It's both perplexing and frustrating even though I have accepted this condition. What challenges me is how someone as fit and physically strong even at 70 then could deteriorate within a year to the physical state I now exhibit. I stay active and won't ever give up hope that when no longer needing the pred. and other drugs I will be able to rebuild some of what I have lost. It seems a long way off at present and staying positive is key. However, given how little I am now able to achieve makes that hard. I recently filled in the Cambridge survey and couldn't help but notice the emphasis they placed on mental health and body image. I consider that I have never had cogency issues or such depression I couldn't get past. I only had real problems at the start when I was kindly informed I was grieving for what I had lost. That helped enormously. The body image for me is tied to physical performance and I am shocked to see an old man's legs and arms , as I would once have described them, on me. I had cyclists muscled athletic and powerful legs which I worked hard to maintain because I knew the downside of not doing so and a real upper body strength from 40 years of furniture making and manual graft. I see a belly which makes me look pregnant and my weight is much the same apart from 5 litres of fluid retention. The muscle has converted to fat and despite careful eating it's not disappearing anytime soon. I am not vain and accept the way I now look but it is disheartening considering how hard I have worked all my life to live healthily and be active. Trying to understand how this condition has disabled me physically and taken this muscle and stamina from me whilst trying to get some energy and stamina back is a very frustrating battle. I am trying hard to work within what it allows me to do without getting too upset. That's pointless. I'm now reducing and hopefully will get past 22.5mg to 20 very soon. My new Rheumy is good and has said that at that level I can begin to think of turbo sessions. However, in all honesty, I genuinely have no energy for that especially with this swelling and fluid retention. Hopefully the new drugs will help me get rid of it and then the system might be able to cope better with exercise. We'll see, Just wanted to post this state for general discussion if interested.
Constant battle to understand: It's both perplexing... - PMRGCAuk
Constant battle to understand
I think you have illustrated very clearly how hard it is for previously very fit people to adjust. The couch potatoes probably don't mind anything like as much! I wasn't fantastically fit - not even moderately so, but the sporty things I have lost over the years were hard at the time although I had had a long run-up to the final decision. It is scary to realise how quickly you can go from being fit and healthy enough to live what we consider a normal life to a real pit. And an accident that does it is an even bigger shock really.
So sorry you are going through this. I wasn't the athlete you were, but did many triathons and 3 marathons and it all came to a screeching halt when I had a bike accident a week after the last triathlon.. then virus 5 days later then PMR. And now, 5 years later I wonder where the triathlete went. I have never had to however be on the amount of prednisone you are on and know it must be difficult! Dont give up. You are still YOUNG! and can get back your muscles and strength. Keep on keeping on! Hope you start to feel better with new meds. Take it easy at first with those turbo sessions!!!
Thanks so much. I've only been at it for a year but it hurts so much sometimes. I will get the wife's barn converted for her weaving, and I'll get my machine shop converted to make my designs again. Just not sure when that will be yet but they are works in progress and we still hope. I will also get back to cycling and have been working on all the bikes for that day. Still have 20years of plans to achieve.
I understand completely how you feel. I too was so proud of how young I looked and felt. I can’t seem to lose the belly fat and my face now looks like an old woman. I had arthritis before GCA but now I’m off prednisone, the arthritis pain is so bad I can barely walk. Actemra has given a lot of my life back but because of the drugs I continue to have high blood pressure and cholesterol. I now take 2 blood pressure drugs and because I can’t take statins I am on a drug called Rapatha which is very expensive. I also have an irregular heartbeat which wasn’t there before. I’ve had to accept this but sometimes I still have a pity party for myself. I know there are young people who die from horrible diseases every day and sometimes leave young children behind so I have to put it in perspective
There is a guy who used to be on here called Skinnyjohnie or similar, he was an ex-firefighter and mountain climber, obviously had to give up when he got PMR but got back into it and did a talk on climbing a bit of the Annapurna range for the charity's AGM a few years ago. Can't find his posts now, can anyone else?
Think cycli is aware of him -but his profile is here for anyone that isn’t -
I am aware tango and have met him. He is relatively local as is Jinasc. Had a great time meeting both and learning much. Thanks for a very good and convivial lunch Jinasc.
Hi cycli, I am so sorry you are going through this. For what it’s worth, you sound to be handling it very well, if you don’t mind me saying so 😊
I was never athletic, being one of nature’s library dwellers/ couch potatoes, and even I am shocked by the speed of my physical deterioration. My legs and arms have little strength, the skin sags, my face is puffy….I could go on. I know so well that feeling of looking at myself (especially in photos) in semi-disbelief. But it’s the inability to do things, not my looks, that really gets to me.
I reckon you’re doing really well, you have your objectives and you have your flexible plans. Good luck to you, and hugs xx
thank you so much. Like everyone else it is so good to have this platform to just let go occasionally and not ask for sympathy but know people "get it". That's the really hard part and then the realisation it's not over but continuing until it pleases. Just taken Rex for his walk to say goodbye to the archaeologists who are finishing their year 2 dig on our farm. Exciting to know that there have been communities living here from Neolithic times right through bronze, iron, Roman and medieval. Such continuity is gratifying. It rained hard on the way back so good all round as we need the rain to grow the parched grass for our flock.
Is that the dig I saw on TV the other day I wonder - remember thinking it must be up your neck of the woods! How exciting!
no, but the same people are involved. This dig has found the first evidence of Iron age in this valley and we have given permission to continue as long as they want to map out how people lived and worked here. Very exciting as you say. We have had on of the most significant bronze age hoards found here but before we owned the farm. Now they wish to understand how the whole valley linked and communicated.
No cyclic not yet have you accepted it. It is hard to accept that your old life has gone and it won't come back and that is reality.
I and others had to find another path to get on with the hand we have been dealt with.
Many people are not able to do at 70 what they were able to do at 69 - it is called ageing.
I know you are mourning for your old life, but who is to say that
if you had bike, car accident , broke limbs etc that your life would not have changed. In my book they could have well changed your life. as well.
I think It is because we cannot see the cause (ie PMR and GCA) ..........and it is a difficult a concept to get your head around that your own body is attacking its self.
I was sent this poem, which I published in a newsletter when I could not get my head around why this had happened to me............... yes I was 68 at the time...........
I laughed out loud and never forgot it and yes, all those items have happened as I got older and they are nothing to do with GCA or PMR.
AND MOTHER NATURE LOOKED DOWN
Most seniors never get enough exercise.
In her wisdom she decreed that seniors become forgetful so they would have to search for their glasses, keys and other things thus doing more walking.
And Mother Nature looked down and saw that it was good.
Then Mother Nature saw there was another need.
In Her wisdom she made seniors lose coordination so they would drop things requiring them to bend, reach and stretch.
And Mother Nature looked down and saw that it was good.
Then Mother Nature considered the function of bladders and decided seniors would have additional calls of nature requiring more trips to the bathroom, thus providing more exercise.
Mother Nature looked down and saw that was good.
So if you find as you age, you are getting up and down more, remember its mother natures will. It’s all in your best interest even though you mutter under your breath.
The End
Remember you met a man who was a senior fire officer, was sent to New York when the twin Towers went up, ran marathons, climbed K2, Everest etc and raised money to supply heated pools and extras for children's hospital. Then PMR came along and took a while, but he turned his life around and raised money for PMR & GCA and ran a support group. Support groups are run by people who have either or both.
So hang on in there cyclic - you will get through it - you have a strong mind but this time 'Mind over Matter' I found did not work.
😈 PS Take a look at the Newcastle Diet in the FAQ's.
😈😈 PPS This time it is Hel answering not jinasc.
as always insightful and firm and mind over matter doesn't work with this condition. However, mind does matter as we can think our way around and through this and I intend to stretch that to the limit whilst working within its current limitations.
"mind does matter as we can think our way around". I did that and I look at the result and think, thank goodness I met another 5 and we became pmrfighters 5. Results to date? One of those results is this forum.
However I never got back the old me pre GCA. I always hope that others will.
