Is it possible to continue living normally with PMR as before? Work, light sports training? My rheumy says I can continue to work 80% as a clerk and ride my bike. Thank you for your experience 🌷
Working: Is it possible to continue living normally... - PMRGCAuk
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Swizzly
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I found I was a lot more tired. I am able to work from home so can be reasonably flexible and give in if I need to. As they say PMR is life changing.
DorsetLadyPMRGCAuk volunteer
A new normal… not as previously -see this - and take notice of the links referring to learning to pacing yourself and fatigue which aer the things most people struggle with -
PMRproAmbassador
As long as you don't overdo it. I continued to ski 3 or 4 times a week but not for as long, stopping much earlier than I would have before and started off very very gently at the start of the season. I worked as before - but I was a freelance translator. working from home and so no commuting or heavy lifting. Just sometimes long hours but I could set my own hours and theoretically say no - except you dare not in case the client doesn't come back!
I worked part time and only did 18 hours a week, but I was close to retirement age and did actually carry on until I was nearly 70. I walked more than I have ever done and I haven’t really let PMR stop me from doing a lot of things. It depends a lot o; how you feel.
I still do Parkrun
I do too, it's been so good for me physically and mentally I would have been a very different place without my weekly parkrun fix
Don't want to be a dampener..but it is very individual...it is a spectrum and you don't know where you will be on that spectrum ...but having a gentle approach seems to help everyone...
I find I have been physically diminished but have been able to work more than half time (online). Haven't missed more than a few days work since PMR began almost 5 years ago!
I think it’s all about pacing yourself I’m new to PMR I’m into my 2nd month now. I’m 60 and a carer for my husband but love wood turning. My crafts are my escape from home life but I’m finding if I do too much my shoulders really ache next day. I’m on 20 mg pred so think it is the workload that causes the pain.
It’s hard to slow down when you’re feeling ok but by 3pm I start flagging and sometimes need a nap. I’m lucky I work for myself so can plan my day to my condition. Hope you are able to continue doing what you love.
I am 62 and my problems started 2 months ago. Now on 20 mg pred like you.
Would love to go the way with you and exchange ideas 😊
Yes happy to share ideas, keep me posted. I’m off to Cyprus next week for 2 weeks so I’m hoping the rest & sunshine will be beneficial.🌞
Enjoy Cyprus, sun, sea 🏖️ looking forward to reading from you 😊
Caroline
Thank you 🏖️ Tina
I am 77, have had PMR for three and a half years, and have continued to do a cardiac exercise class on zoom, twice a week, during this time. It involves weights and resistance bands, squats, lunges, press-ups against the wall, etc. I believe it has helped me to cope with PMR and remain more active than if I had not done it. When I had a flare, I stopped using the 2kg weights, but as the pain receded, I was able to use them again and build up my strength. Because of the weight-bearing exercise, I think it is strengthening my bones and helping to prevent osteoporosis.
you have my respect 👍🏻
I have had PMR for 8 years and counting. I still lead the life I led before. Walking at least 2 miles a day, weekly Pilates and yoga, skiing every winter. Luckily no real side effects from the pred. which helps. The only thing I do notice and it’s very minor, when I get muscle strain/stiffnessit takes longer than before for it to clear up. I hope there are many more people out there as lucky as me - don’t forget it’s the people experiencing problems and needing advice that are more likely to post here. Good luck, and I hope your new normal can be similar to your old normal🙂
It seems that there are many different experiences with PMR because we are all different and don’t fit into the mould the GPs and rheumies want us to fit.
This is just my experience: My GP suggested it would take two years and initially gave me the textbook tapering regime. I took it much more slowly and after three years I am off pred and back to normal. I was able to lead my life as normal very soon after starting on 15mg. I have always been active and apart from finding that my muscles ache more after exercise (maybe being three years older contributes) I’m walking an average of 3km a day, gardening, cycling, granny duty etc. Listen to your own body and pace yourself. Don’t rush the tapering process and fingers crossed you’ll se the light at the end of the tunnel.
Thank you for the experience 🌷
May i ask you how you tapered?
I started with 20 mg Pred on 23. April.
I used DL’s suggested method (there are links on this site) but then, being a mathematician, started to work on a 10% reduction plan of my own. I started on 15mg and went down from there to 12.5 on my GP’s instructions; then I found this forum. From 12.5 I went to 11, then to 10, 9, 8, 7 using combinations of 5mgs and 1mgs. After 7 I decided that 6.5 was closer to 10% than 6, so I chopped 1mg in half. 6 was next, then down in halves to 3. I tapered every 5 weeks, using week 5 to alternate between new and old dose. After 3 I slowed down and alternated for a couple of weeks, so it was probably every six or seven weeks that I reduced. I also reduced the drop from 0.5 to o.25, mainly doing eg 2.5/2 on alternate days to make it e.g. 2.25 average. If you don’t like maths I’ve probably fried your brain by now and actually DL’s excellent plan is the thing to use. 😃. The way to think of it is less a straight slope down to zero but more an ever more levelling off curve. I finished with 0.25 every other day, then every three, four, … until I took the plunge and stopped.
