Just found this - and since Long Covid is almost certainly an autoimmune condition, for some people probably reactive and will go away, I do wonder how many have asked people who already live with an a/i disorder how they manage???
For some people exercise does help - but too much is a major problem for a lot of others. There is no right or wrong - but just because YOU can manage a long long walk, or a bike ride or still achieve a competitive standard by no means everyone can. You might think it is being positive rather than depressing, but for some people the being unable to do what they did before hurts and when someone alleges that exercise is the way to deal with PMR, do remember to temper it with "I find this helps me though I know some probably can't ..."
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Saw a programme a few months ago showing how many severely affected covid patients had slowly recovered due to pacing....one lady struggled to breathe and walk, but a few months on, made a remarkable recovery......like she said in the article about ME and CFS, for years they hadn't been believed, and still aren't......It will be a very famous and rich person that can solve fatigue!...
Hahahahahaha - "more than 2 hours of intense exercise a day is probably not a good idea for most". And THAT was about healthy subjects I presume. Ironic given the reason I wrote the post in the first place
Wow...noted and interesting. Given what I could do pre and now post I reckon that my 6-8hr cycling days are numbered. When the inflammation is suppressed I'll try and see what's possible but I'm aware of the issues now. I'm going to try and regain something but I now know I need to reset my previous "just go and do it" approach. It will be much more measured and reactive.
Okay, I've just read quickly through this article and think to myself, that is far too many things to remember. How can I know if I'm getting enough of this or that, or too much of the other thing, in my (generally healthy but maybe too small in quantity) diet? It seems too onerous to even think about studying my food enough to know what I apparently need to know. And how does one explain how I was so very well for the first few months or even most of the first year on pred and able to do without difficulty everything again, and always always always living as healthily as I knew how, but since then it's been a usually slow but definite downhill slide, although I continue to try hard to maintain what's left of my level of fitness. And before you tell me I must be doing too much, what used to be standard daily aiming for 10,000 steps has dwindled to relief when I manage 3,000 and even happiness if almost by accident I get up to 6,000 (very rarely now). I'm no longer capable of "doing too much"!
I was already 68 when I started pred, so not a spring chicken then, and never athletic. I still think I should have been able to maintain a much higher level of fitness. Part of the problem right now is the loss of activity when I was nursing my injured knees for most of a year, but I don't seem able to get better, plateaued really quickly after I became able to get out and about without leaning on walking poles again. It's been several months, I expected more but I have been very careful not to push too hard owing to setting myself back repeatedly in early stages of knee recovery. Now it's not the knees, it's everything else. I almost feel like death is beginning to stalk me.
Heron, I am feeling the same way, I am on a downhill slide. 2 or 3 years ago I actually felt like I was getting better, now I feel like I have “Long GCA”. Do you suppose it was this pandemic year that set us back?
It certainly hasn't helped. Initially I blamed lower activity level which led to my twisting my knee, now I'm more inclined to think it was the fact my sneakers needed to be replaced. Either way, first lockdown could be blamed. I have to acknowledge, however, that it's increased age which makes it much harder for the body to recover. A year ago at this time I'd gone down to zero. But I felt I had to restart, I think I waited a month and pain just got worse and worse. And to be honest and I hate to say this because pred is really all we have, I don't think months on higher (for me) pred have helped over all health and stamina.
Lots of sympathy for you. I was 90 when first diagnosed, but I think I had it for at least a year by then. I do consider myself fortunate than I was in late 80s before anything started to go wrong with me. Last year when cardiologist suggested I have the TAVR process on my aortic valve my response was, "I've already had good long life." However he said it is not for longevity but for quality of life left so I had it.
Interesting, I have long known I can't do any sudden strenous exercise like run to catch a bus or walk uphill as it makes be feel very ill suddenly, yet heart, pulse etc are all normal.
I totally agree having joined the “ I can’t do that anymore” gang and it makes me sad sometimes. With PMR alone I was able to do ( at my best) 30,000 daily steps. GCA/LVV has floored me - literally.