I think acceptance is different reflecting how each individual sees themselves on the journey. In a passive sense when one sees no option but to accept everything that happens and adjust to each change which appears to be an ever downward physical spiral. It may seem defeatist to some. In an active sense to recognise the deterioration but to seek ways to counter this by keeping everything going but at a lower level. This may appear to be putting the condition at risk of flaring through excessive stress. Neither is right nor wrong. They are natural outcomes of individuals trying to cope. There are an infinite range of variations between these. We all learn from sharing these approaches . From experience now I can attest that whatever one wants to try and do the physical deterioration from the pred. and the need to suppress the inflammation of necessity curtails ones ability to even contemplate achieving anything significantly physical. It doesn't mean one will not be able to in the future but it does limit the present. This is the area I would expect the Rheumatologists and heart specialists to be able to give advice and they seem singularly lacking in any notion of what is happening physically and have no advice.
I worked in a series for the BBC for some 40 years. A new editor came along and dispensed with my services by not using them. It was a shock, there was transition and then new experiences. Life is perpetually interesting, fresh relationships, new goals, other talents can develop. You are articulate, your previous ideas as to what gives your life meaning have been shaken up and will settle into a new form. You’ll be fine. Go for it!
I know you are right intellectually. I am at the cusp of acceptance and understanding this condition. Therefore I still see an avenue to getting a handle on a way to manage my way through. I want to experiment and see if there is a way to control it as that would be better than freewheeling through the uncertainties it heaps on us all. I've got some ideas which I intend to pursue. If they don't work out then I'll just adapt to what it will let me do. Can't hurt to try, well not too much I hope.
I think for someone like me who was not a person who exercised regularly it has not been so hard. I was diagnosed with type 2 diabetes 4 months after my PMR diagnosis and that shook me up. I changed my diet and built up my walking. I aim to do over 13,000 steps each day. Although I have the usual aches I feel I have actually improved my fitness levels and feel that PMR has given me the kick up the butt I needed.
I am sure you will achieve your goals so good luck to you and thank you for posting this
this condition is a wake up call to all of us and an opportunity to reassess and reboot our lives. I have accepted what I have but don't see at this stage why I can't get some of what I was planning back. Time will tell.
You may well, Jonnie did
he did and what a joy it was to meet him and see for myself. Whilst he didn't have GCA and is younger I am still hopeful. Going to be very herd work though.
I think you have the determination!
Hi Cycli...one of my acts of acceptance was to acquire an e-bike...some might view this as cheating, but for now, it means I can still enjoy cycling...with a view to 'coming back'...life whist on pred, and the hope of life after....Good luck.
For someone like me that is not an option I wish to consider, even if the wife would let me acquire yet another bike. ( I had 13, Have sold or given away 6) still have 2 track bikes one for road single free, 3 road, one carbon for climbs, one roberts custom fitted for touring ,one my pride and joy 953 for 6 day events. A mountain bike for the fells and a spare for friends. Pedalling under load is what will rebuild muscle, when I have the energy.
I couldn't have an e-bike or any other bike, as I would fall off. Like the idea though!!
Oh Bobbury. I do so love your attitude and spirit. It has me smiling at every response. Keep on with that approach as it is heartening to read.
Hey thanks for that. But do you know what, yesterday was a bad day for me, unable to do anything, really fed up with myself. Just siting and wondering why! I fell over Friday, really hurt myself. Big chunk out of my leg, pulled a muscle in my chest. The biggest bruise ever down my leg. Mind you it did match the colour of my shorts so it didn't look too bad. I suppose it's a sort of trend setter, one leg the same colour as your shorts! Anyway I digress, so today, spring chicken time, feel 100 percent better. Still got a wonky leg but hey I'm good. I could crush a grape!! Off with the dog walkies, see if i can come back without failing over!
“I fell over Friday” -
-just answered your own question why you felt grotty yesterday
As for “crushing a grape” -showing your age there! 😂🤣
I know, the phrase just popped into my head. Funny, you can hold stuff that's years old but you cant remember what you did yesterday!!!
Ahh well…there’s this little thing called ageing….
I can sing all the words to a lot of the 60s songs (and in the right order!) … 🎶🎵🎤..
Don't they say if you can remember the 60s you weren't there? 
I was singing as 1st treble in choir practice when they told us Kennedy had been shot. 63 was when I had to walk through snow drifts 1.5 miles to St Peters in St Albans to choir practice and back through a blizzard
Hmmm..but it’s surprising what random things you do remember! Nuff said.. 😳
You are a few years ahead of me - I have only my schooldays to remember! Not entirely appealing
Early 60s was still in education....married and mother by the end... with a bit of misspent youth inbetween....so fairly eventful decade...💃🎶...
I left home for uni in autumn '69 - and met OH by Christmas ,,,
Actually my eyes (plural in those days!) met mine across a crowded dance floor when I was about 15 or so...then he joined up (I obviously made a big impression) and then we met again a few years later... and that time he WAS smitten!😂🤣
You could ride a tricycle and then you would't fall off.Many out there and three wheels are stable. Get it electric and fit a trailer or box on back for shopping.
I read between the lines of your post the comments of a strong spirit which will not let the troubles of "brother donkey" (as St Francis called the body) stop you from working to achieve your aspirations. Respect!
13000! Wow! I think 4000 is great
Don't be frightened of that perception. It's exciting and dynamic. Everything happens at this knife edge. The best read and original version of this theory. Complexity. the emerging science at the edge of order and chaos. M. Mitchell Waldrop. Amazon.
You will come out on the other side Cycli - someone as fit and motivated cannot fail to do so. However, u will be the age u are with all the ramifications of that, never mind the roller-coaster GCA/PMR and prednisolone put u through. Nothing wrong with being a wise elder - with a busy and valuable contribution to make. You Go Cycli! I and I’c like to bet, many others on this forum, are rooting for you. 🥳🥳🥳🥳
so nice of you and thanks. I've never considered age as a barrier or necessarily relevant, but I concede that I simply cannot do things easily I once did unthinkingly . It's a state of mind which sometimes sets artificial barriers to us achieving our goals if we just accept age as something unbeatable.
Hi cycli,
What a very articulate and accurate account of how PMR can make us feel so utterly robbed of so many of our health & lifestyle achievements, and can make a complete mockery of all the effort, time and dedication that we've invested in our efforts to stay healthy.
You expressed your feelings so eloquently and I know from the responses I've read, and how I've felt myself, that we all share your frustration, disappointment and despair at feeling totally helpless in trying to turn things around again.
I can't claim to ever have been as fit as yourself, but I have always eaten very sensibly, exercised regularly..... mainly at the gym 5dys a week...and engaged in some swimming and hiking. I had strong arms and legs and a very strong core and at just under 9st, a fairly trim waistline. My skin was lean and toned and I've always felt I looked reasonably good.
People would say I didn't look my age and I quite liked being told that....not because I was going all out to look younger than my years but simply because it was a lovely compliment to receive.
It's totally different post diagnosis though!
I gradually witnessed a complete change in body shape, slowly turning into a barrel on legs! My hair thinned and yet body hair increased! Muscle mass disappeared and skin on arms and legs became 'crepey', wrinkly and saggy. Like others, I began to barely recognise myself in the mirror, and when out and about, if I saw my reflection in a shop window I'd want to cry at the old woman looking back at me!
This condition does to some extent dictate how we move forward from these situations but I know from my own experiences that this doesn't mean we can't progress.
I quickly learnt that there'd probably be little I could influence in terms of my weight, body shape and overall fitness until I was on lower pred doses, so I decided to focus on just that, with safe, steady and slow tapering, trying to be patient and maintaining the health I had.
I'm now down to 5mg and about to slow taper to 4½mg and I have definitely seen 'progress' in certain areas.
- I've lost 8lbs in the past 5mths
- I've been enjoying longer walks
- I'm gradually building up endurance and strength at the gym.
None of these would be significant to a normal, healthy person, but to me they're massive, as they prove that with the correct mindset, a thorough understanding of the condition and a lot of patience, for many of us, there will definitely be a gradual return to a better state of health and well-being.
I know that at 64yrs of age I'm not going to be cart-wheeling across the meadow, but I do believe that if my PMR does eventually go into remission, then there will also be a good chance of a gradual return to a more active life, and I'll once again see some of the benefits from that.
The consequences experienced from PMR can be a huge shock, and allowing ourselves occasions to mourn our 'losses' is most definitely okay, and most definitely necessary ......as long as we remember that we're not a lost cause....we're just on 'starters orders' waiting to run!.... or cycle?? 😄
You've always seemed very resilient and I know your mindset and determination will be what gets you over this 'hump'.
