Effect of PMR on physical activity

Loved your post!

Take care,

iellen

Thanks, nick, for the detailed information. I'll give that, or something like it, a try. Really would like to get my aerobic capacity back.

Find a steep hill, about 1/2 mile long.  Incorporate this hill in your daily walk, so that you have about a mile walk before hill, at leisurely pace of 18-20 min/mile, or whatever pace slow enough that you can talk with someone. You should not be breathing hard during this first mile, since this is just a warm-up. Then hit the hill at faster pace, not maximum effort though. You should be breathing very hard, but still not be out of breath. Do this ONCE a week. First week do it for 1-2 minutes.  Monitor how you feel the same day and the following day...If you feel OK, then increase the length from 1-2min by 1 min each week until you are doing 5-7 min of high level effort.  After the hill, do slow walk at least 10 min or longer to cool down. Stretch after the walk for 10-15 min focusing on your legs, instep and hamstring, calf or whatever feels tight.  You may feel some tightness in lower back from walking uphill. Make sure that you stretch those muscles too. Please report back in 3-4 months. I am curious if it will work for you.

Please - can I counsel a slower start - 1/2 mile of steep hill is one thing for a relatively young person who was already reasonably fit. 

Whether we like it or not as we age it is not so easy to simply jump into a training programme - even if you were fit before. It doesn't take long to lose fitness with inactivity or illness and age also has an effect. Yes, I know you said to start slowly Nick - but your approach leaves no option for bailing out if it is too much. I've been there - it is not only scarey but risky. 

And equally - anyone, please don't start an exercise programme like this without checking with your doctor first. I really am NOT saying don't, I'm saying, please be careful how you go about it.

There are two reasons I suggested the above ... First is that philoso4 was able to do 13min/mile before PMR, which is in my opinion amazing for age of 80 or so. Second reason for suggesting hill and sample exercise programme is to explain the concept of working slow 90-95% of the time ( hill or no hill).  It is a very gradual progress, and long hill is only needed for when you get in shape. Simple math he did 13m/mile - I suggested to start witn 1min and go no longer then 5-7 minutes after several months. For that, you need hill ~ 1/3 - 1/2 mile.

Just going by my husband - OK, he has only one lung and it isn't 100%. But when he hasn't a chest infection he can walk far faster than me on the flat or a gentle slope. As soon as that slope is a bit steeper I can leave him behind - and I can tell he has an infection long before he realises! It all depends on what is underlying the lack of fitness.

I have been fit all my life, and particularly so the last few years.  I kept walking and exercising all the way through undiagnosed PMR year.  Now, after about 18 months on pred I can tell you that for the last eight months or so I have found hill climbing to be far more difficult than it used to be.  I can leave my husband or son behind when on the level, but going up an incline I have to go so slowly they think I won't make it.  My legs hurt too much and I do not have the muscular strength to go quickly.  I do continue, but I absolutely have to go slowly.  

You are by no means as unusual as you think I suspect - and far less unusual than the people who are able to exercise with PMR. 

It IS possiblet to lose weight while on medication, including both oral and injected pred, as a lady on another forum has presented a couple of days ago. She has decided to try something - even though her doctors are not particularly worried about it as they keep saying they are going to "get her off pred soon". She joined Slimming World 7 weeks ago and has already lost 16lbs. 

My worst weight gain was due to PMR - for 5 years I simply couldn't exercise as usual. Then there was the Medrol interval combined with an achilles tendon problem that meant I had to use crutches - and you can imagine the pleasure of that with PMR! But I have lost it all - and have never stopped taking pred.

definitely unlucky, but I suppose someone has to be .....

I found I could go for days and weeks thinking "tomorrow I'll ... " and then put it off another day. Procrastination stole more than time.

I lost count of the number of last packet of Tim-Tams we'll buy that got bought. Just one more packet and then I'll stop ....... which reminds me, must ask daughter not to stock up for Christmas.

I think of myself as "lucky". But with pmr more than anything else I've had a sense of having to make my own luck.

This may come out all wrong, be totally inappropriate, and is just a thought - rather than "I'm planning on spending all of next year trying to get it off again." try "starting today I'm going to get it off again" and rather than "It's going to be a long road, and I really hope I don't suffer a flare and take backward steps." try "a journey of a thousand miles starts with a single step" or think of eating a chocolate elephant one bight at a time.