I am still struggling to walk just round my garden after 10 years with what was PMR, ( no inflammation now)..I want answers when he rings me with cortisol results!......had enough now...that`s my rant for the day....
I was helped by a grizzly baby grandson who loved being pushed all around the neighbourhood by a granny singing childhood hymns to him. Eventually he would hum to himself and nod off and by then we were far from home. Happy days!
I believe the most I ever measured was something like 17,000. Usually it would be over 10,000 as in the beginning I'd only measure the walk itself, aiming for 10,000. Now I clip on a step counter early in the day and measure all my activity, so the decline is actually much worse than seems on the surface. How did you find time to do 30,000, or were you a runner?
As above and yes every step counted on my baby minding days. This was my top score though and the pram gave the illusion of support. The streets are tree lined and pretty where I live there are two parks and a large Victorian Cemetery. We learned every inch. Time didn’t seem to be an issue. Now I’m lucky if I wobble round one block then go in for a nap.
You pushed him around Cemetery Park? And sang at the same time? WOWZER!! SJ that is some feat....I've walked that walk with my beagles, that's some hill to push anyone up no matter how small!!
There is a careful route that avoids any serious hills. If we are talking the same Cemetery, it is diagonally opposite my house. I think you definitely lose fitness over the years. Prednisalone had a spectacular effect on me initially and of course, I was in love with the contents of the pram who wasn’t very heavy. I couldn’t contemplate it now.
I think the official name is Sharrow Cemetery Park. The one with the big memorial and is it Porter Brook at the bottom of the hill? It's a beautiful park. However I'm in Withernsea now, at the southern end of the Yorkshire Wolds and considerably flatter than Sheffield. I found I was very breathless on exertion on the higher doses of pred. Even walking up to our then local park, Mount Pleasant I was gasping for breath. Then later on I could manage the almost 300ft climb from home to the reaching the top of Meersbrook Park relatively comfortable.... Sheffield is blessed with many beautiful parks isn't it.
I have often wondered this question. If I do any kind of exercise, like a long walk or a day out or journey, I don't feel it at the time but I pay the price with say 5 days of fatigue afterwards, during which time I am totally wiped out mentally and physically. A while ago I decided to experiment for a week. The only exercise I did was about 10 mins walking every other day, not every day. I felt loads better. Yet all doctors stress that regular exercise is vitally important. On the OMERACT meeting I noticed there was a physiotherapist doing a Phd on PMR and exercise, I hope she gets to the bottom of this conundrum. I'm willing to be a guinea pig and go and sit on a comfy chair with a nice view or a good book and do nothing for a couple of weeks.
I find something similar - alternate days walking is far better than daily. Yes - I'd like a peek at her thesis ... Come to that - Claire Owen's PhD in the basis of 35 PMR patients would be worth it too! But this acceptance that the patients know what they are on about is building nicely ...
Think the physios name was Anne O'Brien? I wonder why sometimes and under what circumstances doctors prescribe total bedrest, or was that just in the olden days?
Don't know - but a bit pointless. Even without pred I only managed because of fairly specific exercise. Couldn't do stairs - if I left them out of the equation I could do lots of other things. That's one aspect of pacing I think - finding what helps and what definitely doesn't.
Having led a really active life, how, at the age of 77, does one learn this "pacing". On Sunday I did some work in the garden, worked for probably fifteen minutes, came inside and rested for a short while. Went out and did another short bit of work, and then rested. I felt absolutely fine, so carried on like that all day. Yesterday I was floored, but HAD to drive 21 miles to the dentist, and then on to do some shopping. Yesterday evening I could barely function. Today I don't feel much better, either. My doctor also advised exercising and increasing a bit every day. Hah!! Walking up a very gentle slope had me in tears the other day. Most embarrassing. (An aside: while driving I was following a Jaguar with the number plate "... PMR". I wanted to steal it!!)
Never too old to learn - and discipline. A bit more every day is too often: find a level you can manage, and do that for a few weeks with alternate days as rest days - that is a crucial point because it is needed for recovery. Then you can add a bit - but only a few minutes at most. Same procedure again.