Just don't overdo it.....slow and steady.
Wishing you all the best.
thank you for this Kendrew much appreciated. We are all in this together and for that I am so grateful to have everyone's experience to bounce off. We'll get through together
Absolutely!
I should have added that as I'm now at the stage where my adrenals are trying to fire up again, I'm obviously adjusting workout regimes, length of walks etc, to take this into consideration and therefore not exceed my capabilities.
This may be ongoing for a while but hopefully it'll prove to be just another (temporary) hurdle to overcome.
That can be a difficult stage so I wish you well. Good luck. I wish I could get that near. You will see a benefit I am sure.
Thankyou. I hope you will too. You just have to keep exploring different options till you find something that works for you. Sounds a bit flippant I know but your perseverance and determination will stand you in good stead. Just don't give up.
We're all wishing you Good Luck too.
I suppose this is almost as good as a therapy session even though I have never had . one so wouldn't really know. Everyone is so supportive. It's reassuring. Sometimes you just well up and feel sorry for yourself but that gets you nowhere. I've never asked for any help and always known that I would have to work out my own solutions to problems so this is no different really. Just another hurdle as you say. Sometimes people have stepped forward and offered help just like on here so thanks everyone. It helps to share.
“It helps to share”
Yes it does, and no judgments made either -that’s why we are here….
I love the simple wisdom of Charlie Mackesy.....
😀👍
I had to copy this picture and place nearby: Truly inspirational! Thank you for posting,
Hi Abikitty. As a relative newbie here you have obviously been reading some of the older posts for info. What picture did you copy, as there is no link/reference. Must admit that this was quite a constructive post with everyones kind and helpful comments. we all feel low at times.
As you can tell, I am very "tech-impaired"! I was. attempting to reply to Kendrew about her Charlie Mackesy post. Good to hear from you, though, as I am hoping to catch-up on your progress with your cycling protocol as it is relating to your symptoms and taper process. Prednisone has side-lined me and your posts have been so helpful and inspirational through your consistent message of hope.
that's ok. always click on the reply below the individual posters. It tells you reply to whoever. Nice of you to say so and it's always hard to keep looking at the glass as half full when you don't seem to be getting anywhere. Even though I appear still to be "going downhill" with condition I try to learn why and see that as progress if my understanding is enhanced. It is ammunition in finding an approach to combatting the effects and preparation for when I will be able to expend the energy I hope to regain That's how I try to see it. Everything we learn empowers us and helps to counter the sometimes negative or indifferent attitude of others. It is an invisible infirmity which makes it difficult for others to understand how debilitating it is. The physical manifestations only lead others to assume we are just getting feeble from old age even though we know differently. Unfortunately our uselessness loads others work and this irritates them because we still look normal. if only they could know, but then we honestly wouldn't wish this on anyone. As for me at this time my progression is that I am down to 16.5mgpred and have all my consultants and specialists and GP on the same page and supportive. My turbo sessions are still minimal and not sufficient to improve the muscle loss but slightly improving the remaining muscle tone. Swelling from fluids is much better controlled and heart valve is slightly improved so progress. it is going to be a long haul to sort these two conditions I fear.
We are around the same level of reduction I’m 0.5 behind you but have you been here before ? I got to 3.5 last time and couldn’t cope so I went back to 7 and this time I’ve been doing the 7 week taper.
Hi Bridge31,Yes...I got down to 2.5mg within the first year and then suffered a 'flare'.
At the time I was still working in school in a very demanding Nursery class and I was very naive and not as well educated about my condition! This forum taught me so much and I quickly realised that I was tapering too quickly and not really recognising or heeding the warning signs that a flare was imminent.
I was also at a dose where the adrenals were trying to 'fire up' again and this in itself is a tricky period where I should have been more mindful of how 'gently' we have to allow the adrenals to wake up.
This time I've taken it very slow and very steady and so far so good. I had a blip in Jan but I'm pretty good at assessing when I can begin the next taper and when to wait a little while longer.
I also follow the DSNS tapering regime, but if my PMR symptoms return and don't settle down, then I would know I'm not yet ready to be on that lower dose and I'd go back to the dose I was comfortable on. There are guidelines about how to taper but definitely no rules as we'll all respond differently when we taper depending on the level of PMR activity.
Hope that's helpful.
Hi Cycli. I can echo all that you've said, and I still don't quite believe any of it has really happened. but I'm still very hopeful that I will get some of it back.Is there ANYONE on this forum who wasn't strong, fit and healthy before PMR?
For the most part I doubt it. Such a waste of human resource. About time the powers that be stepped up and did more research.
I honestly cant remember , i thought i was , but it seems as if it was another persons life and not mine. I was in a low place for the first two years, coasted for the next one. I am now on Dorset Ladys tapering plan and all though i find it so hard to walk as have other issues with RA /OA its a battle every day, i am convinced more than half of my problems are because of the Pred ! Some are starting to ease and my mind is becoming stronger again ! So yes i may not ever be the { Normal version } of myself but as the dose lowers i am bloody well going to give it a good go ! Keep on hoping everyone. With my best wishes Viv🌷
Varies, as does life -some already had other issues -I had OA- and others took a long time to get diagnosis (PMRpro and me for example) and obviously lost a lot of strength, fitness etc during that time.
We didn’t all start at same level -won’t have same journey or be at the same level afterwards.
Twelve years on I’m in a better position health wise than I was before GCA- but that’s due to a variety of things -almost 6 years in remission, 3 joint replacements and now no longer a carer for late hubby… so some good, some not so good.
You don't have to try and make sense so much as ride it like a wave when surfing. The longer you can balance on the dynamic front the further you travel and surpass all else.
I share with you the love of reading and don't think anything beats the real copy. Kindle has its place but real print still surpasses all. You will be excited by this book as I was 40 years ago. You are entitled to know and learn as much as you are capable of absorbing. Enjoy. Bounce your ideas off me anytime. It's something to ponder whilst we try and get better.
I do understand much of what you say as a former runner.
What helped me was a recent visit to see rheumatology where it was pointed out to me that the fitness will have helped me to stave off some of the issues around steroids and PMR. Blood pressure is good and so is blood sugar. I'm looking at the hard work in the past as 'banking it' for the future.
I also believe you will incrementally improve as the dose lowers. The muscle memory will still be there.
thank you. Considering the sheer volume and serious nature of the drugs I have had to pump into my system over the past year I probably have to agree with your Rheumy. I never needed a pill for anything before. I do hope my system if recovered can flush the residuals out eventually.
I'm really confident it will, even if you need to stay on a small dose for life. I say this as someone slow tapering between 5mg and 4.5mg at the moment that as soon as I got below 10mg, then 7mg, I felt so much better and have real hope that I can build up again.
I know you started at a way higher level than me but I'm pretty confident that you will regain some normality for you.
that's hopeful. thank you.
Well mine recovered, and by the time you finish I doubt you’ll be any higher that I was…..
thank you. It's hard to believe looking at now but that is reassuring.
As a man you grow up with a cultural impediment which seems to favour being strong, resilient and unemotional. When my mother, grandmother died within a week of each other and my father 8 months later with my grand father 9 months before my mother a part of me died. This condition has somehow given a semblance of that back. 40 years on and I have to see that as a blessing. It's made me more empathetic and despite all the downsides it is a blessing.
We've talked about this before and I'm still amazed that you have come through this despite everything. You are resilient and I do hope you recover some of what you have lost. Never give up hope.
sounds like fun. truly memorable. Not the really hot one as that is torture. I've done some stupid stuff when a teenager like being sucked along behind a green line bus from Redbourn where I worked at a petrol station to earn to St Albans at 40-50mph in the vortex of the bus just freewheeling along the main road. If he'd braked I would have been toast. Was fun. Think the driver hated me as he tried to drop me when I had to accelerate starting from the bus stop which I always tried to be there for after work.
I so resonate with everything you have said. I am wondering when and if I will ever get my fairly strong body back. Or my thicker skin. I don’t know if it’s even possible, time passes. I’m am hoping to be off pred soon, what then, who knows.
No reason why you shouldn’t get your body back apart from the fact you’ve aged a bit during the Pred years which obviously has an affect- and you need to build it back up again.
It’s not like stop the Pred today -back to how you were 4years ago tomorrow. It takes time.
