I've learned from this extremely well informed and very helpful group that this journey could well last 6 or more years. These are the years when even the vast majority of the "healthy" go through changes in energy levels, fitness, muscle strength, mental agility, etc, due to the normal process of aging. (Obviously there will always be exceptional cases, like the 93 year-old woman in my Pilates class!).Our bodies are no longer young and my concern is that when I come out of this tunnel, my fitness level will be seriously compromised because I can't walk as far or as fast as I used to due to this condition, and 5 yrs from now when I'm 70, I'm anxious that I will never feel as energetic as I used to even when/if PMR and GCA go into remission because you don't feel the same at 70 as at 64.I suppose I'm looking for reassurance from anyone who is out of the tunnel that life can go back to some kind of normal!
Aging during the PMR/GCA journey. How to know if ... - PMRGCAuk
Aging during the PMR/GCA journey. How to know if we can ever recover our pre-illness levels of energy and fitness
Interesting that you should raise this. I was first diagnosed with both GCA and PMR in July 2017, after 4 months of symptoms. On 10th July I have an online appointment with a rheumatologist when , if all goes as predicted, I should be discharged and told to stop medication, just 6 years after diagnosis.
I'm now 72 and still have the recurring problem of extreme fatigue which means I have to continue the "pacing" techniques that I adopted when I first became ill and to make myself rest at frequent intervals. I've tried to work out whether this is simply the fact of being 6 years older, or some residue of the conditions or my adrenals not quite working properly yet. What has definitely gone is that enveloping sense of malaise, of never really feeling well, and I'm not sorry to lose it.
That's very reassuring to hear. I struggle, even on good days, with a feeling of not being completely well. Glad to hear it eventually went for you 🌼
I think you have answered your own question - once you are over 50 or so, the changes in 5 years are quite considerable even if you are continuing at a similar level of exercise as before. And it isn't just with something like PMR, My neighbour, in her early to mid-50s fell about this time last year, breaking her hip and shoulder. Before she climbed and mountain-biked up the local mountains, most of which go up above 2000m. Now she says she really struggles - and last week toppled over and broke her arm just stopping and getting off her relatively new electro-mountain bike, bought to continue going up mountains. SHe is very surprised and upset at the difference in her fitness despite having really worked hard on the rehab.
If you’re looking for a perfect answer or guarantee nothing will change - I’m afraid there probably isn’t such a thing. In the course of 6 years you will slow down a bit -with or without GCA/PMR.
Plus it depends on your general health prior to these illnesses.. some may think they have more to lose than others.
In my case aged 63, I had osteoarthritis (certainly in one shoulder and one knee), marginally raised blood pressure, and slightly overweight (all family traits)… so not exactly a prime athlete.
Can’t say that GCA nor Pred exacerbated any of those (although 18 months of undiagnosed inflammation may have).
Today, almost 7 years into remission -and 13 years on from first GCA symptom, I am more active (thanks to joint replacement surgeries ), Pilates, and a daily walk. Having lost weight, I now weigh almost the same as I did at 18 years old - albeit can’t sprint up a hockey pitch like I did then.
Brain is still functioning (children may disagree ), mental health is good despite losing sight through GCA and being widowed during my illness (but that would have happened anyway).
There are a lot worse illnesses to come through than GCA and PMR - I’m just glad I have and intend to enjoy life as well as I can… after all I may be run over by a Viking chariot tomorrow!
I'll keep my eyes peeled for a Viking invasion in the offing! And I agree, there are far worse conditions to have to deal with. So, onwards and upwards 💮
Well if there is, I’ll be there!
Lovely heartening reply. 🫂
Vikings are a blighter. You are an inspiration. Damn I have just shed a tear a bit pathetic this morning. 🤦♀️
If you haven’t seen this before - might cheer you (or not) 😊
healthunlocked.com/pmrgcauk...