It may take time and may require a thorough "counselling" session with someone. I learned it the hard way - I knew that 3 short ski runs was my limit at that particular stage of the season but I did the "one last run" only to hit the wall of overwhelming fatigue about 3/4 of the way down a very easy run. The entire run usually took me under 10 minutes - the last few hundred yards took half an hour with most of it being sitting wondering how to get to the lift. It would have been embarrassing to get the rescue services!
Just the number plate - or the Jaguar!When you garden again - just remember what happened this time...and may half a day, or longer breaks in between!
Maybe have a rest day as well...2 busy days on the trot not good. Not always possible, I know...but forward planning is a must with our illnesses... spontaneity --what's that 🤦♀️?
The extra requirement by the muscles for oxygen when exerted I imagine. It's a shame they haven't done research on the mitochondria in PMR but patients tend not to go a bundle on a muscle biopsy being taken from the thigh ...
At my behest! There is a guy in Leeds with a device that does mitochondrial measurements - comes from the company OH worked for as a consultant after he retired here. I have no idea if they found anything useful though
As a formerly overactive person, I’m vulnerable to situations that arise where formerly I would have charged in and organised up a storm. Lately I’ve learned to step back but when I get caught up in the moment, I feel like an ex racehorse who saw the jumps and went for it, galloped the course then collapsed. I’ve just spent five days virtually in bed after a birthday dancing lesson (a gift) that went on for 1.5 hours instead of half an hour. Enjoyed it but the cost was high. So whenever I want to have a day out I must plan for the inevitable price. I take double pred the day before and on the day of the outing.
Same here, I know a day trip out, the kind of things other people of my age can just take in their stride will wipe me out for about 4 or 5 days after, and I sometimes have to increase the Pred for a few days to deal with the increased inflammation and fatigue. Going on holday can take a few weeks to recover afterwards. It really limits my life and I often have to turn down invitations, whihc I don't think friends and family really understand because 'I look so well' because I am delighted to see them and be doing something. But I have to strike a balance and 'pay the price after' as I can't sit at home all the time watching life pass me by, that just makes me depressed.
That’s exactly what I feel! We have to Live and experience joy... and although we know a price must be paid, it’s worth it just to join the big world! I found Glastonbury so uplifting, the people so kind and the spiritual places were the peace and rest I needed. I decided to go to bed as soon as I’d drunk a cup of tea and I slept the clock round from 4pm till 5am with a short break at 11pm for a snack. I’m glad I went!!
The key is not to do the same exercise every day. Involving different muscle groups and alternating so that the same muscles are used every 3rd day is the proper way to exercise. If for example one wants to do strength exercise, do upper body first day, core second day and lower body 3rd day. Then you can repeat the cycle.
yes, rotation provides you with 2 day rest for each group of muscles, so although you are active every day, you would be using different group of muscles.
The only activity that can be done every day without pain ( and is also good for PMR) is dynamic stretching with focus on shoulders and hip/groin area IMO.
Sometimes I go back and read about some of the so-called remedies and snake-oil through the years during the expansion into the west to the present and ask myself what scientific method did they follow to draw the conclusions they came up with.
Sometimes I think common sense just gets thrown out the window and doctors just “ wing-it”. Let’s see. The root cause of PMR is not known (as far as I know) but we know the autoimmune response results in extreme chronic muscular inflammation that left unchecked can result in muscle damage. We’ll prescribe medication that will reduce the inflammation and/or inhibit some of the autoimmune aspect to reduce or eliminate inflammation and hope the disease eventually goes into remission while we continue to research and try to determine the cause(s).
I think from a broad overview that about sums it up. Now, while we are doing this go out and do strenuous exercise! Really? It’s been awhile since I was an exercise nut, but one thing I do remember was that other than maybe walking I needed to follow exercise with periods of rest. In other words I’d exercise one day address a set of muscle groups, the next day I do a different set and then skip a day or two (depending on how I felt -I know sounds subjective, but it’s not really. After you get into it awhile you can tell if you went a little too aggressive). We know that exercise causes a release of a protein that can reduce inflammation, and too much can cause inflammation and muscles need time to heal before stressing them again, else can lead to chronic inflammation. Doing a marathon or similar without many months of conditioning puts people at a high risk of chronic inflammation.