As for the skin, it will improve, but that ages too!
I’m encouraged by that DL. I have a friend who has been off pred for 2yrs now, older than me, and she says she IS getting stronger. So plod onwards.
Plod on for the moment..but a bit more than that in time 🌸
good to know
Hi Cycili
Thank you for your post. Reading it was as if I had. My thoughts and feelings exactly.
It is a long hard road as we all know. Keep positive and may you achieve your goals knowing there are others striving with you.
Please keep us up to date on your progress. In a year I have managed little progress for different reasons but I am determined and hope to make better progress in the next 12 months.
I am female, 73 in the next couple of weeks and still striving to get back to my classes in the gym.
Good luck and best wishes to you all out there.
Hi Cycli, I read your post with interest as I feel exactly the same! I have always tried to stay active and indeed was working for Asda standing on my feet for 8 hours a shift making Pizza! until I was diagnosed with GCA! I was on 40mg of Prednisolone in April 2021 and have been reducing but have come to a halt at 4mg. The Doctor told me that steroids cause havoc with your body-how right he was! I had to give up my job which I loved because of severe back pain, my legs and knees are swollen beyond any recognition, my feet feel as if I am walking on bubble wrap all the time, I have tinnitus and my hair is a dried out mess most of the time. I also “perspire” like a tap nearly all the time. I am supposed to be taking Methatrexate to get me off the steroids but can’t have them as I am on a waiting list!!! due to Covid and staff shortages . I, like you would wish to have “myself” back and hope that I will achieve that when I get off the steroids. It is very difficult to remain positive .
You've done well to get to 4mg. Probably adrenals kicking in causing issues. Others will advise as I'm nowhere near that. Keep positive and glad this post resonates.
As suggested by cycli have a look at this post re adrenals...but you may have also got to the level your illness actually needs at the moment..if so, no point in trying to push lower...
healthunlocked.com/pmrgcauk...
and from 40mg in April 2021 to 4mg now is pretty good going, so maybe ease up a little...
I would ike to suggest that all you describe there need not be the pred - because i experienced them all with PMR in the 5 years I had it before pred. I would wonder if you have overshot the dose you are looking for: the lowest effective dose and PMR-type symptoms as a component of your GCA have surfaced. You maybe would be better going back a bit.
And whoever told you that MTX will "get you off pred" is stretching the truth: for a very small number of patients it does get them off pred and for a few more it gets them to a lower dose of pred. If it were that good, they;d use it from the start, They don't. Prof Dasgupta, UK GCA guru, is of the opinion that MTX has no place in the management of GCA, But for many patients it doesn't make a difference to the dose of pred or the adverse effects are such that they cannot tolerate it. For me the fatigue due to MTX made that of PMR look like child's play and I had so-called pred effects I had/have never had while on pred alone.
What a great discussion! Really hits the nail on the head doesn't it in terms of the bewilderment and VERY mixed bag of emotional stuff that can go with these illnesses. By our age, most of us seem to have pretty well reached some sort of equilibrium and balanced way of looking at the world that works for us. Well most of the time anyhow!
So to have that all blown out of the water and knocked severely sideways is a bit of a shock, to say the least. Well, it certainly was for me anyhow and MOST definitely not how I'd planned on spending my retirement.
So whilst the physical aspects are challenging enough, in my opinion it's the emotional and inner readjustment that's the toughest by a long way. I have days when I really feel I've lost my sense of who I am and after 70 years that's not at all comfortable. I'm still coming to terms with first PMR and now GCA, and must admit I have days when I find it really, really difficult and just want to give up. All way too hard.
Trouble is, giving up isn't really an option is it? Mostly because it doesn't change anything, I'd still feel lousy, and there's the chance I might feel better if I keep trying things as suggested on the forum here. So I don't give up. But it's tough and my heart goes out to each and everyone here on the forum as my guess is you all have gone through versions of this doubt and readjustment too.
I greatly admire your attitude and determination Cycli and really hope things start to smooth out for you. Thanks for starting this post. All the best!
Hi Just read your post. It could have been me writing and I’m a female. I too was fit and healthy until PMR then GCA. My friends can’t believe that in a short time my body shape has changed and I don’t “feel me” and am not in control of my body. Let’s try and stay positive and think of things we have got and be thankful. Good luck.
thankyou
Feel very much the same. I was 68 fit and active. Now although I am more active it takes effort and need to rest more. I now accept things will never go back to how they were.
Yes! a lot to consider here Cycli. I was one of those very fit with sport and always on the go with big projects and foreign travel. Rather taking everything for granted in retrospect I must add. Then was suddenly hit, seemingly overnight, into a weak wreck. 5 years in now with PMR/GCA with several relapses. I learned among other things: think about what you put into your body. I was recommended books by Rineke Dijkinga and briefly they hugely changed my eating and cooking habits (i.e. my health)100% for the better. I also learned to take responsibility for not having managed my stress consciously (I consider was a factor in getting ill). There is always stress in life but now I prioritise. Everywhere on this forum over the years you can read: take time out. Learn to say NO. It's hard if you are a carer, grandparent, sport achiever, parent, career-driven or housework fanatic... but Nature has a way to remind us that we must look after our own precious organism. Reassessment and change is a kind of renewal I think. New challenge, new adventure.
I so agree with you. I had to take full medical retirement as a result of PMR and was completely desolate.
Teaching was one of my great joys and to have to make this decision was one of the hardest and saddest things I've ever had to do, but as you said...it was almost as if the universe conspired to give me what I needed by taking away something else that I thought I needed.
It's 9mths since I retired, and although I still encounter daily challenges, my life is so much easier. All the stressors are gone so my anxiety level is zero and I have no real pressure on me anymore. This has impacted hugely on my state of health, improving my physical well-being as well as my mental well-being.
Don't misunderstand me...I'm far from being the fit, healthy, active person I was pre-PMR, but I'm also a much improved version of the person I was when diagnosed 3yrs ago.
I may not be able to teach anymore but I now go in one or two mornings a week, voluntarily, and have the best time ever with those beautiful Nursery children.
So life isn't necessarily all doom and gloom with PMR. Far from it. You just have to find the joy.
I know exactly where you're conibf from although I am female and 78.I am down to 10mg but having muscle problems again. I thought I was doing well. I am currently waiting Dr phone call.
Up to 73 i was fit as a fiddle then lots of stress pulled me down.
I try to be thankful for what I can still do but down days can be difficult and therr have been times when I have hoped I wouldn't wake up but I hope to see st least one grandchild married and that
keeps me going along with sedentary charity work. Are there any crafts you could take up? My husband used to make cards and made picfures from wood (sadly I cannot remember the name of the craft) It was like a jigsaw to put together from small pieces of thin wood cut from a pattern. Might have been Marquetry.
Knowing I am still useful keeps me going.
Thank you. I have enough projects to last a lifetime.Have a look at my company website, well out of date now since we stopped in 2006. cerdan.co.uk When m/cshop up and running I'll get down to making some designs I have always wanted to make for myself.
Well written. I can identify with you in so many ways. Except for the manual work I did always kept lively and now feel absolutely shattered and wasted. I am close to 71 yo.
I am slightly vain in that I have to look my best with cool clothing and so on but don't feel anywhere like I did just a few years ago :/
I really dislike not knowing how I will feel from day to day.
I went on a three day mini break to my former hometown of Bath a few weeks ago and spent the last day in or on the bed in the hotel with room service bringing me cake. I felt hopeless.
I'm stuck on 7mg of Pred now. 4 months.
