PMR and Excersize - Experiment in Progress

Currently I am focused on trying to "repair" my knee and hopefully start running again. When I do mountain biking, I test myself on 350m hill and the peak is 5km away from the bottom. It takes me 30-35min to clime and then I drop to the other side another 2-3km, before turning back, so total is about 14-15km and it takes me 70-80 min.  I swim 2.5-3km non-stop in a pool in just over an hour once a week. That should give you an idea of my fitness level. As far as strength recovery, I have not started it yet in any serious way. The kind of exercise I am thinking about is using my own body weight - like push-ups, pull ups, burpees, etc.  That is the plan, we will see.

I'm completely unable to do high intensity exercise, despite having tried to maintain what strength I had.  I seem to have developed myopathy, no doubt from being on prednisone for several years.  My doctor seemed uninterested, but when I asked her if things were likely to get better once I was completely off pred she agreed that they probably would.  Trying to do anything too strenuous now results in an injury of some sort.  Sigh.

So sorry to hear that! I worry about that happening too. Right now I’m not sure how long I’ll be on prednisone. I am also going to look into a relatively new procedure of cold laser therapy. It is supposed to help with deep tissue inflammation. Stay tuned!

I didn't expect this to happen, I don't think it's common; at least not many people mention it as a pred effect.  Mostly they say that PMR made them weaker, but that hasn't been my experience.  I have been getting low intensity light therapy to help with the PMR - shown to reduce cytokine activity in RA so figured it wouldn't hurt, and I think it did help me taper successfully.  But it's not a cure, either, and it's taken me as far as it can I guess.  It did lead me to a magic physiotherapist who is using this light therapy on my shoulder right now to assist with healing.  I don't know if that's what helps me, or her healing touch but a couple of days after a session I definitely feel much better.

Low intensity light therapy- how does that work and what kind of light? 

Does it promote Vit D synthesis in the body?

interestingly, an aside, I am taking rather high doses Vit D3 in cooperation with my pulmonologist and my blood levels are mid range. I wonder if pred interferes  that much with absorption. 

In my experience, the greater and more varied the exercise: the less the injury.  With PMR, I was determined to maintain exercise even before prednisolone but it was oh so hard.

Myopathy is another matter.

Yeah.  I still remember the evening I got down on the floor as usual to do my yoga and physio exercises (pre-diagnosis).  And afterwards it took half an hour to get back up.  After pred treatment I was back and at it fully, mowing lawns, walking miles, vacuuming.  I didn't know about pacing then, but seemed to be fine, until fatigue walloped me at 7 mg and that was the beginning of a long decline which I fear I have to lay at pred's feet.

It is a special kind of laser treatment which involves a pad full of led lights being applied to the skin for at least half an hour.  It wouldn't do anything for Vitamin D I shouldn't think.  It's been studied and found effective in treating injured tissues including brain injuries.  It has also been shown to be effective in treating RA because it lowers cytokine activity.  It has not been studied for PMR so any benefits are only anecdotal.  Because I'm in Canada there are many therapists offering it here - it was developed by a doctor at a Canadian university.  There are clinics in many other countries as well, although thin on the ground.  If you google light therapy toronto kahn you will find a link.

So you were able to exercise freely before tapering to 7 mg prednisolone.  Your fatigue at 7 mg sounds less like PMR and more like an interaction of prednisolone withdrawal and adrenal suppression.  If so, what can be done?  

Would a slower taper, approaching the 7 mg, and thereafter, have relieved your fatigue?  Would a small increase in prednisolone have eliminated all the fatigue?  

I am currently at 11.5 mg and not so far from 7 mg, and would very much like to continue my strenuous exercise until PMR vanishes.  Consequently, your experience at 7 mg fascinates.

I did not encounter fatigue until below 6mg. During taper, the first indication that I may have gone too far is fatigue. If I don't stop taper, then stiffness returns. By then I usually go back to last good dose and never let pain come back.  

