I was diagnosed with above at Christmas and am now on 20mg steroids a day and trying to get back to doing all the activities I usually enjoy like golf, aqua aerobics and walking.
I’m wondering how other people manage to keep themselves pain free and healthy
Hi and welcome!
I'm sorry to have to break this to you: if you try to continue as you were pre-PMR you will find your journey far harder and more painful than it need be, Being on 20mg pred is not the end of the story and, contrary to what many doctors seem to think, just because the pred takes away a lot of the pain and stiffness, you are by no means back to "normal" and certainly not cured.
You start on a higher dose than you are likely to end up on in order to clear out the accumulated inflammation in various body tissues which is what gives rise to the symptoms. Then you taper the dose slowly to find the lowest dose that manages the symptoms as well as the starting dose does. But you are not cured in any way - the pred just combats the inflammation, the actual disease process continues in the background, attacking the muscles and attachments around the joints and causing fluey symptoms and making muscles and tendons etc more delicate, If you had a long lasting flu - would you expect to get back to all your previous sporting activities while it was still making you feel ill? You get over most viruses in a few weeks, but PMR is a disorder that continues for months or often years. It is autoimmune and autoinflammatory in nature and that means your immune system is unable to recognise your body as self and attacks it, as it would attack a viral or bacterial infection, and makes you feel ill.
It isn't entirely clear what it is that causes the pain and fatigue in PMR but some of it is similar to the post-exertional malaise complained about by patients with ME/CFS or Long Covid. If you overdo activity you can actually make yourself worse. DOMS, delayed onset muscle soreness, can be far worse for a given amount of exercise than it was pre-PMR and also take far longer to resolve than you are used to. The pred is being something of a false friend - it relieves the pain and creates a sensation of well-being and energy that doesn't really exist. Part of managing PMR is learning to judge what your body is capable of doing now, pacing and resting as appropriate. You have a new normal now, you need to adjust your expectations.
DorsetLady will give you her welcome post - a description of what PMR is and with some links to help explain all about it and managing it. Do read them all - you will learn a lot about the nature of PMR.
Thanks for that insight
Hi and welcome,
Won’t repeat what PMRpro has said, but agree with what she said, and do please take it onboard…
As for keeping yourself pain free and healthy -firstly by being on correct dose for your PMR, moderated exercise and learning what your illness is all about. That includes your ‘new normality’. It’s not rocket science, but it takes a new mindset - certainly early days.
To that end, maybe have a look through this - and again as PMRpro said, take note of links therein -
Just to follow on from what Pro & DL have advised, I have now been living with PMR for almost 5yrs and I very quickly learnt the hard way, that for a while, I would have to adjust my lifestyle to accommodate my new health needs.
I had to accept that I would not be capable of maintaining the same level of activity I'd been used to whilst managing my PMR effectively.
In order to understand how I could best promote the optimum level of fitness, I learnt as much as I could about both the PMR and living whilst on steroids.
Knowledge is power and the more you understand your condition and the effects of steroids, the more you'll be able to minimise the symptoms & side effects.
Your life will most definitely need to change for a while, but it doesn't mean it'll stop.
You've made a good start here...this forum is informative, knowledgeable reliable and trustworthy and there'll always be a response to any concerns you may have.
Just to say that all the above is spot on. I felt enervated and back to better than normal and overdid it. That set me back. Please follow advise above. Finding YOUR new normal will be a difficult journey and you may need to factor in the weakening effect that pred. will induce. One of its side effects is to reduce your muscle mass and therefore weaken you. It can't be helped as it's the only drug which will reduce the inflammation. Good luck on your journey.
The mantra for PMR is rest, rest, rest.
You need to pace your activities to aid your recovery. You are experiencing a false dawn caused by a sophisticated pain killer.
so true, I am now experiencing that 6 days on 20mg - again - and starting to feel turbo charged, must go and sit down 😉
Prednisone predisposes tendons to injury and even rupture, so you will need to ratchet back the intensity of your exercise. The last thing you want is an Achilles problem. Also, PMR/Pred doesn't like repetitive motion very much, so you will also have to reduce the length of your workouts.
What you are currently experiencing is referred to as "steroid euphoria", which will begin to diffuse pretty soon, to be replaced by fatigue. We have to remember we are enduring a chronic condition, and must accommodate the necessity of plenty of rest if recovery is to be reached.
The good news is we get better when we take good care of ourselves.
The good news is we get better when we take good care of ourselves.
I used to believe that. Now 4 years in and on only one mg pred, the muscle myopathy induced by the pred has not improved at all...some of the sympotms of adrenal insufficiency have improved...but still periods in the day of deep fatigue.
This is a hell of a ride and "getting better" is not everyone's destiny.
There is hope. My muscles turned a corner about 2.5 years after stopping Pred and the low adrenal fatigue etc about 18 months after stopping. Along the way I was being periodically hammered by Covid too. I was sensitive to Pred and my muscles were very anffected and for me being fully off Pred was what was needed, though 1mg was oodles better than 3mg say.