Thank you for Netflix and all the other streaming services
love Bath. Bit hilly for our condition walking but stunning. I'mnot responsible for netflix. Keep your hopes up. Life is good despite everything
As everyone has said - what a great discussion. Thanks for getting it going, Cycli. My pre-PMR life was incredibly active with running, swimming, cycling, gym, fitness classes etc and at 50yrs old I felt fantastic. My mental health was in fairly good order too, despite losing my Mum a year or so earlier. Then BAM!! Two and a half years on from diagnosis I can still run a bit - well, jog is a better description - I don’t cycle or swim as it aggravates my shoulders, I do a very gentle workout at the gym and I don’t go to fitness classes. I have saggy, crepey skin, age spots, hair in all the wrong places, thinning head hair and very dark circles under my eyes. I have really aged. My mental health is pretty dire and that, for me, is the biggest kick in the doodahs. I have lost “friends” as I have changed from being a happy-go-lucky person to one who is quieter and “not as shiny” (as one mate put it). I now don’t drink and follow a strict Keto-ish diet. My marriage is constantly on the knife edge as my OH has little patience for the new me. My teenage girls keep me going - I have no choice! - and that is a real motivator. Work is a good distraction but I am totally wiped out after my two days (I’m thankfully part time). Yet I keep on going. We all do, don’t we? And as we get to the lower doses it sounds as though thing will improve, and even if it is only slight improvement, I’ll take it! I still deeply grieve for the loss of that person I was and who I was going to be. I was going to travel the world and now I can only plan short trips to places that have decent medical facilities. I feel robbed of those grand adventures I was going to experience. But here I am. Here we are. This group is a community and I am so thankful that we have each other.
So moving and so young to lose so much. I am sorry but please don't give up. You will get some of it back and I fully understand the relationship side. I think we all do here. You are fortunate your daughters share your well being. Mine shares my wife's lack of understanding to put it mildly. We are all challenged by something They will come round sometime
ok. but what if our thinking about this and working with specialists gives us more insight> then we have new things to work on to improve
I have just read your bio and WOW you have been through it. You are clearly strong both mentally and trying to regain the physical side. And what an interesting life you have led. I think talking is a great healer, I had never had any therapy (although an interest in it) until my husband died unexpectedly over 6 years ago and it helped, it took time, but helped, not necessarily around his death, more understanding me and how I react to stress.But this forum is a brilliant place to talk things through. I am now wondering where you live with so much interesting archaeological history, fantastic. St. Albans was my old stomping ground as a young teenager! Keep on 'talking' cycli
Born in St Albans and lived there until early 20's. Seymour Road off Sandridge Road. As a child I was involved in some of the digs at Verulamium and was there when we dug up the lion mosaic on Bluehouse Hill. 1st job after college 4 year diploma furniture making at LCF was Collins and Hayes Sussex. Lived in St Leonards 4 years Staples the bedding company Moved back to Hitchin area to work for FIRA. Production consultant specialising in upholstery. Met my wife and been married since. Built my business from nothing and ran it profitably for 25years when we decided to up sticks and buy a farm for us to renovate and run. Then this got in the way. Near Barnard Castle near Bowes.
Love Barnard Castle, or 'Barnie' as my husband calls it....he grew up there and we have visited many times over the years visiting his friends and family. Love it.
drop in next time you are here
Ah thank you! I don't expect it will be any time soon unfortunately, but I can drop you a PM if and when.
do PM me anyway as would be good to compare notes.
Hi cycling t hink we all know a lot about how your feeling I was also very fit and active and have lost a lot of muscle but keep up with my swimming 4days a week and walking but also trying not to over do it and yes it's depressing when I look at my arms but reading everyone's journey with this horrible illness gives me a lot of hope. Take care Harry.
thanks Harry. will do
Thanks for another great discussion! My heart goes out to everyone who replied.
You are going in the right direction, albeit slower than you would like. Glad you got a good rheumy at last. I am sure you will be able to do much more when you are on lower levels of pred, and don't forget that it can sometime mimic GCA symptoms in some people.
I will echo what some people say about ageing. Around 2018 my friend, also early 60s, and I were doing a studio pilates class with two thirty somethings. We were all more or less the same level and were working towards the hard pilates exercises that need balance, strength and flexibiity like hanging upside down on bars to do exercises.
The young ones moved on but we have stuck with the class through my friend's skin cancer and my GCA and covid. But over the years, I realised that my body is fine doing ordinary exercises but doing anything fancy would be asking for problems. Some of this is due to pred, but probably more is natural ageing and joint problems through hypermobility. Now I am more focused on being fit and healthy for everyday life for the next couple of decades.
So I am sure you will be get back to being super-fit and put the rest of us to shame but I wonder if you will regain all you were able to do pre-PMR/GCA because of those extra years... Having said that, if your joints are good and it is just a matter of rebuilding strength and aerobic capacity perhaps you will. Anyway it will be much better! XXX
Thanks Viveka. I do hope to rebuild as much as possible and joints are all my own at present and functioning painlessly. I am resolved to never being able to achieve the peaks of fitness but as D2C said if I can enjoy my sport and visit the places I desire then that's good enough now. We hope.
For me it was not PMR that got me to where you are now but a back injury. It sidelined me and I got so depressed I was suicidal. I got on an antidepressant and had some therapy and my mental state got better. You might want to consider seeing someone for a bit just to learn some tools to help you cope when you're having a bad day.
Join the club unfortunately. I have had this PMR for 15 years. Through at least 12 of those years I used to go to gym 3 times a week, swim at least twice a week. During this period I manged to lose some weight down from 14 stone 10lbs to 13stone 7lbs and whilst taking 10mg. I used to work 3 days a week, 11 hour week. I'm now 72 and on 7 mg BUT now I've lost all leg and arm definition. Put weight on back to 14st 11 lbs, A pot belly which I hate. On top of that I've now developed neuropathy in both legs. My balance is appalling and everyday when walking is a different experience, like learning to walk again. I'm good at falling over, I can fall over a small stone. I have no energy and to be honest I feel absolutely fed up with the whole scenario. Ok there are some good days and when I'm like that I feel like a spring chicken and it's great. But oh boy do I feel it the following day. I saw a consultant the other day who brightly informed me that as I have been on this dose for so long, there is certainly is no chance of the glands ever working properly again. That cheered me up immensely! I dont know what the answer is. I suppose I'm better off than most people. You just have to grin and bear it and get on with life the best way possible. We should start a club..... old codgers with PMR!!!
Oh Bobbury 15 years and still working at it. I take my hat off to you and thank you for sharing. That wasn't what you wanted to hear, but we all know just how disconnected somemedics are. D2C adrenals have restarted and he's been on it longer than you. Dopn't believe all you are told.
Hey thanks for that. You do tend to take what consultants say, sort of god speaks you listen and you do!!
Yes we do and there in lies the betrayal of their professional ethic. It is their job to help us to understand and improve our health and this attitude of arrogant superiority and control which all too many exhibit is an impediment to this. Always remember that they would not have a job or profession without us being sick.
Well put sir! But do you know what gives me the hump about all this. It wasn't until I got on this forum that I found out stuff that the no one in medical profession took time to tell me. This forum has been brilliant for me and the people who run it are really marvelous and so are the people who respond. Everyone involved deserves proper recognition.15 years on some bright spark of a consultant informs me, not worth trying mate, the glands ain't going to work after all this time. Bloody brilliant that bit of info. But do you know what. I'm going to try and try again!
There has been a shift in their training from CARE being the core to the DISEASE being the core. that dissociates them from the patient to centre on the condition and thus they disconnect. We become something to observe almost as an experiment. They are the experts and we are an opportunity to further their knowledge. They mostly don't try to dig into our experience because they consider us to be lacking the ability to understand the detail of what they know medically and it would take too much time and effort to explain everything to a layman.
Absolutely spot on Sir! I think they feel we don't have the capacity to understand or the intelligence to take in what we are being told. And the more gobbledygook they give us they hope we won't ask any questions . They also have this myth that we have no desire to know about our condition and then fob us off with some sort of medicine and hope we don't come back. God forbid if we challenge them on their synopsis. And Jesus don't mention that you've looked up your condition on line!!!
To both Bobbury and Cylic.
I think this discussion has gone far enough this site is for people with PMR & GCA and to give support and help.
To digress into other subjects would be best done by private messages.
I, for one, cannot complain about medical personnel in general and would never 'lump' one person's attitude to everyone's attitude in any profession.
They are human's doing the best they can, with what they have been given and I don't believe that anyone person, including me, is perfect.
Hey there is no malice here. Its observations through 72 years of having been in and out of hospitals with dealings with GP's and consultants, of which 15 years having to deal with PMR, As i have said on many occasions, I learnt more through this forum about my condition than I have received from GP's. Only the other day I had to go to A & E by ambulance. The attention I received from doctors and nurses and paramedics was second to none. All those involved were just amazing and hard working and couldn't do enough to make me comfortable and made me feel I was in the right place to be treated! I'm currently seeing a consultant at Addenbrookes concerning my neuropathy, who I have to say is the best consultant I have seen. He takes his time to explain whats happening and what course action he is planning to take.