Everyone is different and while a carefully managed (read physical therapist) exercise program can be very beneficial going out there and just doing unmanaged strenuous exercise is just…sorry, dumb.
I’m amazed our rheumys don’t prescribe physical therapy and a nutritionist to aid in our recovery and instead just leave us to our devices. Between these two I believe a balanced and managed program would be very beneficial. But doing on your own without the prescription would be very costly without medical insurance picking up at least part of the expense. At least we can avoid or reduce consumption of foods that can contribute to risk of increased inflammation. Avoiding refined sugar and weight management under a professional’s guidance (I don’t mean WW or similar) can definitely help.
My 2 cents for today which adjusted for inflation doesn’t mean much!😂
At least Dr Mackie is looking into what exercise is best, but I hope they actually listen to people with PMR not just prescibe something from physiotherapy text books they think will work.
My husband, a fit fella, was sure exercise and stretching was the answer in the early days before I was diagnosed with PMR. Turns out, for me at that time, it was the worst thing. He felt bad afterward and learned that I need to take the lead in my choices around physical activity. He also said it would be a nightmare for him to get PMR and have limited physical activity. Alas, now he is dealing with shoulder issues and that alone has impacted his mobility and mindset, so he is growing more empathy by the day.
I’ve been lucky to be able to slowly work up to an activity regime that works for me…exercises in the pool being most helpful. The activity also helps with sleep and aids with my ongoing struggle with a love of food, especially since I started taking pred 3 years ago.
I also know many others who have little or no physical activity due to chronic pain, ai conditions or mental health challenges, and I feel for them all and remember my 5 months of hell pre-diagnosis. Our physicality is certainly connected to our emotions and mental health. They are mourning the life they used to live, and this grief and loss is real!
Sadly there seems to be a great deal of us. Someone said to me not long ago....just wake up tomorrow and say to yourself it's all gone away!.....I had to walk away...or else...😱
I'm still struggling with the fact I can no longer run. My current life bears no resemblance to my pre PMR life if I'm honest and it's difficult...
I really think everyone should be active as they can because it's a good thing but as you say PMRPRO, the level you can manage without consequences is a very personal thing. That was evident in the physio focus group many months ago where it was clear that everyone is at a different place. There's not even a consensus that everyone finds heat more helpful than cold although the cold are in the minority.
That's why this forum is so good. All of these ideas and experiences are discussed and since managing this condition seems to be 'suck it and see' to an extent that's helpful. There are obviously a few absolutes - take the pred, eat well, stay hydrated etc.
I was talking to a colleague last month who was saying how long covid was really affecting his family. He was saying there was little support and how were they to manage and get help. I was of course very sympathetic but I couldn't help but say that that set of symptoms is what I have lived with while working for the last 18 months. It's opened his eyes for sure.
I keep telling my friends that you don't want covid, you might feel like it won't kill you but by heck you don't want long covid because living with this stuff is tricky.
I can relate to the struggle of coming to terms with my prePMR very active lifestyle. At age 62, I exercised 5 days a week, alternating cardio days with strength training; I even won a 5k for my age division; now at 64, but with PMR, I can barely walk for 30 minutes without exhaustion—no jogging whatsoever! Even trying to jog at a slow pace makes my feet tingle and my neck stiffen. Weird, I know! I’ve been on prednisone for 8 months, when I was officially diagnosed. I suffered for 8 months or so before diagnosed. It’s depressing for sure, but I pray a lot, rest a lot , exercise as much as I can comfortably, and try to give myself grace, hoping this condition will eventually improve!
I've read a few articles on long Covid and the symptoms are almost identical to PMR - my rheumatologist concurs. Hopefully a good thing to come out of this pandemic is that more research will be done. Up until now PMR etc has been treated as a minor illness that mainly affects elderly women so not taken seriously. I was unable to work for years but kept being turned down for sickness benefits and told I was fit for work. I eventually got them but only once I was also registered blind, not for my incapacity to do things. But now it is affecting younger people the medical profession/NHS is starting to take fatigue etc more seriously
Hope you're doing ok at the moment TC, missed the last catch up.