Very hard to be positive at times but with a bit of practice (hopefully deleted) it becomes normal.

I'll enjoy my Christmas without Tim-Tams.

There has just been a "lack of motivation" discussion on a lupus forum I participate in.

I think it is somehting common to autoimmune disorders - and possibly part of the disease process?????? 

At present I am trying to get the xmas letter done. I'm halfway there - but the finishing session is not attractive...

I definitely have not suffered from a lack of motivation.  Because my doctor wanted to put me on bisphosphonates I was determined to help my bones the natural way so I spend at least 2 hours a day, and probably closer to 2.5, in some form of exercise - walking, sometimes using Nordic poles, or wearing a weighted vest, tai chi, yoga and physio exercises.  This is on top of the normal activities of everyday life, like grocery shopping, cooking, hanging washing on a line etc., etc.  And still I have these weak legs.  I do not know what else I at my fairly advanced age, I'll be 70 next spring, could possibly have done to maintain or attempt to improve my fitness.  I know you fellows with your abilities don't mean to make people like me feel bad, but you do.  

apologies for adding to woes.

Certainly not intended. Post was for Flip who I suspect has been doing it hard recently. Difficult to find that fine line between encouragement and offense.

2 hours a day exercise is much more than I manage. I've never enjoyed exercise for the sake of it. I walk to enjoy where I am and get to where I want to be, that its exercise is secondary.

Having lived with chronic conditions for most of my life I learned fairly early that believing tomorrow will be better than today was very important for me. Of course I have to be objective and know that its a roller coaster, that today the symptoms are worse than yesterday and to an extent I have to accept that and pace myself and eat better, etc. But I also know that if I believe tomorrow will be better in some way it makes today easier. The thought of "giving in" is scary. For some that will appear as mind games, for others it may help. For me, if I don't my life would become very miserable.

My treatment for pmr is pred, pacing (and other behaviours), diet, activity, and state of mind.

I'm very much a fan of that great philosopher Master Yoda who, among other things, said "Try not: Do it or do it not there is no 'try'". But of course I'm human.

I tend to include motivation with thoughts of energy and fatigue.

I'm very wary of when I begin to find excuses for not doing things. I get very frustrated when its simply "I don't feel like it". I do distinguish reasons from excuses, some things are simply not possible at a particular moment in time. Simply "because I can't".

I think of myself as lazy. But that's more to do with how I do things not whether I do them or not. Pmr brought with it "not doing things".

Sadly, I've had to accept that it takes me longer to do things than formerly. State of mind again,

Pacing is quite useful mentally as well as physically. I find taking a break from trying to force myself allows me to return marginally refreshed and slightly more motivated.

Maybe I'm misinterpreting things, but I'm surprised at all the comments about "lack of motivation"...as if it means one is lazy or that it is not particular to Prednisone reduction.  During my reductions on Prednisone, I suffered terribly from fatigue which I would definitely say included lack of motivation for the pure and simple reason, I was too exhausted to do anything.  When you are suffering from extreme fatigue, it's difficult just to put one foot in front of the other and you cannot imagine what it would feel like to feel good again and when you do feel good again, it is such a surprise.  That said, it's not that I wasn't busy...I continued to organize my group, schedule multiple, monthly events that I had to prepare for and attend no matter how tired I was.   I played pickleball, and I walked with my walking group, admittedly less walking than scheduled but I walked.  But..on those days I had nothing scheduled, yes, I was totally unmotivated and gave in to the fatigue and slept on the sofa all day.  Now on 1/4mg. for the past couple of weeks, am consumed with energy again...which I am hoping and praying hangs around.  Not sure where it's all coming from.  Actually today I could have used just a wee bit less.   

It seems that every time I try to help with exercise, I upset or make sad some people with my writing. I stress that I meant no disrespect to anyone.  I am just trying to convey how to improve and get better thru training.

Most of the people try hard and actually exercise at too high level, which makes them tired.  Yet that level is not high enough to get better. Let me try to explain.

Say hypothetical person has resting HR of 60 and maximum HR of 160, giving the working range of 100.  What is considered exercise starts at 45-50% of that range and goes up to 100%, so exercise range is ~105bpm to 160bpm.  Lets' say that if you are at 100-115 we will call that Level 1, 115-125 Level 2 , 125-140 is Level3, 140-150 is Level 4 and 150-160 is Level 5.