I have to say that i t is only my opinion and was supported by a number of retired professionals and time served nurses I recently spoke to. There has been a shift in emphasis on the way new professionals are trained and it isn't intentional but the result is a dissociation from the personal to impersonal treatment. I accept there are very many caring professionals who do pay attention to their patients, my practice is one such and apart from an individual I no longer see they have all been exemplary. Correspondence on here belies that for many and is very relevant to their state of mental health in dealing with their PMR and GCA because as you know it increases stress which is a major contributory factor.
just to add. I agree that the diversions whilst interesting could be done by PM, but you will remember many such of interest that had nothing to do with the subject and lifted peoples thoughts and spirits at the time. As for lumping everyone, I did make a generalisation, but it is backed by others opinions and observations. I would never be so specific as to personalise it as that would be unfair on the individual as they are not here to answer. As to doing their best, I do question that in this way. They may think they are giving best advice but we are entitled to question that. That after all is the function of this forum and as a founder you must recognise that this would not exist if the profession was "doing its best" when you went down with GCA. They are trained professionals who MUST keep up to date with the latest findings and keep searching for new and better ways to understand this condition. Many do not and adhere to out of date and sometimes dangerous advice they give to patients. Their consultations are often one sided and arrogant. Many on this forum would attest to that. They are human beings, just so. I wish some would act with a little more compassion and empathy. It is totally related to PMR, GCA and our condition and treatment.
I can understand how you feel and because you have experienced a physical decline from quite a high point it is that more acute. I worked on the front line in mental health for twenty five years with a big caseload and ever increasing responsibilities managing Males with very challenging behaviours alongside their mental health issues. I think I did it well, certainly I was respected by my colleagues and developed good relationships with some very difficult personalities client wise but began to feel stressed and exhausted and didn't feel I was dealing with pressure as well as I used. I was having continual shoulder pain on the left hand and couldn't sleep on that side, my throat constantly needed clearing and my voice was changing and and the side of my neck seemed a little swollen but absorbed by the demands of the job I just ploughed on putting it all down to the work. Finally after handing in my notice (I had intended to leave at 53 as societies expectation of mental health services was constantly ratcheting up and was and now is unrealistic and over diagnosed and was getting just too much to cope with) I saw my Gp and was sent urgently for biopsies and Throat Cancer was diagnosed at stage three so it had been developing for some time. Clearly it had been wearing me down for a period of time and may have accounted in some part as to how I was performing. After treatment GCA developed and as a result of a series of avoidable misfortunes (in my opinion) I went blind in one eye and have also developed Osteoradionecrosis in my left jaw which causes pain and has led to the loss of feeling in my entire lip and inner mouth. So quite a fall, I was never as physically active as yourself and not a craftsman so there is a difference. I was a qualified professional proud of my work and within months went to an unhealthy tablet popping heap, retirement holiday? Fat chance, I had to stabilise the GCA and felt too vulnerable, imagine the curse of flaring up abroad outside the EU and trying to get into an A+E to explain what was happening terrified you are loosing what sight you have? No thanks, and when eventually I was placed on Tocilizumab after a protracted battle to get a diagnosis along came Covid so it was a Howard Hughes existence for two years. I have now just tentatively started taking short breaks in Britain and occasional socialising. I was joking with a nurse at the hospital that due to my compromised immune system I am worried about going anywhere due to malaria (which is making it's way North) or the myriad other pestilences the God's whimsically may choose to cast at me. I said perhaps I was consigned to holiday's in Antarctica being persued by Polar Bears, perhaps I would have a better chance of survivability and therein lies the key to how I have coped, grim humour. I laugh where I can and being a lover of Ancient Greek history am aware of how the God's have their sport with us, fate is a humourless Psychopath so I laugh at it and claw back what I can whilst I can for eternal oblivion beckons us all forward into it's unyielding embrace. Good to finish on a poetic flourish.
Wow. makes my issues seem trivial and thank you for sharing. I like reading the works of Kahlil Gibran. such insight. More reassuring than the fickle Greek gods.
Thanks, I will look that name up, philosophy or religious? I do avoid the Roman hijacking of Christianity to preserve it's autocratic male power structures to this day but find Marcus Aurelius' Stoic "Meditations" helpful alongside his correspondent Seneca one of the more "Aware" Emperors.
Poet, philosopher
Unusual to meet the manner of language with a young attitude attached to it, with such erudition. Cycli you are "unusual".
don't like boxes but do like "unusual" thanks
The Romans were nothing if not pragmatic. Piggybacking Christianity was a very clever mechanism for rule. There was always the iron fist if needed but integration and assimilation always gave better tax returns.
Very true, they stole Carthaginian ships, broke them down and re-engineered them in kit form to produce a navy in little time, ingenious.
they invented mass production and factories for example mosaic production. They invented the arch for which we should be forever thankful and so much more.
Totally agree Cycli apart from Guaram? that Fish sauce they brewed in Tunisia? oh no way I would want that on my chips, bad really bad🤮
Wow that was something else! I like to humour bit. As I said previously I'm good at falling down. Once at a race course I feel from the top of the stadium to the bottom. At the time I had a pint of bear in my hand and everyone in path tasted the real larger it was. Everyone though I was drunk!! Another occasion I fell down a step no more that 20mm, it was in front of a car showroom. One minute I was standing next minute laid out on the floor. Not to feel embarrassed I jumped up like a jack-in- box, nobody noticed. I went behind some cars and done a sort of Basil Fawlty thing, bent over biting my hand in pain!! I could write a book on falling over. The downside now is, I've damaged my knee and need a replacement! Dont know how that's going to work with neuropathy but hey ho of to work we go!!!
Oh man, thanks, I love the occasional absurdities of life, humour is about the absurd helplessness of our lives at times and you really just have to laugh at it.
Oh me too, Bobbury! My specialty is toppling off 4” (10cm) steps. Broke my shoulder and wrist that way. Also when picking my mum up from a scan at our local hospital, I tripped over a building works plank, did some sort of cartwheel and landed on my eye/forehead. Was quite knocked out. A nurse came out of A&E and I could vaguely hear her declaring a ‘major in incident’ over her radio. And so on and so on……🥹x
that's more than an ouch. it's so easily done and afterwards you feel angry at yourself, and annoyed that you now have to get better from that as well as the other stuff you were struggling with. OR you were feeling just dandy that day and now you aren't.
At that time I was generally pretty dandy, managing various conditions but generally okay. Was just very tired, like so many of us I used to push myself to my limits, and then some…..Still do, in a way, but have had to learn new limits!
Oh dear, I've dome some stupid things like that but not as bad though. Once I was walking down the high street looked across the road saw something that interested me, walked off the pavement, fell over, rolled across the road like one of those stunt actors and then jumped up. People who saw me do it were aghast. You ok, " yeah thanks, stupid kerb" Walked away as nothing happened, went round the corner I felt this wet feeling down my leg. Yep cut my leg open and it was painful!!!
It's always that wet feeling isn't it. I'm considering taking a medical dressing kit with me now wherever i go. Blood thinners hasn't helped.
Absoulutely, Maybe one of those army medical back packs. It could also serve as a sort of cushion!!!
👍 So, just to illustrate variation. Last day or so.... Yesterday 27th woke, swelling in legs and feet slight. Breakfast, meds 7 types then, 2 lunch,2 before bed, low energy , light day duties. BP and heart ok. walked Rex in afternoon and had to stop every 300m to get breath and recharge, cooked supper, rested toilet late, bled from burst pile not usual but happens every 1 or 2 months or less, bath 1am to lessen swelling fell asleep woke 5am bed for 4hrs, legs good, energy better. Easier walking and balance. Basically short on energy to sustain anything bet no symptoms. on 22.5 and going to try 10% drop today. Usually a 2k walk but hilly with rex. Light pottering around farm but nothing heavy as simply not possible at present. generally weak but active. Today I feel quite good so let's see.
Great post! Carry on laughing in the face of fate, AM, as that’s your way, and keep up the poetic flourishes 😊 I too was devoted to my work and miss it terribly…..don’t fancy the idea of polar bears, so think I’ll holiday locally for the foreseeable. Take care xx
they do look cuddly until up close. serious predators. I'm staying clear.