I do think you're right, it will be a positive if more research is done into fatigue and related issues. I cannot believe the hoops you've had to jump through given the issues are apparent .
Thanks C, that's sweet of you. Yorkshire group is taking a break for summer I think as people are out and about more and will resume by Zoom and maybe even live in Sept.
The disability benefit system in England is not fit for purpose, the Government treat all sick/disabled people as work-shy malingerers trying to pull a fast-one. My benefits went up by 25p a week recently, yes that's a whole £1 a month or £12 a year. I'm going to spend spend spend. It's not a charity hand-out I should be grateful for but a system I paid into for 40 years. I know it's so difficult for all of you who have to somehow work despite struggling with PMR, and now we all have to work longer before getting pensions (68 for me). I would love to work and really miss it, but just couldn't do it. I reckon PMR has cost me about £250,000 in lost earnings so far
Like you say, we have a welfare system in the UK that we pay into in case we ever need it, or someone else does. It's a crying shame it leaves good people who just happen to be unwell falling short - it's also another hoop to jump through when you're not up to it.
There are work shy malingerers in every walk of life, I'd say there are a fair few at work. It's almost easier to get paid much more while sailing under the radar rather than make an application for paltry sickness benefit.
Ha ha you're right there, I've known people on full pay for years because they work for t'Council or the NHS or ironically the DWP (one rule for them and another for claimants) or a big corporation, some genuine but some probably playing the system. My main point is that if you have have been diagnosed with a disease such as PMR or being blind or in the case of one of my relatives, dementia, that should automatically qualify you for benefits without having to 'prove' how hard daily life is. Hopefully the benefit system will recognise people with long Covid need help and can't work or get sick pay
Highly unlikely to be on full pay for years - unless things have changed since I worked in the public sector. Six months max on full pay, then 6 months on half pay, then medical retirement if unable to return to work.
Agree, I'm not going to criticise public sector - the Goverment tried to blame all our woes on public sector workers and demonise and pit them against private sector workers when they imposed austerity in 2010. Nor is this the place to get into political discussions so this is the last I'll say.
I will just say that my 2 NHS worker daughters both with degrees, earned less together than their cousin working in marketing for Diageo on her own ...
And that was my point when it came up over the weekend and why I wrote this post - YOU may be able to do almost what you did before, but your neighbour possibly can't and is breaking their heart over it. DON'T make it sound as if they aren't trying hard enough ...
As with all things PMR/GCA please don’t be disheartened if you read other members posts who seem to be cruising through their illness with exercise programmes that seem unobtainable to you. Be inspired perhaps, but everyone is different, we all had a different start points, whether that be age, fitness, or any other circumstance.
Just remember, you shouldn't EVER measure yourself against others, just YOUR personal standards.
This is very timely for me. I have on the whole been starting to feel better, now at 4mg after two and a half years. I have started to think of myself as being more normal, not so much of an invalid. Then twice in the last couple of weeks I have been involved in things that meant I missed my afternoon nap. Each time I have had a real slump for a number of days, making me feel quite dejected, and thinking Why? Why? Well, I think you have the answers here. Even a four and a half mg, I still need to live a very quiet life. And that doesn't mean just being very gentle with exercise, but being aware that even demanding social interactions, like a phone chat with a recently bereaved friend, can add up to overload and a reaction in the body.
That could be partly due to adrenals not up to speed yet... once you get below around 7.5mg of Pred (equivalent to physiological dose) they need to add in enough cortisol to reach that level. if you have read this - might explain -healthunlocked.com/pmrgcauk...
I’m so pleased to read this post , on Sunday had lunch with bubble daughter and other daughter, son-in-law , granddaughter and two great grandchildren turned up , spent Monday absolutely wiped it and couldn’t account for it but feel this is the reason, to many people at once x
That must have been a really active day out (read noisy if you won't get offended ) and no wonder you were tired! Even I find noise in the sense of a few visitors hard going - especially when they come to stay.
