PMR and Excersize - Experiment in Progress

You've entered the territory where the adrenal glands become nearly as much of a factor as PMR symptoms.  So now instead of just juggling the pred and PMR balls a third, adrenal laziness, has been tossed into the air.  Good luck!  

Don't feel you must continue to plough on regardless, you may do yourself a better service by slowing down your pace a little bit, to minimize fatigue.

thanks Nick. its a long journey, well done, only once in my life, about 40 years ago, have I trained at anything like that level.

for a few reasons my meagre exercise plan was even more meagre for a few months. Away from home and achilles hiccough. Add a bit of weight gain, 5kg. Struggled to reduce from 3 to 2.5mg/day. Got back to normal meagre exercise (home after trip) but overdid it at same time as trying again to reduce resulting in much tiredness headache, signs of flare, a miserable couple of days in bed and 5mg, mood all over the place, backed off the exercise for a few days, then to 2.5mg and slowly built up the exercise again (to 20 min per more or less day somewhat hard aerobic.). Now feeling stable and more energy at 2.5mg. All a bt of a balancing act.

The brain gym (programming, electronics) reduced pred and nominal exercise feels like its working .... silly sounding milestone, I remembered a six digit number for more than two seconds, at times I've had to write things down where I couldn't copy and paste. Also concentration, I managed to read 85 pages of a book without wandering off. Still not as sharp as I was, difficult to separate age effect from poly and pred and unfit. Something arrived in post today and I'd forgotten why I bought it.

Got serious and chopped down a tree. Six years ago it took a day, it regrew, took 7 days this time, one branch at a time. Not because it was bigger, more because of  pacing ourselves. We are older and I've been polyed. Hopefully killed it good and proper this time. Planted half a dozen others, a bit shorter and smaller .....

A bit of motivation is perhaps next stress test in 4 weeks, anniversary of coronary stent. I'm hopeless at routine and regular, seem to need some sort of goal. I don't know if it turns into annual test or I'll have to find motivation elsewhere.

Good advice, thanks!  I am never going to "push thru " and I try to listen to my body response to changes. That is my guiding factor. Even rheumi, which was suggesting aggressive reduction in the past, said that 4-5mg is a critical level and I should take it slow. An I am. 

The funny thing is that between the time I posted original message and today my tiredness went away and this morning I woke up with renewed energy - so I went for and nice bike ride in the mountains.

That sounds wonderful.  We've recently discovered a walking trail just a five minute drive from home, where there's enough wild growth and mixed woodland that it seems a hundred miles from civilization (except we kept coming across houses as the trail actually winds around a lake next to a modern subdivision) and it was so refreshing.  Like the Japanese, we were forest bathing!

Hi Julian,

Regular exercise does not come easy. I find it better if it is integrated into daily schedule as useful, necessary part of the day. I used to walk a dog 3 times  a day before PMR. Now I make a point to walk 2.5Km in the morning and combine that with 15-20 min stretching ( total is about 45min), 15 min lunch time walk and 25 min after dinner walk, which I do every day. This burns about 400cal/day or 12K per month ( half of my total).  The key point is that one has to find something that is easy to do and make it part of daily schedule ( like dog needs walks).

The rest of the exercise I built up to over first 3-4 months, very gradually and methodically. I do use HR monitor and  have preset zones of intensity where I want to be during exercise.  You as an engineer should understand that. This is very important! Low to moderate exercise helps muscle recovery while on prednisone.  High intensity exercise accelerates muscle wasting and should be avoided.  For me keeping my HR under 120 is that "green zone".  If I do higher intensity exercise it is for very short time ( say 4-8 min) during an hour long session and always followed with slow and relaxing recovery to flush the muscle with fresh blood supply.

For your yard projects ( which I have also), the best is to have time limited, rather then goal oriented projects... Three will be there, and cutting it in 1 or 7 days does not make too much difference as far as project, but it makes huge difference on how much you will be tired. Take it easy... Use those projects as a relaxing physical activity that you need every day. 

It is good that you do stress test. I do it every 5years or so. While you at it, ask doctor if he/she can tell you your max HR.  This number is critical for proper planning your everyday exercise. 

I knew you were engineer before ( based on the way you write), but did not know that you are in electronics and programming.  I have very similar background... worked in electronics and did programming before I moved to a "dark side" - management.  My last job as a director of engineering, where I had to lay of most of the people I hired several years ago help me to retire early and never to go back to corporate work again.  This was during internet tech crash back in 2001-2002. The only programming I do now is system modeling for stock markets for my own research and trading.

I am glad that you found the walking trail that you like and is close to home. My favorite biking trail is about 15 min drive and it is old service road mostly wooded. From the top of  the mountain one can see the lake below and the pacific ocean, which is about 15miles away. Breath taking sunsets.  If you look north on a very clear winter day one can see mountain Fuji , although it is about 100 miles away, it still towers everything else.

ta. Ended in management also. Retired about 11 years ago at 55. Electronics is a hobby I've picked up again recently, programming I picked up along the way to make management easier. 40 years ago I etched my own circuit boards. Now I draw on computer and place an order - how things have changed.