Oh thank you for your reply. I am printing it and putting it on my fridge with the other encouraging words I have had from people on this forum.
I like that thought SnazzyD. I've thought that zero pred. was a must before recovering muscle and strength. Your post backs that up. I reckon nearly 60% myopathy in my case. Hell of a journey so far.
keep at it.
Welcome you have come to a great place for advice as you’ve already read. If you used to do lots of activity it will be hard on you. I put on a lot of weight in the first few years of PMR (I was diagnosed mid 2020) but lost all of it two/three years later as my pred dosage reduced. You do need to also watch blood sugar levels as the pred can cause type 2 diabetes. I wish I’d stuck to a better low carb diet at the start but of course carbs cheer me up which I needed 🙈
as others have said, you need to be a bit careful. I found swimming and easy walking very helpful for keeping fit. I have recently started a Pilates class which is very subtle but great for encouraging ease of movement. Don’t try to do too much, good luck.
over the most 4 years since diagnosis I have managed to stay relatively active. There have been interruptions with various injuries, but on the whole, I am able to do a good walk twice daily and go to the gym once (sometimes twice) a week where I jog on the running machine for 15-20 mins, spin for about 10-15 mins and do a low grade weight and abdominal routine. I’m hoping to get back to weekly Pilates soon. I was a very fit and active 50yr old prior to diagnosis so the change in pace took some getting used to. If I push too hard, my right knee lets me know! I have developed cervical spondylosis so I’m mindful of not overworking my neck but needing to strengthen it too. As everyone has mentioned here, it’s all about finding a balance and listening to your body. I kept road running in the early days of my diagnosis on higher levels of pred and it was fine initially, but fatigue crept in and I decided it was better to stick to less lengthy gym running for joint health. It’s important to keep moving though, as muscle wastage is very real (it’s hit me quite significantly) and emotional wellbeing is definitely linked to exercise - and that is what has hit me the hardest. Anxiety is now a very present part of my life - caused by PMR, steroids, menopause or a heady mix of the three! - who knows?! I was such a happy-go-lucky lass prior to diagnosis. So keeping active is essential for me to combat the dark clouds. Take it steady and good luck in finding your balance x
Lots of good advice above and congratulations for finding this forum so early in your journey. I wish I had found it a lot sooner. Lots of wise and knowledgeable folks here.
As has been remarked already, I've also had to dial back significantly over the last few years. I went undiagnosed for many years and therefore untreated, so it happened naturally as a result of fatigue and pain limiting any vigorous exercise. If I overdo it, it takes much longer to recover. Your body will let you know if you do overdo it, so listen to your body and let it tell you what you need when it comes to exercise and rest.
Before all this happened, I cycled, weight trained and hiked over the hills and enjoyed high altitude trekking for my holidays. My muscles won't let me do those things now and any attempts to improve my fitness has been limited by the fatigue. Nowadays, I've had to settle on swimming to try and keep my muscles and circulation moving, and I do love my swimming for both the physical and mental wellbeing aspects. After a year on pred, I still find walking any distance painful. Regular gentle stretching helps with the pain and stiffness and I think it key in maintaining my overall mobility. I've recently taken up yoga again, at an extremely basic level. I find it quite painful and I am stiff the next day, but overall, my mobility is slowly improving, so I am going to try and stick with it. Plus, I have recently started back with the weights. I use the resistance machines as I am far too wobbly for free weights. I keep the load very low and am using it more to exercise specific muscle groups in a safe and supported way, rather than attempting any strength building right now.
Apart from that, since starting pred, I have taken Vitamin D daily on the insistence of the first rheumatologist I spoke to. Plus, I take a supplement high in the nutrients involved in the energy pathways; folate, B6, B12, Vit C, iron etc, especially as I cannot eat the grains that contain gluten, which are normally an important source of B vitamins. I aim to eat foods that have a low glycaemic index and avoid foods with added sugar, to try to stabilise my blood sugar, since pred can put you at risk of Type II diabetes. I follow a loosely anti inflammatory diet, avoiding added sugar, limiting white starchy carbs and alcohol, also avoiding ultra processed foods, processed meats, the seed oils and limiting animal fats. I aim to include the foods considered to have benefits in inflammation, such as oily fish, olive oil, green leafy veg, walnuts etc.
This illness can be a complete bummer at times, but in spite of it, right from the start, I decided I should do what makes me happy. I can't do what I used to do, but I still do things that give me joy and I think that keeping myself in good mental shape is even more important than my physical limitations.
Thanks for sharing this
Start small and build up slowly. I was shocked how sore and how quickly I tired after only a short attempt at what I used to find so easy. I too love walking and used to walk everywhere. Distance and gradient no object. (Also the gym several times a week). Over the summer I managed to built up to 4 miles in one go. I was so happy because I could rejoin my walking group. I have yet to rejoin the other group that does 5-6 miles - maybe a step too far for me at the moment but I have hope.
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