Genetics are amazing. I do wonder if there could be a genetic advantage to polymyalgia. I think they discovered recently that the gene that causes bowel problems like Crohns also gives resistance to the Black Death. Maybe polymyalgia falls into that group as an auto immune disease. We are very geared to this sort of thing in my household as my best beloved is an archaeologist and my elder daughter a plant geneticist. Mind my younger daughter is a wine person which is much more useful. 😅
Agree with your last comment, although others obviously have their uses ..😊
you must live in a dangerous area, bloomin Vikings 😀
Deepest Darkest Dorset! Very scary..,,,😉
That's so cheering, DL... feeling very sorry for myself at the moment, on 3 and a half mgs Pred, last month to go on TCZ, absolutely no energy, pains in joints, walking around like a zombie. Very busy with activist group trying to keep open my mother's supported living home; started doing Air B and B for necessity, getting through it all, but am just sleepy jelly, and often breathless. One good thing though... first grandchild, a grandson, mu daughter's one month old. I have an hour and a bit tube journey each way to visit him, but it's so worth it... he's wonderful. So yes, life could be worse! Warmest wishes to all, Karen
You are busy - hope you soon feel better and can sort out things for your mum -that whole situation is very distressing for many.
It really is. Abbeyfield, trying to close 43 houses to remedy their financial woes - coincidentally in very prestigious property areas. Such a surprise...!
Yes it is -quite a lot on local news …
I’ve noticed an initial increase in my physical capabilities from age 55 when I was diagnosed with PMR and the early years on higher doses of pred, up to my current age (61). I was very inactive and overweight when diagnosed so my story of increased energy, physical activity, and weight loss is often different than other folks who struggle with fatigue and weight gain.
The last year or so I noted I was “slowing down” and wondered if it was in part due to aging and lowering my pred dose. All the while I’ve watched my very fit, active husband struggle with shoulder issues (due in part to years of lifting weights), and he has had to make accommodations in his activities like me. The difference being it is very much a lifestyle for him so the adjustments are more difficult to accept (as is likely the case for all the fit folks who are grappling with PMR). He has said more than once that he just couldn’t imagine being diagnosed with such a difficult condition that affects one’s muscles (pain/stiffness). He’s not one to take pills either.
What makes it difficult for me is that I will never truly know how my body would have aged without the PMR, but I am comforted by the fact that I am in some ways healthier now at this weight, off of blood pressure medication, and more active overall than at the time of diagnosis.
Thank you for your post….probably food for thought for a lot of us on this forum.
Good to hear that you're feeling healthier and more energetic now. It's encouraging!I was reasonably fit (not very sporty, but not overweight, no BP, no other issues) before this all started. It's not easy to accept my new normal, but the support from everyone here is a big morale booster!
A view from another perspective
I can’t stand up straight or walk without holding on to something. I use a rollator. This is every day for the rest of my life. I am not waiting for it to go away, because it won’t. Nor am I living in the past. This is now me and I like me, I’m still me, I’m always me.
My mobility finally packed it in in about 2018; when I first arrived in Brighton I was up on the Downs on two sticks, though not going far. Five years before that I could walk 10 miles.
Health and fitness are different. Sure, I can no longer walk 10 miles. So long as CVS, kidneys, lungs, Gi tract and indeed muscles if not skeletal system are all behaving properly, I’m healthy; my problems are mechanical, not systemic - spinal curvature and one leg shorter than the other. I also have OA. It doesn’t trouble me and I want to keep it that way.
I am fortunate in that the only apparent impact PMR and Pred have on me is my energy levels. Post-PMR I expect to have more energy and do more of the same.
I don’t think anyone can tell you how you’ll be after because that depends on any lasting impairment of your body due to illness and/or medication.
However you are, your goal would be to be the best version of it and enjoy life, to live in the present, not six years ago.
hello Dochaz - I dip in and out of here but saw your post and it made me reflect-
I had PMR at 51 and lucky that it went by about 2 years. But in that time I’d lost strength and confidence. I had been fit swimming and walking etc. but after PMR I was too scared to go into the sea because I thought I wouldn’t be able to swim.
I’m now 56 and have almost the same fitness levels as before. I joined wild sea swimming women and now regularly go for a dip all year round. I’ve done lots of walks and even went up suliven with my daughter inspired by the film Edie with Sheila Hancock.
It took time. Slowly doing more. So slow I didn’t notice it happening until I suddenly realised how far I’d come when I was bodyboarding in the January sea! Walking more too. Not pushing it but testing my boundaries.