Level 1 and level2 are called recovery zones and this is where you want to spend most of your time (90%).  You should avoid level 3, which is called gray zone, that will make you tired, but it is not high enough level to make you more fit.  When you are doing interval training, you want to work in level 4 or 5.

Interestingly enough, most people try to exercise at level 3, which will make them tired and in extreme cases will lead to injury.

If you walk at easy tempo most of the time, and then hit  hill with an effort that would be at level 4 ( breathing heavy, almost out of breath "give me all you got", for 1min , then go back to an easy tempo to recover, you should improve over time (2-3 months). Like julian said " something changed and I can go uphill.."  First week you do level 4 activity for 1 min, 2 min second week, etc. until you are up to 5-7 min.  You would do this "interval" training only once per week. The rest of the time do it at easy speed.

To Anhaga: 2 hours is more then enough to get fit. I average about that per day.  The key is how to train.  I am guessing that you are always doing the same effort at the same speed.  Maybe a change in training will help you to conquer those hills easier.

to julian: I don't dislike exercise per say,  unless it is connected with something useful or gives me pleasure I would not do it. I could not stand working out in the gim. My walks have purpose - I walk a dog, 3 times a day 5-6Km... My biking is in the hills thru the woods, in the hills above the lake and further beyond the lake there is spectacular view of pacific ocean. I feel rejuvenated after a ride. My swims are usually in the open waters and only during off season I swim in the pool. For me swimming is like meditation, weightless gliding thru the water. 

I think you are misinterpreting things - the "lack of motivation" I meant is a totally different animal from not being able to do things because of fatigue. It's that there are things that should be done - but although they are sedentary you can't be bothered. For example, I have a letter to write - same skills required as posting on the forums. I really cannot get my head around starting on it, but I'm able to empty my email box. The others in the lupus discussion I mentioned felt a similar lack of motivation.

Nick - not upsetting me, I was just adding a codicil for onlookers! I knew what you meant.

Part seems to be that people on the forums (I'm really not saying anyone in particular so don't feel it is you) don't see who a post is aimed at, it says who it is responding to at the top of every single one. Sometimes they are part of a general chat - but people seem to feel it was specifically aimed at them when it wasn't.

In that case - perhaps it has to be a case of "If the hat fits, wear it..." If it upsets you personally - maybe there was something to hear in it? Only each of us can know that.

I guess I don't express myself well, but yes, that is exactly what I meant by lack of motivation.  You just don't want to do what you know you should be doing but, again, I associate that with fatigue.  When I'm wasn't fatigued, I had motivation.  When I was fatigued, I didn't.  And just in case anyone thinks I was offended by any of this, absolutely not.  I was actually just trying to explain what I went through for those who might be feeling they shouldn't feel lack of motivation going through all of this stuff.  I do know what you mean though...I love scheduling my meetup events (usually) and I'm pretty good at emailing...but pick up the phone to make a call I should make...mmmm...notsomuch.   I wouldn't associate that with PMR or GCA though other than not feeling well.  Would definitely associate it with Prednisone, but excluding illness and medicines, isn't that just life?  Lazy days...everybody needs them.  

No - again, it wasn't aimed at you, it was very general on this occasion!

And the upshot of the discussion on the other forum was really that it isn't related to the drugs or the fatigue necessarily  - because by no means all of us could identify fatigue or anyhting common except autoimmune disorders, all different really! I honestly can't blame fatigue these days.

But it's also not lazy days, unless we are bone idle and NEVER want to do anything! It's certain things more than others. I sometimes feel like screaming "Just let me do what I WANT to do, not what I SHOULD be doing."

When it comes to housework though - well I guess I would never do that... 

I didn't think your comments were aimed at me.  Just making sure no one else thought I took anything on here personally.  Believe me, I would have shot back if I were offended.   I hear you on the doing what you want, not what you should and agree, but as far as lazy days...sometimes for me that's exactly what they are.  I relish in them.  I am going, going, going and doing all the time and I need my quiet time at home, and not when I have to do housework or computer work or some other form of unpleasantry...some days that might mean doing absolutely nothing...of substance anyway...and not feeling a darn bit guilty about it.   Well...maybe just a little...but not much. 