Sorry for the long reply - we ex-maths teachers tend to get absorbed in our explanations and lose the class half way!🤣
Wow thank you very much.
I will write a list with your method and also see DL’s tapering.
Here -
healthunlocked.com/pmrgcauk...
and also one from PMRpro -
healthunlocked.com/pmrgcauk...
They are set out slightly differently, but the aim's the same - choose whichever suits you best..
Good luck. There are lots of people on here with much more experience than me so you’ll have plenty of help along the way.
I wish. As has been said already, it is very individual, and you might find that you go up and down a lot over a period of time. I know I do. I am 65 and retired at 62. I had to stop work because I felt so ill and did not get a diagnosis for another 18 months. Up until a couple of months ago, I was swimming a kilometre on most days, but haven't been able to manage it since January and I also find walking painful and exhausting. Mind you, I think the taper that I was on is mostly responsible for how I am feeling atm.
I believe that I have had undiagnosed PMR since mid forties, which followed a pattern of flaring and remitting. Difficulty with walking has been the one constant throughout, when the PMR symptoms flare, as my worst problems are with the hip girdle. However, I managed to keep on top of the pain and stiffness by keeping fit until the pandemic hit and then they closed the gyms and the pools. I have never been able to get back any real sense of wellness since then (and believe me, I really have tried) and even over the last year on pred, my overall fitness, strength and overall wellbeing have deteriorated significantly. If I am honest, I am feeling pretty defeated by it atm.
Anyway, I don't mean to depress you. If there is a message amongst that, one is that despite your best efforts, there could be times when your body and this illness has other ideas and you must not blame yourself for that. The second is that you really need to make your health your priority and look after yourself very carefully. Despite the last few months, I still believe that looking after your physical fitness and exercising regularly within your capabilities is a key component to managing this awful illness. The illness means that you will need more rest than you did, you may not have as much stamina as you had before, and you may need more time to recover if you overdo it, plus a gap in your training may mean it takes longer to recover your fitness. So to answer your question, if you want to carry on living a fulfilling life, you need to be absolutely in tune with your body and what it needs and don't be afraid to draw boundaries around what other people, including health care professionals, consider that you should be able to achieve. The other key besides exercise is good nutrition. I wouldn't recommend any cranky diets, but eating for good health is really important. A lot of us with PMR follow low carb diets to manage the increased risk of diabetes from the pred and many of us use supplements to make up for those specific nutrients that people with PMR and on prednisolone can be deficient in. But overall, you will need to play it by ear and take good care of yourself. A wealth of experience, knowledge and wisdom in this group, so this is a good place to share and take advice.
Dear Gimme
Thank you for the informative line.
It is very sad that your PMR was discovered so late.
I work 8.5 hours 4 days a week and now have to see how that is workable.
I am grateful for this forum. There is nothing similar in Switzerland. The Swiss don't like to say they are ill. Always busy and fit...
I think I fell foul of the old adage that it couldn't be PMR, I was too young. And then when I was old enough, I was a menopausal woman, of course you have aches and pains. It took a newly qualified doctor to diagnose me after I burst into tears in front of the asthma nurse and she asked him to see me.
Oh poor you. I feel very lucky that mine was diagnosed within months of onset thanks to an osteopath and a friend’s GP son. I suggested to my GP that this was what it may be and she agreed and ordered the blood tests. I wonder what evidence there is comparing early diagnosis with outcome.
I worked 4 hour days, permanently remote, for a couple of years. It was just manageable.
As for exercise, I used to be quite active. I did, though, have to cut out the more strenuous stuff - skiing, backpacking, tennis ... These days, I limit myself to walking, biking (flat, short distances), kayaking.
Trying to combine work and exercise was really tough.
Today is my first day of retirement, though, so I'll let you know how it all plays out without the work variable out of the equation.
Sure you’ll find a great improvement - hope so, after all that’s the aim of the game.
Everyone's diseases is individual. Many of us tried to continue working, but had to give up. Many of us would love to go for a decent walk, but cannot. Excellent if you can manage to carry on, but if you can't, don't feel you have failed!