Hi Cycli. I have a similar experience to you I was diagnosed with PMR 18 months ago and within weeks my life changed completely. I was then 78 and able to play golf 3 times a week walking the course, I was playing in a band, making furniture as a hobby and climbing on the roof when necessary to carry out repairs. Suddenly I was unable to do these things and couldn't even motivate myself to do so.Thankfully I have no pain since being on pred, I started on 20mg a day and now I'm down to 6.5mg a day following DL tapering plans, so far so good. My major problem now is fatigue and depression, I never ever thought I would suffer from depression but I do.
I'm afraid I cannot offer you any advice but the fantastic ladies on this forum I'm sure can do that. I can just empathise with you and let you now you are not alone in the way you feel. I can just say don't push you self too hard as PMR is a life changer which sadly we have to accept and adapt accordingly. There are still many things we can do but at a slower pace.
Finally I have to say thank goodness for this forum and the advice provided by the members.
Best of luck.
Totally with you on all of that. I was diagnosed in my early 50’s. Before that I could cycle, run, did martial arts. Sang and danced in shows. My grief over the loss of life was tremendous. I think it is underestimated and under treated. I’ve gone from 50 mg down to 7mg. I’d put on 4 stones in weight in such a short period of time. People would walk past and not recognise me. I stopped singing in public and avoided going out. Now I am a bit more hopeful but I have no rheumatologist due to staff shortages. So ridiculous as it seems I am managing myself. I’ve lost 3.5 stones and starting to build up my wee sparrow legs and counteract the pred belly. A major factor for me was having a project or a goal. I set out to do a camper van conversion. It’s taken me longer and cost more than I had intended but the hope of getting away on my own terms was what kept me semi sane. Without it, I hate to say it but the prospect of not being around seemed a better option.keep positive and I wish you every success on your health recovery journey.
" It’s taken me longer and cost more than I had intended"
it always does!!!!!!
you may be right, but since I have been conscious in this world I have never been able to stop my brain thinking and trying to solve what is there to challenge us in whatever category it arises. I am old enough but not wise enough yet and it's just the way some of us are.
This whole discussion has been an eye opener for me—everyday I read the posts where people are taking vacations, swimming, jogging, biking, golfing, socializing, etc. and I feel lost because obviously I’m far worse off than most everyone else. Or so I thought. I too was into physical fitness—a runner, an exercise nut, etc., was even asked to teach an adult physical fitness class at the ymca. Traveled the world. Gourmet cook (self proclaimed). Avid gardener. Entertainer. Then poof! At first I had hope, after all, I could do anything for a year, couldn’t I? Then 2, then 3, onwards and upwards (downwards) until 6. No stoppage in sight. For me, talk therapy and sick day rules and any attempt to keep up with even a semblance of life has not worked. The muscle wastage, the fatigue, the frail old person who looks back at me in the mirror is someone I don’t know, don’t want to know. She doesn’t look or act like her friends the same age. Thank you for your post, cycli, because there is some solace in knowing (finally!) that I’m not alone. I thought I was.
Thank you for this thread. It gets to the core of how most, if not all of us, feel in our attempts to adjust to the changes thrust upon us. It can be a long and difficult road, longer for some than others. The longer it is, the more 'extras' seem to be thrown at us. This time of year I tend to mourn my past activities, but that is more measured now. I know I will not be able to do some of them again, but on the plus side, I think I am better at managing things, both mentally and physically. It is really helpful to see everyone's thoughts in this thread, thank you and I hope you recover some of what you wish.
I echo that Herdy. I never thought it would get such a response but I am so glad people feel able to express what they also feel . I don't profess to being able to really understand others, after all, who really knows another's thoughts? But somehow by trying to understand ones own issues honestly it offers others the means to relate and on here we can be open and get it off our chests. It has certainly helped me over, as someone said, this hump. Thank you everyone.
I understand exactly what you write about. I was diagnosed in 2014 prior to that I lived a healthy lifestyle, and prided myself on my hiking ability with much younger companions. I rode a bike for 50 miles plus. I always thought I would have this physical being for many years to come, little did I know what was around the corner. Since PMR took hold, my lifestyle changed dramatically. I sold my bikes as that seems a distant prospect now, if at all. I can no longer hike with my friends, unless it's under 6 miles and not too many hills. Otherwise I get the deadly fatigue and wonder how I can make to the end. I saw one of the after hike photo we always took, I looked dreadful, red in the face, even my lips were blue. I'm 74 now and my PMR goes up and down. I tapered to 4mm Pred, but then came the flare and I was up to 20mm of Pred to deal with it, now i'm beginning the slow taper once again. Like you I put on belly fat, I'm 10 lbs heavier than I used to be. I still consider myself luckier than a lot of others on here, compared to some, my symptoms could be a lot worse and I'm thankful for that. Good luck to you, you are not alone..
Thank you for your post. You are not alone…I too have always been active and healthy eating; yes, it is frustrating and mind boggling how you can feel one day and different the next. Aside from that, whether one is very active, moderate or casually active I have decided the best way to get past this and help me is not look at the - I can’t run, my stride isn’t as wide, etc. I continue on if I can and if I can’t then I do some type of exercise leas strenuous. I do push and challenge myself and do the best I can and keep moving for myself and for those that would love to but can’t get out of bed that day, etc. It is a debilitating disease as we all know, “It may not be a good day, but there is something good in everyday!” Keep the faith and to our restored health! 🤗
That's another thing about this disease. So I do try and walk, got myself a dog. On some days I'm walking along thinking this is a good day, no pains, walking doesn't seem so bad. Then all of a sudden some person comes striding past. I look at their strides and think why can't I do that. Yes I can, I say to myself. I'm having a good day. So off I trot looking at their strides, trying to emulate them. Yes I'm keeping in pace...... ho ho well that lasted all of 50 metres got to sit down now. Dog looks at me and you can see what he's saying.....Idiot!!
No good comes of comparing yourself to others with PMR-we are all different-and certainly not to someone how hasn’t got it! You can only do what you can do -to your best ability.
Have to say..listen to the dog 😉
you are probably right DL but where would we be without the Bobbury's of this world. It is that infectious optimistic attitude which fires our enthusiasm and should be encouraged. Not the falling over so much though.
We all need a chuckle - as you know I almost always see the lighter side of things, but all I was saying is there's no point in comparing apples and pears... as we know on here there's not a lot of point of comparing apples and apples...🙂
quite agree. Got a cycling friend of 20 years coming to stay. Don't know how he'll react as we haven't cycled together for 2 years. Don't think he'll recognise the new me. Organised a cycling friend to do a ride with him. I'll show him how to sharpen his chisels properly. There's always something positive one can do. I'll cook something for us all and we'll have a good time socialising and talking over our rides of the past probably.
Yes the dog does look at you and is probably wondering why - dogs know when people are ill, quite often before they do themselves.
Dogs have a very sensitive sense of smell. This can be useful in the medical world, as dogs are able to sniff out certain diseases, including cancer.
Think I am daft? I do most of the time but:
Yes, me too. I understand completely..🙏
So many have already responded because in sharing your story, we see common ground in our own. Indeed, we do “get it”.
I really do feel for all the formerly “athletic/active” PMR/GCA patients as the road to acceptance, I’m guessing, is all that more difficult and complicated. The contrast from pre to post PMR/GCA must be so pronounced and difficult to process, not to mention frustrating as you have dedicated so much time and energy to your health and wellness. All this adds up to accepting your fate all the more difficult.
I’m also quite aware of aesthetics and body image on top of limited mobility. In the end we can certainly not feel like ourselves OR look like ourselves. Muscles waste, fat shifts, and for some of us thinning frizzy hair!
All this to say you’ll get there (meaning acceptance and getting used to the “new you”). I truly accepted my PMR about two years in when I finally got a medic-alert bracelet engraved with “PMR-prednisone” which serves to remind me daily. Now that I’ve been diagnosed 4+ years (and on pred since then), I’m quite used to having an autoimmune disease and all that comes with it.
Remember we are here with you as go on this journey. Sending you good vibes.