I expect it was reaching the level at which my body had to start making its own cortisol again.  Given that my adrenals must be working (I've been as low as 1.5 and currently at 2.5) I believe it would have been counterproductive to have increased pred dose to deal with fatigue.  I wanted my adrenal glands to get up to speed and they wouldn't if I was constantly supplying the cortisol with pred.  I get the impression that this apparent myopathy I've developed isn't particularly common, but it is a fact that PMR affected muscles (never mind pred effects) do not heal as quickly after injury, and of course strenuous exercise causes a kind of micro injury in the muscles - that's how they normally become stronger from exercise - so I think you should be a bit cautious.  Nick is the expert here and has shown from his own journey a good way to maintain fitness.

PMR affected muscles (never mind pred effects) do not heal as quickly after injury?

My understanding is that PMR does not attack or degrade muscles.  Lack of exercise, for any reason, does.

 

I think the issue is the inflammation has an effect on the muscles.  As I said, I had no problems at all at the beginning.  I feel my issues are a pred side effect.  But there's something about PMR which makes it harder for the muscles to heal after exercise.  I know no more than that, but there have been discussions about this on the forums.  I think it's pretty clear that PMR as such doesn't affect muscular strength but the pain of PMR can restrict movement so much that if you aren't diagnosed for a long time you won't have been able to maintain exercise routine and there is then a loss of strength.  I actually think what I'm currently experiencing is myofascial pain syndrome and plan to discuss this with my physiotherapist next week as she may adjust her therapies.  

A decade ago, I spent a forgettable month in hospital confined to bed, losing nearly 20 kg, and was slim beforehand.  The loss in weight was entirely muscle.  Use it or lose it!  I took years to fully recover muscular strength.

The PMR inflammation has an affect on the muscles?

"The term polymyalgia rheumatica implies a myopathic process, but the muscle in PMR is histopathologically normal. It is in fact the proximal articular and periarticular structures (joints, bursae, and tendons) that are mainly affected in PMR."

After six months on prednisolone my muscles are as good as ever.

There was a study in 90's about the impact of stress on patients that were confined in bed. The way they simulated stress is by giving volunteers higher dose of  prednisone. They have found that prednisone changes the metabolic process for protein and impedes muscle rebuilding. Moderate exercise stimulated muscle rebuilding and overcome the prednisone interference. However, high intensity exercise had the opposite effect. Not only id did not help in muscle recovery, but actually accelerated the muscle destruction. This is why with PMR and prednisone ( higher dose) one should be very careful how hard they exercise. I found that "recovery" level of effort in training is beneficial for preserving muscles. If I exceed that level, it is for very short time and in the middle of workout, so there is plenty of time to recover from high level effort.

The study was done on healthy, young volunteers, not PMR patient, but the conclusion applies to us, because of the impact of steroids on muscle recovery. I can's seem to find link at the moment, but remember clearly the article.

That's the thing, Nick.  As I think I posted earlier in the thread after my pred treatment I was right back to doing everything I'd done before.  I've never been an athlete, but I've been active, and done pretty strenuous things.  Try mowing your lawn with a reel (push, non-motorized) mower for example, or clearing drifts of snow out of a driveway, especially if you're an aging female as I am.  And in retrospect I wonder if it was this belief that I was as strong and well with pred as I'd been before PMR which has led to where I am now.  I definitely injured myself shovelling snow and this had never been a problem in the past.  I asked my physiotherapist about high intensity exercise and she, who has a rheumatologist as a close friend and consults her about things like PMR, said in my case it would be a bad idea.  A couple of years later, of course, I know better than to even ask such a question!  But I do my 10,000 or more steps a day, plus must spend 45-60 minutes a day doing various exercises, and I think that's pretty good.  I don't want to be made to feel bad because I am now a relative weakling.  I've done the best I could in the circumstances and don't want to feel that I'm a failure because I really and truly can't wash the car or clean my kitchen ceiling without injuring myself.  So. thank you, Nick, for your post.  

