up was too much. Several who had had an easy ride with PMR themselves told me they had done well because they hadn't focused on it, rejected the idea of being in a support group, and "had a positive attitude". I felt like wringing their necks! (an expression of my mother's!) So to read that being informed and as a result being able to make decisions for oneself is the opposite of being a victim, I feel really vindicated.
Well said, that bit resonated with me too, particularly as I was never a 'standard case' of PMR that went away after a couple of years, even though that's what my GP told me when I was dx. This forum literally saved my life once and given me the info I've needed when stuck trying to get help. I was able to advocate for myself and call 'bullsh*t' to doctors who would have done me more harm. At one point recently I took a break from here as I wondered if thinking about my illness too much had made me depressed, but when that didn't work I came back and found the opposite was the case, that the connection and empwerment behind understanding my illness really helped. Being on here and sharing things like this also helps me to be able to help others with the information and inspiration they need on their PMR journeys. Oh I've had all that well-meaning advice too, I just need to exercise more etc, get a job, that'll keep me busy .... I'm sure they mean to help but it's very tiresome people thinking they know my illness better than me. I have always been a happy positive person, apart from the occasional inevitable dip from time to time that is normal life, so most of my friends are positive and encouraging knowing I'm doing my best. I had a lovely compliment from one recently 'Life keeps throwing you sh*t TC but you always manage to find the roses' - so I keep such friends and ditch the others!
Loved this article....thank you for sharing. And illustrates again for me how important this forum has already become for me. I'm only 6 weeks into a diagnosis, but have gained all my knowledge here and feel so much more prepared for going forward. I have already swapped by beloved hill walks in Wales for more leisurely, short ambles along the river...and the housework can go hang whilst I'm filling my home with a new passion for houseplants😀
Welcome to the forum, glad you found us! Fingers crossed you have a smooth PMR journey, most people do, but it's good to know you have somewhere to turn when you need it and guides like this to be able to tweak your lifestyle to live well despite illness. I wish I'd known these things in the first few years. I'm crazy plant woman too as I live in a flat, I'm sure nurturing nature is good for the soul even if it's a spider plant. Normally everything thrives as the flat is very sunny but struggling with Calatheas and running out of space to put pots
Thank you so much tangocharlie
I think I'm doing ok, but I'm so glad I found the forum before speaking to my GP. I speak with a different GP now who seems to have more experience of PMR at least....and is happy for me to follow my own plan ( taken from forum members and not medics). I refused a starting dose of 60mg pred, so tried 15mg, upped it to 20 for a couple of weeks, and have just started on 17, which, so far is going ok.
I've embraced a low carb diet...from advice on the forum and have significantly reduced my activity (ditto). It's not all plain sailing, but I'm feeling optimistic in the main.
It may not come off (nhs budgets), but the GP is trying to follow through on a dexa scan for me....I wouldn't have known about those without the forum....well, I would have been on very high doses of pred from the beginning if I hadn't have found you first!
Thank you for all you do for this particular community ....it's very much appreciated
Knowledge is power! Low carb works, when I stick to it!
Was there anything to suggest you might have GCA for the GP to want to use that sort of dose?
Hello. No, not at all. GP still has made no reference to GCA. I have spoken with a different GP since and she says not....which is reassuring. After consulting the gurus on this forum once I was diagnosed, I asked for my ESR and CRP levels. 42 and 7 respectively, which I now know fall into PMR territory. I feel as though potentially anyway, I had a lucky escape. Obviously, I cannot be sure what effect that dosage of steroids would have had, but as things are for me so far, 20mg appears to have knocked the inflammation back....and I'm currently taking 17mg. I am having side effects (albeit relatively minor) from the current dose.. Thank you all again for this forum. If I hadn't have found it and read up beforehand, I would have just accepted the GP's prescription at the outset.
What on earth possessed them to want to start you on such a high dose? All they have to do is google starting dose for PMR and they would find plenty of information!!! They are terrified of using pred - it would help if they used it properly!
I'm assuming he was reading the wrong screen! I was diagnosed over the phone, and after I challenged the 60mg, I could hear him swinging around to look something up. He then came back with a suggestion of 15mg, which, by then, I knew was the orthodox approach, but at the time, it also seemed like an about turn from 60mg! As I say, I am so glad I found this forum before that phone consultation! His other bizarre (to me anyway) comment, was that I could still eat chocolate and ice-cream???. That was when I had asked him about the risks of osteoporosis. Anyway, he did prescribe lansoprazole and adcal. The second GP seems more clued up, so I'm going to stick with her if I can going forward (not always possible here). I told her I was going to up the dosage of pred from 15mg to 20mg to try and then to start reducing after 10 or so days. To be fair to her, she has listened to me and is keen to speak to me every 2 weeks at present. She is going to see if I fit the criteria for a dexa scan. I'll wait and see what the official line is (budgets!) and if the NHS won't stump up, I'll ask how much it would be to go privately. I'm guessing something like that won't negatively affect anyone else on a waiting list.
I'm learning so much from this forum...it's been fab!
Of course you fit the criteria - you are on long term pred! Except no doubt it is easier for them to give an unpleasant drug with side effects than to look and see if you really need it! The combination of PMR and hypothyroid and their meds are likely to persuade them you just need the pills!!!
I've seen pictures of towel rails (put them anywhere you wish) with plant pots hung on them. A wall of plants would look amazing.
I found this to be a very helpful article. Thank you!
Any bit in particular?
I believe it is a timely message for me. Through this website I have gained a lot of insight into PMR. Especially the tapering process which has been very troublesome for me. The author of the article mentions how understanding your illness and the needs that accompany it are important in moving forward. I definitely am (or hopefully was) trying to get back to the old me and very critical of myself. Because of the PMR website I now realize my goal is quality of life.
This article supports the wisdom of this and offers guidelines to help me make that happen.
I lke that - 'my goal is quality of life'
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