New to PMR, around 3 months in, I feel much better for continual walking and stretching as the day goes on, I want to increase fitness levels through jogging and upper body muscle tone exercises, what is the consensus of experience/opinion about how this might affect my PMR symptoms?
I'm on 4 x 5mg prednisolone for the next few weeks.
Thank-you
Neil
Hi Neil, and welcome
Jogging may be okay - for some it would be a definite no, no - but it depends on how fit you were previously. But build up gently.
As for upper body muscle tone - you do need to be a bit more careful - your muscles are not as resilient as pre PMR/pre Pred, and take a lot longer to recover - and we don’t usually recommend too much in the repetitive exercise regime.
Have a look at the related posts on exercise, or type exercising or similar into search box.
There are some guys on here who are into their exercise, hopefully they will see this post and reply.
But you do have to remember you may feel good at the moment, and that’s because the 20mg Pred is keeping your inflammation very well controlled at the moment. As you reduce the medication it may not be quite so controlled - and most importantly you still have the underlying disease - the Pred is doing nothing for that - so you need to pace yourself.
Would be useful if you could add a bit more to your profile please -country - and tapering regime etc. Thanks- make answering easier at times.
Thank you for your guidance DL, I am reading up on the other exercise experiences just now as you suggest on this excellent forum, and I am very pleased to have joined you all.
Thanks once more DorsetLady, I have added profile info now and I look forward to many more experience sharing on this site.
Neil
There seems to be a great variation in tolerance. I would say, try it and see BUT work up slowly even if you had previously been very active. The reasons are that both Pred and PMR affect the muscle’s ability to be oxygenated and tolerate stress. Loss of muscle bulk also occurs to a greater or lesser extent depending on the person. Also, watch over straining ligaments and tendons with high impact repetitive exercise. Give a day or two after exercise to see if there is any delayed pain or stiffness. I suffered greatly from muscle wasting and ligament troubles, (though started on high dose) but some get back to high level activity. So perhaps just be cautious but not pessimistic.
Thanks for that SnazzyD, cautious and not pessimistic actually sums me up just now! I'm bursting to get back to my fairly extreme fitness regime, and I am in no mood to give in to this beast of an illness at 58 - but I am getting the picture to take tender steps forwards.
Neil
You don’t have to give in to it, but you do have to learn to accommodate it!
Trouble is with this illness there is no beating or fighting to be had that’s of any use because it’s our own body fighting itself. Keep it ticking over but no boot camp because it has let you down. If it feels beneficial do it, but avoid going to the level of getting the endorphin rush of a thrash. Be aware Pred can make one feel better than one is so be aware that one’s normal physical checks and balances may be absent. Saying all that the big success stories do seem to be blokes.
Neil,
I'm much older, but if you look at my other posts you will see that I'm an exercise junkie. Like you, my PMR appeared at a time when I'd increased the tempo for a major tournament - that said I doubt there was a correlation. I responded immediately to 15mg pred, and have been able to slowly bring it down to 2mg currently.
Mindful of the advice to back off on exercise, I decided to try to push ahead, fairly quickly coming back to only marginally less than pre PMR. I reasoned that if I struck a problem I could back off.
Nearly 2 years on my only issues have been several hamstring/adductor/quad strains. My jury is still out as to whether it has been pred related or simply that a nearly 80 year old is pushing his luck with the explosive nature of squash (or both).
My experience has been that, as long as I listened to my body and eased my way back in, I was able to get back to where I was pre PMR.
My next challenge will be to pick up the court fitness lost in the past 2 months since the Covid lockdown. Once we are back on court it'll take a good month or so to get back up to speed.
Before I developed pmr (last July) I did Pilates, yoga, swam and walked regularly. Now I do yoga (via zoom) and walk. Before lockdown I had one to one sessions with my yoga and Pilates instructor to see whether my body could cope. Difficultly I still have is accepting how much weaker my body is - my right leg and left arm in particular. Tried some weight lifting in the garden with my son recently and my left arm ached for days after so listen to your body and take it easy!
The answer is rather individual. If you were active before PMR, get back to the routine ASAP, but test water very slowly. It is good to get back to exercise as soon as you can to prevent/stop muscle loss. On the other side, because of the PMR/Prednisone you CANNOT go to intensive training, it will have he opposite effect that you want. High intensity training breaks muscle tissue and prednisone (because of the change in protein metabolism) will prevent muscle rebuilding resulting in muscle loss! The best way is to train at moderate level - some call it recovery level and focus on distance - LSD type training ( Long, Slow, Distance) :). As intended it helps replenish nutrients to the muscles and speeds up recovery. After several months, you may try higher intensity level for a few minutes at the time. Over time, with patients, one can reclaim same level of fitness as before PMR, but it took me almost a year.
Pace yourself with exercise - Pilates is good
Hi D, is there a Pilates App you or someone else could recommend?
Thanks
Neil
I usually go to a class but our tutor made us some videos - there are loads on You Tube - if you are a beginner I like - Michele Kerney - Australian - Core Stability Exercises
The basic question relates to how fit and used to exercise you were previously - and how long it took to get a diagnosis and start pred.