On high doses of prednisone sodium is your enemy, water is your friend. Drink 64 oz. of water every day and limit sodium intake to a maximum of 2000mg per day. I do 1250mg per day, which is one teaspoon. Second, don't be too gung ho on exercise. Early on this illness overdoing it will trigger a flare and set you back to square one. Everything about this illness is frustrating. Slow and steady is the way to think about it, both with pred reduction and exercise tolerance.
thanks for this. I do drink that and more. The water tablets are beginning to help.
the water pill in my Valsartan bottomed out my potassium a few months ago. Make sure you eat a lot of foods with potassium. Carnation Instant Breakfast is wonderful for potassium. I had to take potassium pills for a month. They are not fun
I can’t help wondering if people like us (type A, always on the go, testing our limits) don’t just wear ourselves out! I look at this disease as a huge warning. The day I came down with the headache from hell and the start of temporal arteritis I got up really early to water the garden, then I made muffins, after that I played pickleball, did I mention it got to 38 degrees that day? Then I went to a flower club meeting, probably stopped for supper, but then spent four hours going back and forth over a fence to put a pump in the pond and joining miles of hose to water my garden. Midnight the head ache struck and I was totally bewildered by it. Me??Anyway that is a year ago. I am lucky that medication has given me back my energy. But my philosophy on life has done a 180. I could have had a stroke, a heart attack, been dead for a year. But I was given a second chance. I no longer work til the last speck of light, I can leave an unfinished job, I don’t care how many pickleball games I win and I am not afraid to ask for help.
This disease affects us all differently, don’t give up, value the good things in life…they are still there, and I wish you well…..
sorry not to reply. Been trying to manage another confusing situation. Seems to be finally improving in one way. A thoughtful and philosophical response and agree with you. Even if I got everything back and recovered after this I now know that the balance of what I do and what I choose to do would change dramatically. I have learnt a lot in a year
Thanks for this post Cycli. A lot of us are mourning the loss of the person that they used to be. My friends and husband are all several years older than me, and my stock phrase for many years was 'I'm only a child'. I honestly thought that all of these ageing problems were for other people and that when life threw something at me I would just deal with it and sort it out. Let's hope that we can eventually find our former self again, or some version of that person that gives us fulfilment.
Indeed Cycli. So, back to your reference to the Cambridge survey, at least the mental health aspect of that massive change is recognised to some extent and being evaluated.
yes that is so. I guess what I am trying to say is there is a difference in dealing with the grieving for what you had to being in control of your basic thinking. Whatever situation I have been in I have always been able to separate one from the other and rationalise the situation. I can't speak for others as we all have different ways of managing. That's why I have never felt the need for therapy. It's like I have another person inside my head asking questions and challenging my assumptions. That person tells me this forum is a good place to balance.
Invaluable, and made so by contributions from such as yourself. Very good luck with your next reduction, I hope that it leads to the energy to resume your turbo sessions.
Just reporting that it hasn't so far. The fluid issue is now finally improving but there is an issue with faintness and I think they are connected. Trying to understand that now. Even walking about shopping brought it on. Seeing GP today to try and get to the bottom of this.
Let's hope that between you you can find the connection. Keep us posted and keep positive! Such a high level of fluid retention must be absolutely exhausting.
thank you. Was apositive consult. seems the drugs to assist fluid removal are contributing to the faintness. I've got to be patient and not be too active for a few more days it seems. Not in danger apparently and the fluid is reducing so heyho.
Great. At least you know why and that it will sort itself out eventually.
not sure now as have to have anothe rblood test to look at kidney results. probably the same drugs..
Put one thing right and another goes wrong.... Hope that your doc gets the balancing act under control soon.
hope so too. they seem unconcerned. I know mine isn't but they say try not to worry and I said try living with this day to day and say that. She smiled and I know she genuinely understood.
A little bit of empathy can go a long way .
just reporting that whilst fluid retention is improved not much else is. it's been a steady decline in physical stamina and just can't sustain any activity. The thighs are burning like an earlier post described and it feels like the muscles are all affected. I just have to go and elevate the legs until it stops. I simply don't understand this phase and it has been going on for over a week or two.
When do they burn? After activity?
Not always now. It can happen whilst sitting.
Just thighs? Have they checked for blockages upstream?
just thighs. What "upstream" blockages?
In the abdominal arteries compromising blood flow to the legs. Alhough I would expect it to be more than just thighs. OTOH - my first severe PMR pain was claudication in the thighs only when using the cross-trainer.
To All
I have met, many in other professions to which those words can and do apply.
I have also met quite a few who are not.Human beings are diverse and different and all of us can be guilty at what time or another of being arrogant, controlling etc.
Not one of us has no failings.
This correspondence should cease in the public domain. If you want to continue please do so by using the private messaging facility.
This site is really to help people with PMR and GCA and we are straying from the prime purpose which is help and support.
When we formed this charity we had aims as follows: they have never changed.
" Our vision is a future where everyone affected by PMR or GCA receives fast, effective treatment and the best possible quality of life.
Our mission is to inform, support and connect people with PMR or GCA to improve their quality of life.
To facilitate developments in diagnosis, treatment and research.
To be the ‘go to’ destination for information and patient representation, as specialist on the PMR/GCA patient experience".
I can assure you that progress is being made today. Joining the charity, which is run on a shoe string would help to speed up the process.
jinasc - a founder member.
You may be right right Jinasc but ask yourself whether everything discussed here has been initiated and fed by our reaction to contracting PMR and GCA along with the effects of the medications we have taken and the task of trying to understand what is happening to us and the coping mechanisms we adopt to manage day to day. For some the prospects are bleaker than for others. Happy to talk to anyone on PM's about anything that has cropped up here. Everything discussed on this thread has emanated from a common bond between individuals who are on the PMR/GCA journey. Their experiences enrich our understanding and simply put into perspective the way we are feeling at at one moment. I cannot see why this should not continue in the public domain since it does not deviate from any of your founding principles.
good postD2C and helpful in explaining how others react to PM's. Maybe you aren't the only one who feels that way. I on the other hand don't react that way and would always welcome the opportunity to converse on anything of interest. There are things that people sometimes prefer to discuss out of the publics scrutiny or simply topics of interest they may share in common which as jinasc says are not pertinent to a specialist forum dedicated and moderated to stay on topic.
Just so. I posted because I wasn't feeling so good about my self and have been astounded in how much resonated with others. It helps to be open and honest in how you feel however difficult it may be sometimes. The reward from seeing others' responses has been immeasurable and has helped enormously. This journey is hard for everyone and sharing our experiences is valuable.
Timely post. For weeks, after reading many comments, have wondered why it seems that so many of us considered us to be ACTIVE/FIT and yet felled by PMR? Is there any connection as to why our bodies cannot resist this happening to us? Regardless of age, because we were always so active in sport, leisure etc. and yet, our immune systems have failed us. It has boggled my mind. Perhaps we have inherited some of these genes and were fortunate enough not to have been stricken earlier in our lives? Just musing about this because, I, too was always in good physical/mental condition and also supremely shocked when diagnosed. Being so healthy, was also reason that I did not go to doctor as quickly when experiencing double vision! Had never experienced poor health. Anyway, just wondering if there is even the slightest hint that being too fit made us susceptible. Sighhhhhh
I doubt it - I suspect they are over-represented here because they notice it more and protest more.
I think it is just that our type of personality pushes themselves to the limitand then keeps pushing as we genuinely believe that the body will develop and adapt to anything we decide to push it to. At some point it decides enough is enough and if we don't have an off button it will have to design its own. Then we are no longer in control and have to listen
Just reread this D2C. Randomness can't be understood. It's random. By their unpredicted actions they form their own pattern given time. They used computer fractals to mimic the way organic compounds and cellur organisms would collide and recombine to form new structures of greater complexity. It demonstrated how single cells couyld become multi cellular and form complex life forms. Biologically new forms appear through random contacts of billions of interactions. Socially new relationships form. economically markets alter. Taoist beliefs seem the closest we come to living within this theory. The acceptance of what is and what is happening and then not trying to change that but recognising it and managing it whilst trying to make it work better.
how did you get on with the book?
Absolutely. When I was first diagnosed with GCA and on 60 mg of steroids, the ‘I’m just a random dot in the scheme of things’ really struck me. Acceptance is so difficult on this roller coaster. The unpredictability of each day, the fatigue and inability to plan any social life is very hard. Couple that with anxiety, effects of the steroids and long term nature of this illness, the low days are very low, especially as we head into winter. I know I just have to hang on in there and follow my body’s needs but it’s hard.
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