Also being with others increased my confidence. A sociable dog walk or e-bike ride (I did succumb to the e-bike)
I know everyone and each case is different with other conditions that can hamper progress. But I think doing a little and often but listening to you body (I certainly couldn’t have walked more than 500m at my worst PMR) and being with others can make it fun rather than a chore
My only downside is I put on weight that hasn’t shifted - probably would like to lose 2 stone - at least blubber keeps me warm in the sea 😅
Thank you for sharing your experience. It gives me hope! I haven't hit the 2 year mark yet, and the way things are going, it looks like it might take a bit longer, hence my doubts and lack of optimism... but some very positive stories out there which warm the cockles 😊
xxx take time. I didn’t think I’d ever get back to anywhere near my previous levels. PMR really knocked me physically and mentally. It’s a marathon (albeit a tortoise paced one ) but for me it took looking back to see how far I’d come x
I still have PMR after 6 years and I feel more energetic than before I had it.
I do a lot more walking than I did pre PMR! I will be 70 in just over a months time so hope I can keep it up
I’m pretty sure I’ll never go back to my pre-PMR/GCA fitness levels simply because my body is six years older since first symptoms and it has been somewhat ravaged. I don’t look on this as defeatist but a fact of life. I still have the determination at almost 80 years old to be as active as my body allows although I sometimes push the boundaries while keeping in mind I might have to rest more the following day. I have happy memories of the times when I played netball (B team for the older ladies) and swam further and at a faster pace than my much younger colleague (boasting?—of course I am). I had a successful, satisfying, tiring career. I played with my grandchildren and skipped and ran along with them and carried them when their tired little legs needed a break and consider myself fortunate to have experienced those times. Of course I have small pangs of sadness for things I can no longer do and maybe never do, but these are fleeting; I live in the present and appreciate the outdoors, the indoors and I love to laugh. I could look back with regret at things I haven’t achieved but what is the point? There is always something to look forward to however simple: starting a new book, meeting up with friends and family, a walk in the outdoors or a whole avocado to myself.
So, when you come out of this tunnel of course your life will go back to some kind of normal. It may be at a slower pace, it may be less ‘exciting’ but if you find joy in the small things you will be happy and fulfilled……fingers crossed 😁.
🫶
After four years I am coming to the end of my PMR journey. I am 71 now Over the last year I have built up my exercise level to almost what it was before. The disease has taken its toll which is inevitable but I feel very lucky to be able to do what I do. Listen to your body it will tell you if you are doing too much. There is light at the end of the tunnel. Stay strong ❤️
I was diagnosed in July 2020 so have had it 3 years now. I asked myself the same question about the effects of ageing anyway, versus the effects of PMR. I am still on 5 mg Pred and having had one flare, have decided to taper extremely slow, quality of life is more important than getting off pred. I was reasonably fit pre-PMR and still am. But I am *mindful* about the exercise I do. I swim regularly and will push myself if I am feeling good. If not, I will just do 20 lengths, happy that I am "keeping my hand in". This morning I have decided to go to a yoga class. I am conscious that I want to maintain bone strength, but not harm myself or wear myself out. Without PMR, exercise which pushes the limits is good for you and increases strength and cardio-vascular capacity. With PMR, this is still true but if you push too hard it will have a negative effect. I allow myself longer recovery time too. Good luck in your recovery!!
Thank you! I try to walk for about an hour or so every other day and go to Pilates twice a week. Also line-dancing once a week and the odd e-bike ride (but stiffness in shoulders is an issue). Some days are better than others, and my levels of energy and stamina have definitely taken a hit. Still, thanks to Pred, I can make a meal without having to sit down to rest between chopping each individual carrot! though now and again I have to give myself a lazy couch day until I get my strength back!Thanks for your good wishes 😘
Hi Marijo1951, I was diagnosed April 2021 with PMR but came out of it in 9 months. Worked hard on diet and exercise. I’m now 70 and workout 7 days at the club and walk and bike depending on weather.