Very similar story Julian.  I was in management in Electronics with a very large international company and took early retirement at 60 nearly 16 years ago!!  How time flies.

As a licenced radio 'Ham'  both in the US and the UK (KB7JL and G4VII) I was in the past, always etching my own PC boards but how times have changed - components are so small it's not easy to do now - plus of course the eyes are getting dim!!   PMR doesn't help either!

Good morning Nick, that's great news. I'm concerned that my lack of exercise will have lasting effects.

I'm wondering about trying pilates? I've managed a few laps of the swimming pool this week so at least know that's possibe.

the key is to pick something you like and can do it every day. Bulk of my activities is walking and I do it three times a day for about 90 minutes ( 50 in a morning, 15 at noon and 25 at dinner time).  Biking and swimming is only 2-3 times a week.

nick67069 wrote:

"the key is to pick something you like and can do it every day..."

This has been the key for me as well, allowing me to overcome physical and emotional impediments to an increased level of exercise, while reaping it's many benefits.

While we were both fortunate to have a "base" of fitness when pmr first struck, a more gradually introduced regimen of daily exercise (of the sort that one's skeleton finds tolerable) should be attainable by others to at least some degree.

It took me about a year to get my pred dosage down to around 5mg/day, and Nick's initial reductions were particularly rapid as I recall.

At around the 10mg level (after reducing from 15mg/day), is when I was able to make more rapid progress toward getting back to greater amounts of exercise.

I'm currently needing 4mg/day after 2.8 years, and regulate my dosage to control any symptom that reaches the level of preventing good sleep or preventing me from work and/or exercise.

I find that a very consistent amount of daily exercise allows me to best keep my symptoms in check and make the small pred dose more effective.

Taking even one day off from my regular level of morning exercise often causes a rapid flare of pmr symptoms, such as left hip bursitis pain that can immediately have me limping around until the next morning's pred kicks in fully.

It helps me to limit my carbohydrate intake on the days when I don't get quite the 1-2 hours of morning exercise.  A sugary dessert or large helping of bread or cereal, etc., can cause symptoms to return withing an hour or two!

I recall that at age 53 in December when pmr first struck suddenly, I had been staying indoors for three days due to a winter freeze keeping me from my daily cycling. That was an extreme weather event here and I only remember getting outside to cover the outside water spigots and wrap the outside water pipes to prevent them freezing. I am certain that this led to the onset of pmr in my case, and now am careful to get in a regular regimen of exercise every day, within my limits of not aggravating any painful, localized bursitis.

I also had to begin tugging on a pull-up bar to regain my upper body's usefulness, I began by just pulling downward repetitively, but was able to hang from the bar after a month or two.  Within another month or two I could pull myself up, and now do this almost daily, in addition to my cycling and occasonal light jogging.

Good work, Nick, in getting back to your former form!

If I am remembering correctly your pmr started a year ago?  And you are down to what, 6 or 7mg per day?

One more thing: I take on projects like repainting or rebuilding the decks around my home, but after just a couple of days I have to take a break and resume my cycling or jogging to restore myself for further work. This exercise is thus just as useful as an increased dosage of pred. I also make sure to adjust my food intake to account for my varying degree of calorie consumption, which seems to reduce my need for these work interruptions to a noticeable degree. So clearly there is something having to do with my body's metabolism that affects the onset of pmr symptoms.

You and I are usually on the same page when it comes to exercise, but not too many others are benefiting from it.

Yes, it is almost a year ( will be in December) when I was diagnosed with PMR and   I am now in transition from 5.5 to 5mg pred.

I too find that I have to be active every day. My core activity is walking and stretching.  I use biking and swimming to increase my endurance and strength. 

I remember you were almost off the pred 6 months ago or so.  What happened?

"You and I are usually on the same page when it comes to exercise, but not too many others are benefiting from it."  Could you elaborate?  

OK I will try to do short version...

exercise at correct intensity impacts the PMR just like pred; it opens the blood vessels and muscle gets more nutriens and waste products are washed away. If I miss my moring session, I am reminded with stiffness and lack of flexibility that I have PMR.

But there is more... Everyone talks about how pred blocks uptake of sugar into the muscles and thus could elevate blood sugar.  Pred also blocks protein building in the muscle (this is why we could lose muscle mass).  Now here is important part - Endurance exercise uses slow twitch muscles. Mild endurance exercise unblocks the protein building, so not only we dont lose muscle, but we can actually rebuild them to the pre-PMR levels. However, high intensity exercise, which mobilize  fast twitch muscles, will accelerate muscle loss. 