I exercised with PMR but no pred for 5 years - the only thing that kept me upright and mobile was a daily aquafit class in a warm pool and after that Pilates or Iyengha yoga that had been heavily adapted for me. If the water was cooler than 29C I couldn't stay in it for more than a few minutes, my muscles just seized up. When PMR started I was doing daily aerobic classes and step. An early sign was I couldn't get up onto the step - no "bounce". Over the following few months it got steadily worse until I simply couldn't do the classes I was used to. And then I went to try the crosstrainer to get ready for the ski season. One minute and the thigh claudication was crippling. I moved to a gym with a pool and did aquafit. At first I was finished after 20 mins at a low level. but over time I increased intensity and time. Then I moved here - no such classes available but I did continue skiing for a few years.
At the start of the season I did 3 very short runs on alternate days - and it took over a month to get to more runs. If I tried to do an extra one too soon, I found myself stuck half way down a slope in the SDOFD state (sit down or fall down) - it once took me 25 mins to do the final 200m of the run to the chairlift!
If you were fit and diagnosed and treated quickly you will be able to start at a higher level than someone who didn't exercise much and waited a long time for diagnosis. Muscle tone goes quickly. But you are unlikely to be able to start where you left off. My advice is to start VERY small - 10 mins moderate exercise and assess how you feel next day on a rest day. If that was OK, add 5 mins. Rest and assess. Repeat until you are slightly sore next day. At that point go back one step and work on intensity but again only step up a bit, not too much. It sounds slow - but the time mounts up far faster than you'd think.
The trick is to avoid DOMS, delayed onset muscle soreness. Once that has happened because you overdid it you may be in trouble. Training is causing small tears in muscle fibres - when they are healed the muscle is "trained" and stronger for the next activity. But if you develop severe DOMS it may take weeks to recover - because your muscles are delicate because of the autoimmune disorder. And that will set you back, possibly by weeks.
So like tapering - small steps and reassess. You will do far better like that.
Thanks for all of your replies and guidance, I appreciate each one and learning from all.
Cheers
Neil
Hi Neil
I'm a runner and was quite happy doing half marathons and clubs runs very regularly.
I'm managing to get back to running now, in no way anywhere near where I was but that's probably more to do with huge weight gain but it is possible. Did you run before PMR as that would give you some confidence and muscle memory in getting back to it. If you at new to running I would recommend the couch to 5k app and that way you will have a really good structure to follow and can repeat a week if necessary. I would probably say follow it even if you're a runner - we aren't good at slowing down are we.
I would exercise caution however, you MUST listen much more carefully to your body. Do not overdo it or you will risk a flare up.
I have also noticed my neck and shoulder muscles just don't work like they used to and cramp up very easily when running so I have to spend far more time on Pilates and stretching well. I've also found it helps to wear buffs round neck on chilly mornings and longer sleeves, I end up too hot with pred sweats but it's better than letting the shoulders get cold.
Its absolutely possible just go steady. Good luck.
Keep up the exercises, you will feel the better of it. When our gym was closed I bought a couple of 2.5K weights on Amazon and found an old exercise mat in the attic. Start with a 20 minute power walk, then 20 minutes with your weight then some core exercises on the mat; especially recommend Stuart McGill for core. You will feel better. Hamish, Edinburgh.
Hi Underpars
It was interesting to read your post. The best bit of advice is not to fight PMR but to work with the condition, it becomes part of you and there are so many positives that will come from your experience. Slowly, slowly is the way forward but at 20mg listen to your body, rest and let your body start to get healthy. When I was diagnosed in 2013 I was a 51yr old senior Fire Officer, very fit marathon runner (70+ miles per week) and high altitude mountaineer. I was signed-up to complete my 5th London marathon, 15th Great North Run, UK 3 Peaks Challenge and climb Ama Dablam (Himalayas) but by May 2013 I had lost 3st in muscle mass, in a wheelchair and bed patient. I was despondent but remained positive. Follow a structured steroid reduction programme, listen to your body, rest when your body wants to, enjoy the downtime, maintain a daily log (steroids, activity, nutrition, etc). Relax and get healthy again. Around 12mg I started hydrotherapy, easy stretching exercises and physiotherapy; I also attended a rehabilitation centre which provided a fitness programme, nutrition, sleep, etc. Not only did I take my steroids first thing in the morning with yoghurt and then rested for an hour, I also started taking Vitamin D, Omega and Spirulina (seaweed). I started on a paleo diet, swam and gradually decided to start running again ... barefoot! I was on steroids for 21months and never yo-yo'd going down by 0.5mg once I reduced to 5mg. I've checked my activity log and at 10mg I started doing light weights, small runs, and continued with the hydrotherapy and physio for the next two years. By October I returned to parkrun and gradually increased my distance until I managed to complete the Great North Run and UK 3 Peaks (for the umpteenth time) in 2014. BBC Look North followed my fitness development.
Be patient, listen to your body, rest when your body requires rest, join a local PMRGCAuk Support Group, visit Health Unlocked, use your family and friends ... do not rush the steroids. There are some great people out there who will support you and provide good advice. My main problem was that I did not have another fit and active young-ish athlete to speak to at the time but things are changing.
In the last six years I've completed over 250 parkruns, returned to the Himalayas and Atlas Mountains on a few occasions, run half marathons and challenge events. The best advice is to be patient and work with the condition, remain positive and enthusiastic for the future. I'm now the PMRGCAuk North East co-ordinator and more than happy to chat to you on health and fitness (I was a PE Teacher before I transferred into the Fire & Rescue Service). Feel free to follow me on Health Unlocked and I also have several "Living with PMR & GCA" booklets which I'm happy to post. I can be contacted on northeast@pmrgca.org.uk
Take care, stay safe, remain vigilant - good luck
SkinnyJonny 
"Running free again with a smile"
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