I guess that while I can somewhat separate fatigue, energy and motivation they are also all related for me.

I suspect that once having become aware that I don't feel like doing things as well as not having the energy to do them I struggle to find the motivation to do something about it. That wall staring fatigue is quite debilitating.

But somehow I find a way. As do we all. Eventually. I invent a goal. And break it down into little tasks, until one is small enough that I can feel like starting with some chance of finishing. A bit like pacing, small chunks at a time and not too many.

Some days its as near reaching as simply getting out of bed. Other days its a long walk. But its no use planning a long walk if I don't feel like getting out of bed.

The paradox for me is where do I find the motivation to be motivated. 

Its 5am here. The dawn chorus is in full flight. Well, full voice at least. Another hot (35 degree) day brewing. Sun is just about to poke its head over the horizon. I feel like strangling the cockerel that's a way away on the other side of the river.

I think I'll take my tablets, close the curtains, and go back to sleep. 

hinking about what you said, I can't say that I any longer am "going,going, going..." and I still feel really guilty if I don't do things.  I think my particular issue is that I'm simply worn out.  I am so tired of having to be the one who does things.  The dull stuff.  Like wiping the kitchen counter, cleaning the toilet, doing the laundry, changing sheets - all the really dull necessary things.  Don't say I should leave them and hubby will pick up the slack.  Tried that and the only result was I had more to do later.  It's simply demoralizing.  I wish I had the courage to run away from home!

I have made my peace with that - I don't do it. Dust is very patient - it will wait! And it is the same amount of work after 3 weeks as it was after 1. The kitchen counter is reasonably clean, knives and a chopping board that goes in the dishwasher are perfectly clean. No one has ever had food poisoning in this household. When visitors are on their way - I get the cleaning lady in - or OH does actually clean his bathroom which is the one visitors get.

That's all very well, but I already don't do enough as often as needed to have the kind of uncluttered place which I'd like to live in.  It is what it is and usually I try not to think about it.  This thread kind of awakened my suppressed feelings of resentment.

Thank you for the tip, however I do vary things a bit, including where I walk, how long at a time, sometimes with Nordic poles, usually not.  Where I live is a small city built over glacial drumlins so we have a lot of sort of rolling hills and it's difficult to avoid them no matter which direction you go in.  I did buy a treadmill a couple of years ago but find it terribly boring.  Main reason for exercising every day to a reasonable level (10,000 steps a day, sometimes more, sometimes less) is because I'm afraid of osteoporosis.

Had to chuckle at your post.  I really do feel your pain Anhaga.  Having been divorced long ago with one child, I have had to do it all myself.  There were days I would think..."if only there were someone just to change the snow treads...or take out the trash." Just one little thing off my shoulders.  Believe me when I say I am worn out in that area too.  It is the meetup group I organize that keeps me going and going and has kept me going through the worst of PMR/GCA and Prednisone. I keep the group so active everybody asks me how I do it, but I like it so that helps.  It's the things mundane things as you said like paying bills or cleaning house that bogs me down.  I've given up trying to stay on top of it.  I do what I can and if I need to hire someone on occasion to help, I do.  So don't feel guilty...(maybe run away from home?)     At some point in our lives, we deserve some pleasure and escape from the drudgery, don't we?  ...Don't really run away from home though, but maybe a vacation?

On the other hand - I am still married after nearly 45 years and just have one child at home: my husband! He can empty the dishwasher and clean his bathroom - and that is ALL he does! He does do the money side so I can't complain too much there. But the physically demanding jobs I detest because they make me hurt? Cooking, laundry, other housework - all mine. I have stood at the other end of a phone describing the actions he has to go through to wash underwear and shirts when I have been away. I wouldn't mind so much if it were just my own mess I was sorting out...

Yes, I understand. Kind of like the old song, "One less bell to answer, one less egg to fry."  It does have its benefits...but then I have 3 cats so staying on top of the dust and litter issue kind of diminishes that benefit.  ~Well, this has kind of turned into another whole topic.  Maybe there should be a support page for the daily doldrums?

That's it exactly.  However I believe it's been shown that as people age together they tend to keep each other mentally healthy, partly because they can catch each other's mistakes or compensate for forgetfulness.  So gotta take the bad with the good.