Bottom line without exercise, while on prednisone, one is destine to lose muscles.  On the other side, proper, low intensity exercise is beneficial, but this activity has to be every day.

I meant "not too many others are benefiting"?  Do you mean most people don't benefit from exercise or most people don't exercise?  

actually both. Few do exercise, and I hope that they benefit from it. In the begining of my "diary" on exercise I went overboard to try to explain HOW to exercise to benefit... It is important to have correct intensity (mild to moderate), length(60-90 min)  and frequency (every day).  My impression was that most did not care ( lack of response), so I stopped. As far as "most people don't exercise", what is your impression?

It probably depends where you live, whether people exercise or not.  When I've visited the US, and I'm thinking of a few specific cities, we felt nervous when out for a walk, because no one else was!  I suppose about two thirds of my friends are physically active.  So it's not really very good, is it?  If the inactive ones were to come down with a disabling disease like PMR they'd be starting at a rather low level of fitness.  But there is such a push on, now, to get people walking and taking part in sports and being active in the great outdoors that I can't help but think things are improving.  I live in Canada which I think is better than the US but no doubt not nearly as good as other parts of the world.  I personally have found things a lot more difficult lately as my pred dose is getting so low.  I hope my energy level starts to pick up soon because it's getting a bit concerning. 

There are many reasons why the thought of exercise may be unappealing to people who have been pollyed.

I suspect its more than a tad difficult to convince someone who knows that if they manage to walk 500m from home on a flat road they may not be able to walk home that any amount of exercise is achievable let alone beneficial. Add the wisdom of pacing to avoid flares to the natural human tendancy towards "either or" rather than balance and it becomes more difficult. Fear of flares is very real, we not only experience pain differently we remember it differently. To say nothing of the overwhelming wall staring fatigue that prevents any activity. Plus the contemporary difficulty of distinguishing between opinion and fact, or between magic wand and useful addition. And so on.

I suspect that the medical treatment of pmr, which currently seems to boil down to "here's some pred keep taking it until the pmr goes away" has a very long way to go. On this forum we've got as far as how to reduce the pred, pred side effects, some aspects of diet, how to pace oneself to conserve energy and some aspects of coping with the massive change that chronic illness brings. The conventional wisdom hasn't quite advanced to the more holistic approach which includes (without excluding other things) getting the blood flowing.

I can well imagine at some point in the future the "pmr clinic" includes apsects of exercise as well as all the other things we talk about here. It just hasn't become ordered yet. For me its not that much different to rehab after back operation, just subtly different emphasis and a lot more uncertainty.

The coronary rehab was wonderful for my pmr. But the supervision had little knowledge or understanding of the condition so while they monitored the heart associated parts they relied on me to understand the pmr. Now fast forward to the rehab that understands pmr differently.

Well done for breaking the mould and reaching milestone. I work on goals and milestones so hopefully have some understanding of what that means. My next milestone is hopefully accompanying daughter on a bit of steep hill walking as training for her even steeper hill walking - something I struggled to dream of a couple of years ago.

there is no doubt that place where you live makes a difference in many ways. I think you were concern about the safety, and justifiably so , if you are in a new ( to you) town. Also climate ( too hot , or too cold) makes a difference. But what makes the most difference is a person and the choices we make. Life is a sequence of choices.  To make real difference, one needs to commit to lifestyle change. This applies to exercise or diet or really anything... Unless we change lifestyle, nothing will change in a long run. I will use diet as an example.  Here on this site carbs are the bad guys.. Sometimes fat is the guilty substance.. Bottom line is that simple - if you eat more then you burn, you will gain weight. And it does not matter what diet you were on. Research shows that between 1/3rd and 2/3rds of people regain weight after they come off  of the diet. Why? The changes we make in our life have to be for a long term or it will ultimately fail.  It always starts with us.

I don't remember what exact dose of pred you are on, but I remember it was very low.  I think you are in the 'no mans land' and that your adrenals have to pick up the slack and, based on reading on this site, it may take long time, maybe months for it.

Reference to feeling uneasy in the US cities (I'm not referring to places like Boston and Manhattan where I actually felt safer than at home) but the eeriness of residential neighbourhoods in Indianapolis, Harrisburg and Stockton where there is no one around, except people driving by in cars, looking at you as though you were crazy.

My pred dose is 3 mg.  I feel things should get better the longer I'm at the level, and it's been months now.  Sigh.

 

Stockton CA was hit really hard during last house crises. At first it was bedroom community for people who could not afford bay area, then when the economy tanked in 2008-9, lots of people were "upside-down" on their mortgages and just left homes...   sad...not sure if it recovered yet...

We visited my brother-in-law before that.  They'd built what I consider a "McMansion" and I think the sale of this monstrosity was part of their retirement plan.  Needless to say the two of them, and their dog, are still rattling around in it!