You did not fail. The main thing is that you did not give up and let the PMR take the best of you. We can only do what is within our power. And as humans, we make mistakes, and hopefully learn from experience. Best to be careful and patient.  We are also getting older, so even without PMR and steroids, muscle mass is reduced every year.  My first serious injury was when I was 40+, when I tried to do what I used to be able to do and paid the price ( torn ACL).

Another hidden danger is that pred numbs the pain and it is easy to overdo things while on higher dose (above 10mg).

Yes! It’s so hard not to feel bad when you look and act normal! I am new to PMR, only 3 wks in for a diagnosis, but had it for 2 & 1/2 months prior to diagnosis . So painful and prednisone was such a relief. However, my Rheumatologist only started me on 10mg. After reading the mega doses other people were taking I asked why. He said the higher the dose the harder it is to come off. We shall see. I had a solid 50% improvement right away, then a very slow improvement (like the swelling in the back of my knees and my upper arms). It seems my arms are my weak link and last to let go of PMR. I am walking , putting 2 miles on my elliptical each day (but limited use of arms) I can do back raises, sit ups, stretches. Now Spring is coming and I’m a huge gardener. I have limited myself to 15 min of raking. I know when I’ve over done it as near waking my upper arms will be miserable! I’ve had to back off from my garden club, pickleball, Pilates, helping my husband with DIY projects.....and I don’t like to have to tell everyone I have a problem as I look so fit. But I am determined to keep at it and I am thankful for  Nick’s experience and advice. I feel your pain Anhaga.... and stay tuned to see how the reduction of prednisone goes.

At 68-years-old, high intensity exercise is scarcely possible although it seems strenuous enough when I run, cycle, skate, play badminton and tennis, and do gym and Body-Attack aerobics.  As well as PMR, I inherited from mother asymptomatic atrial fibrillation which imperceptibly limits exercise intensity.  I started on 24 mg prednisolone six months ago and have tapered to 11 mg. 

I would want a compelling reason to exercise less when I feel fine.  

From this forum, I have gleaned that the best approach to PMR involves tapering prednisolone at a dose just enough to avoid bilateral shoulder pain.  And like you, my first hint of PMR returning is shoulder pain just above the biceps. 

The slightest bilateral shoulder pain has been, and is, my signal to back-off a little from the taper.  So far so good.

Well I understand why you should not go and do high intensity workout because of the heart condition. But let me assure that even at young age of 69 they are possible. Let me give you an example. I use HR watch that records my heart beats every 5 sec while I exercise. I know my max HR rate for each sport that I train ( for biking is 152) and calibrate the watch appropriately.  The other day I happen to do one of high intensity sessions.  Normally I kepp my HR below 120 (in green on the chart), but for short time (60 seconds) I push HR into red zone ( ~140 and above). As you can see, I did it 5 times, and rested for 2-3 minutes in between. So I spent 5 minutes out of 80 in red zone and then did mild exercise the rest of the time.  I have done similar training before PMR and relatively recently started to do them again. 

Please see the pic attached

You are quite right that return of the original symptom is a real warning.  As we are all different, often starting our PMR journey with different points of pain, this specific advice is good for someone who started with shoulder pain.  Others will have started with pelvic girdle pain.  Or even something else.  

The secret really is to do what you can.  The mistakes can be either to do more than is wise, or not to do enough to maintain what fitness we have.   We are all individuals and will have different life experiences and so forth.  

I had both shoulder and pelvic girdle pain before prednisolone, with the latter the worst.  If I'm tapering too fast, mild bilateral shoulder pain is my first symptom. 

My atrial fibrillation is not life threatening and only restricts sustained, heavy exertion because my heart pumps with reduced efficiency.   Ventricular fibrillation, which I don't have, is life threatening. 

I Understand. Since we only have one heart (no redundancy built in ), it is rather important to make sure that it functions properly. I do make sure that I have no problem with heart and perform 12 min treadmill stress test ( Bruce protocol) about every 5 years.  Most of my exercise are done at 60-70% of max, but once in a while I push it above that level.  Before PMR, interval training was a way to improve overall performance.  Even now I can see the benefit of interval training, but keep in mind that although it is high intensity, it still is endurance exercise, not strength.