Special. Because my Rheumy said There's no reason not go to work 😳
I think they really don‘t know how PMR feels like…
I think they really don‘t know how PMR feels like…
Spot on.. and never likely to, at least not during their working life…
No reason not to go work? There's an eye roll moment! I came to the same conclusion that very few HCPs know what it feels like. I'm not a mean spirited person, so I really hope that they never do. I would call being too fatigued to barely last until lunch time without needing a nap, the brain fog that makes you forget what you are talking about mid sentence, not being able to get going until the morning dose of pred kicks in, finding sitting in a chair at a screen all day to be too painful and exhausting and muscles that get over tired by very little effort, are all excellent reasons why you might have difficulty holding down a job.
Depends on what the 'before' was like.
In my case, I haven't been able to be a in a full time job + full on Mum + homemaker + badminton twice a week as before. I think any Rheumie who gives you a blanket '80%' estimate without knowing what your daily life looked like is going on a generalisation.
Listen to your body. Short term - just have to take it as it comes, i keep my goals and work as flexible as I can. If I can't do something, i accept it. Career on the shelf for now. No point beating myself up. Plan and act for the mid to long term - diet and gentle exercises to build strength. I expect these to pay off later.
My life has continued much as before, once the prednisone kicked in, but I do tire more easily nowadays with heavier physical work. I used to be able to work for hours in the garden, but one hour at a time is about my limit now. Bending and kneeling are more problematic than they used to be, and any heavy lifting is a no-no. I can still go for long walks with no problem, though, and attend two-hour Tai chi classes with no issues.
I do need more sleep than I used to. I work from home on a semi-retired basis, and find myself sleeping all morning most days, and working in the afternoons. Then again, I am a night owl, so am often awake until 2 or 3 in the morning, which is one reason for the long lie-ins. If I overtire myself the day before, though, I can easily sleep 11 hours straight that night because I'm so exhausted.
I don't think I would be capable of working a 9-5 job anymore. It would be just too tiring.
I think the worst thing is the unreliability that develops - when suddenly something that you managed fine yesterday is not an option today. Or having to be somewhere by a specified time! Especially in the morning ...
Yes!!! I felt quite dismayed when I started my spring cleanup in the garden a few weeks ago, and felt so stiff and inflexible when trying to bend and kneel. It's as if I aged 10 years in the space of 1 year. I live alone on an acre of property and find myself wondering how much longer I'll be able to stay here.
There is a lady on the forum who also lives alone on a big rural property, has had PMR twice for a total of 8 years and has now been PMR-free for over 10 years. She had a hip replacement 10 years or so ago, still stacks her wood, makes her own bread by hand and a lot of other things. At something over 90! She first had PMR in 1999 at 67 she says in one reply.
Have a read of her replies
healthunlocked.com/user/Bet...
Wow!!! That's amazing! I love hearing about people like this -- very heartening!
She's an amazing lady!
Could have wrote this myself!
As has probably already been said, this is a very individual thing and the work, walk and do other "normal" activities in life is/can be very different for all of us. I think/know I've been very lucky, after the first two/three months (nearly four years in now), I've been able to lead, what in real terms, is a very normal life for me. (se bio for previous work/health problems). I still work part time for a Music Service and Chair the Board of another Music Hub and until I l lost my very, very special Border Collie walked around four/five/six miles a day, most of that before breakfast and on the hills of the South Pennines. Physically and mentally, I think the loss of Meg hit me harder than my PMR. Even with our other dog a Cockepoo/something type, I still walk over 10,000 steps a day and organise and run a big music festival and other events every year. I also have (so far) no side effects from Pred at all. I know I'm odd!!!!!!!!
Odd maybe, but nice with it… 😊
Thank you. 😊On 1.5mg at the moment, theoretically for another couple of weeks then tapering to 1.0mg again. End of the year maybe?!!!!! Certainly no rush at these levels.
Fingers crossed…. And no rush..😉
Interesting thread of conversation! What has happened for me is that initially after being diagnosed with PMR and having been very active, I fought it and continued on my merry way exercising, working, kayaking, lifting weights, running. As the years went on (9 years now with PMR and currently at 5 mg split dose of pred) my OA also got worse so I had to slow down the physical exercise. Also throw into the mix various hip and shoulder minor repairs and then two knee replacements. Result? This meant a gradual reduction of that high level of activity and also it meant I decided to retire from teaching 5 years ago as it was time! So it's a dance. At high levels of pred I could do much more than now, but also as we age and so do our bodies. I wish I could still jog but can't but yet I do still hike up mountains, or do Senior Zumba or walk 3 miles a day, or swim, or bike ride, and kayak in warm months. I think its important to tune in to your body and then determine what you can do. (I miss teaching elementary art a great deal but I don't miss the stress, smile).
I had to retire, medically, from teaching in 2001 due to my OA, still miss the students but not the stress and strain of senior management.
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