Pacing yourself is good idea but also take time for yourself to relax. I’m still working on this one. I had lost 35 lbs and all my muscles were sagging from not being able to move but now back at it and feeling great. You will too!
interesting topic thank you. Note my diagnosis is Stills Disease which for me manifests as RD. I was diagnosed aged 17 in 1979 and medication free apart from pain relief by my mid 20s although I continue to use limb support. I’ve had two children and a career but have always paced my activity to ensure I can do the essentials. Now 61 life is slower but without exception since diagnosis I’ve felt invaded and overwhelmed by this condition. Sometimes I feel so drenched in fatigue and malaise that I may lie down and die. I haven’t yet, I plod on but do worry that aging combined with Stills could be hard. I have other mild AI things like lichen sclerosis and Interstitial Cystitis that contribute of course. I tell myself if I want to bake today I must rest tomorrow or iron this afternoon in stretches of 15 minutes at a time. It’s a bind but gets me through, I wonder if I’ll be saying this aged 71, 81, 91 and 101 😉. Wishing you better days.
Ageing without illness may not highlight not being able to do as much. Maybe we would have adjusted automatically, who knows? With things like pmr/gca, and no doubt many other conditions, your mind is sharply focussed (well, you know what I mean) on how we are feeling, can I do this, do I need a rest etc. It's almost as though ageing as well is a shock.
Maybe the condition makes us more aware of the need to live as healthily as we can, within our own limitations. It's a bit like how long is a piece of string and trying to measure against another piece of string of indeterminate length. Either way, we are ageing and how we feel is a moveable feast. Looking back is not necessarily the best way forward.
Oh dear, that was a bit philosophical. Apologies!
No worries! You are right. No point dwelling on what might have been without this. The only way out is through 😉
I attend classes at the gym most days usually with the phrase clinical or med in their titles. My Well-being circuits has 3 levels chair exercise, standing (including chair support), circuit equipment around the room. Last week I spent the class sat or standing with chair support. Today I did the whole class using the equipment around the room. I think this sums up our condition. My advice would be don’t fight it work with it. If you pace yourself and are kind to yourself you will maintain your best level of fitness. We just need to embrace the fact this illness is not a life sentence. Good luck x
I suppose my worry is that in some way life will have passed me by during the years of illness and that there will always be a sense of missing some good years before embracing and accepting life as an older person. But, as many contributers have stressed, there are far more serious conditions out there and we need to look to the future. I have to admit, on a personal level, that I had difficulty adjusting to being called "Granny" rather than "Mum"! I actually didn't react at all when my daughter (mother of my one grandson) adressed me as Granny, but turned round when she said Mum. So maybe I have issues with aging in general 😕... More work needed!
I was supposed to have a 3 month trip to Australia when I retired, Covid hit and it had to be cancelled. This trip will never happen now as the ducks won’t ever be lined up again regarding staying with friends out there. My age at 68 is catching up with me but I am determined to have a shorter holiday and do South America it’s at the top of my list x
I started this at 71 just after finishing a triathlon (how do you know someone is a triathlete?.. Dont worry.. they will TELL you. haha) anyway I was very fit. Now I am 76 and just had a flare when I got to .5mg... and am back up to 2mg. alas.. BUT I have maintained my fitness. I teach Yoga and continued to the entire time. GRANTED, it is pretty easy yoga. (if you search Relaxation a link should come up but if not I am happy to post it. Some tracks...for yoga and relaxation I made. Bottom line is you will be older... PMR or not.. but you can still be as strong and fit as you can be! Try not to worry about it. Just enjoy everyday as best you can and YOU will be like that 93 year old woman in your pilates group. !
Easy yoga sounds good to me! Do you do online courses? Not sure I really want to live to 93, though 😏
I have a Sat morning zoom class. (I am in the US so if you are in UK there is the 6 hour time difference!) You are welcome to come first class is free. you can DM me for that link but here is a link to the yoga and relaxation audio. sites.google.com/a/apps.hop...
Hi Dochaz,
I would like to say that it is possible to recover fitness after PMR. I only had PMR for 2 years as it was diagnosed early. But now, 4 months after stopping my prednisolone I am now exercising increasingly. I am back to swimming a kilometer 2 or 3 times a week and walking 3-5 miles also 2-3 times a week. I have to say that initially I felt exhausted as I was building up distances and still sometimes feel quite fatigued but my mood is upbeat that it can get better. My advice is to build up slowly and I feel now that I can be as strong as I was before PMR.
Good luck
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