I've become a misophone over the last year and certain sounds get right inside my head such as people talking loudly in otherwise quiet surroundings, high-pitched dog barking, cackling laughter, children yelling - goodness, I've turned into a right misery guts.
I think successive lockdowns have had an insidious and hugely damaging disruptive effect on our physical and mental coping strategies, not to mention PMR itself which, just as many people here have said, seems to have become more rather than less active. I was much more able to do, think, create, act, decide, enjoy life 2 years ago.
I still think I'm 25 sometimes which led me to 'forget' my muscle strength is not what it was - I was on a walk through woods with a little stream and decided to take off shoes and throw them onto the other side - so I had to get over somehow - slid down the bank into much deeper water than I'd thought, paddled happily across, and spent 10 minutes dithering around trying to climb out via tree roots, clutching at saplings, looking for people but not wanting/but also wanting a hand out... a very inelegant 'beached whale' flop eventually onto the Other Side. Time for lunch! Luckily I still have the ability to laugh🤣
Noise like that also REALLY gets me - especially children whinging/squalling. I have even left the checkout queue if it appeared it would last long. But it predated Covid restrictions - which have been quite a relief for me when at the supermarket. However - I HATE muzak, especially combined with ads, which we get in 3 different languages including English, and it is always just a bit too loud and insistent! Luckily the butcher and baker here don't have it ...
Our superb fish counter is in the Spar supermarket. No escape ... But I also eat a lot of fish ;)What I don't understand is that they claim it makes the shopping experience better and people buy more. It makes me aim to get round faster and get out - so no dawdling round and spontaneous purchasing!
here's another one: standing contentedly alone gazing at a view/sea/whatever, and someone comes and stands right behind you in an otherwise empty landscape and says loudly 'you've found a nice peaceful place' .. 😲
My favourite lunch spot by the reservoir watching great-crested grebes
Or arriving at an otherwise empty campsite, choosing a pitch and sitting comfortably with the TV going only for the next punter to arrive and select the adjacent pitch and block the satellite signal. It happens all the time! And they always have a dog ...
Your input and article very timely for me too. I’d been building back up on exercise after feeling quite fatigued for a while. Swimming going nicely, feeling better, so decided to walk 9 holes of golf - a game I love. A hilly course and after about 3 holes my legs went to complete jelly, I just couldn’t manage it at all. I had to hold on for dear life to my trolley and get back to the start as soon as I could. I then had to rest up for a day or so. Pacing is definitely the key and not pushing too hard. No pain no gain is NOT a PMR mantra. Others just don’t seem to understand that. Everyone is different and also at different stages with this condition. I should have learnt that by now. 🥴. I personally find some form of exercise, however limited, good for my overall well-being and mobility but taking rest breaks, days off, pacing are definitely the way to go for me.
I was very fit and walked at least 7-10 miles a day before PMR. Now I can comfortably manage 3 or 4 depending on how I feel. Never push it any more because I pay for it in weeks
What exercise works for me one day , does not work for me another day . It is very inconsistent . I used to walk the length of the beach and back which took me half an hour . Then somedays I can walk 10mins and been sooo exhausted I don’t know how I will get back . Don’ t feel any different before I set off.
I always wondered whether over exercising had something to do with my diagnosis of GCA and PMR. I had just got a new Peloton spinning bike and I was doing daily intensive rides when my headaches and body aches began. I no longer take pred, just weekly Actemra injections. I’m back to cycling but at a much lower intensity level, I’m very wary about causing inflammation.
There has been a suggestion that excessive physical exertion can trigger PMR but I don't know if there is any proper evidence. It can certainly trigger a flare.
I love it. So true. On the flip side, I believe we do ourselves a grave injustice if we allow ourselves to feel like we failed if we can't, (or in other words unable) perform what others can. Thank you for posting this.
I still have the article written by the exercise guy who knew about PMR........and had devised a series especially for PMR people. Even I managed a bit of it, even whilst I was in the ♿️
I sometimes wish I had never closed our website down.........C'est la Vie.
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