PMR and Excersize - Experiment in Progress

I agree, I once asked Eileen, why can some people do much more than others....and just a little from me causes a flare-up...she replied it probably depends on how fit people are befrore getting PMR....having read these posts it `s obviously true....some people even strggle to brush their hair!....so yes, it`s wonderful to hear the progress of other people....but we must bare in mind sadly we can`t all do it...good luck to all of us for trying!

I am going to suggest that part of the reason that people who were incline to excercise before PMR are used to "push" themself a bit more agressively, and tolerate some pain, in order to get fit again. When I started taking a short walks in the beginning, I could only make small steps and it was pain to try to walk... Streatching and persistance and not giving up paid off in about aweek or so... Walking become easier... Then I started adding distance.. When I was happy with distance ( say 3Km), I started working on speed...do whatever it takes... just don't give up...

I am definitely not the sort to "give up" in fact have been told I`m my  worst enemy!  I always tell people my head dosen`t fit my body....I have had fibromylgia for many years....and adding the polymylgia has obviously made things much worse...pain from both is sometimes intolerable....but it`s the fatigue that floors me the most...and I have always said over the years...there are things for pain (usually to a point) but nothing for fatigue....and it`s such a timewaster!

I think when the weather eases (ground not slippery!) I will walk short distances even in pain....and write down the affects etc....it may sound silly, but in past years I have said, I don`t mind paying the price when I have done something to earn it....it`s when I suffer without doing anything I find hard....if that makes any sense?  When I first went on steroids I walked forever in first few months, husband said I was like a car with new engine!  It made me sad to think what I was missing, alas it didn`t last. I certainly won`t give up...it`s not in my nature!  Good luck and keep us posted...

Agree with you Nick - it was very hard at first to attempt any form of exercise without getting pain and cramps.  I followed a similar pattern by gently 'pushing' myself, not to the extend of going overboard, but slowly building back up - currently up to not quite the level I was pre PMR.

I also tried Tai Chi, which helped in the first few months, to ease myself into exercise and at the same time started to go for walks moving at a pace I could maintain, and slowly over the months walking further and faster.  I also ride a bike which I found easier as you can cruise but still keep moving and then continue pedalling again (fortunately I don't have many hills locally!).  I have said many times on the forum - I was fit and active all my life being right up into my 50's a long distance runner and involved in Judo (I was in the RAF team during my 20's).  I found my loss of mobility and of not being able to get around and do what I had always been able to do very frustrating initially.  It's taken me 18 months to overcome this frustration and I now feel better in myself (exclude the PMR itself) to move and exercise at around 90% of were I was.  Hope this is an encouragement to you and others on this thread. If I could use the phrase from a well known company 'Just do it!' you will get thru' the pain barrier.

Thanks for your real positivity!

Good morning Nick. 

I too keep a log on my phone. I use sportstracker and was going to suggest that those of us who like to get out for short walks, rides, whatever could get together, maybe a Facebook page, where we could share and give encouragement to each other.

i did my longest walk for well over six months yesterday. Five miles and am still feeling well (PMR notwithstanding). I think I'm a couple of months away from getting back on my bike but I've been thinking of getting a turbo trainer and converting it into an indoor exercise trainer to get my legs, and heart, a bit fitter.

Hi Ron, good for you! It feels good, doesn't it..

I used to use sportstracker until about 2 weeks ago, when I switched to "endomondo" for couple of reasons... It does everything that sportstracker does and it also logs all of the info on their web site, which can be shared publically. Allyou need is a link... Second reason is that I use heart rate monitor from polar, that is compatible with endomondo app, and would not work on Sportstracker ( they have their own ).

After dropping down from 25 to 20 mg Pred and holding for a week (too big a drop I know) I have been aware of my hips, collarbone and back complaining, mostly back around my kidney area. 

Consequently I have only gone out walking three times this week. My usual walk is a 3.2 mile route which has a climb of about 400 ft in the second mile. Well today I surpassed one of my targets which was to break the 4 mph mark. 4.2 mph to be accurate. Thursday I walked 6.4 miles which was a bit of a mistake and meant that I had to have a couple of days break.

One of the things I have noticed since being on Pred is my sweating. When I was running / cycling regularly I used to have a small patch of sweat on my shirts, nothing to write home about. Now, after my walks, I can almost wring my shirts out. I've never been a perspirer so this is a new experience for me. Anyone else notice anything similar? 

Sorry for the rambling nature of this post.

Ron

Baby steps... It is always good idea not to increase more then 10-15% distance, but I think with PMR we need to be even more careful.  I too overdid previous week on intensity, and this week I am very aware of it and taking it easy... As far as sweating, I did notice some increase, although I always came back drenched from my workouts... One thing that helps recovery is drinking water while you exercise. I bring water with me, about 1L/hour is what I need to stay hydrated.

Good to hear that all is going well Nick.

It sounds like you don't let bad weather interfere with yur daily walking, that's good!

I started lifting light weights, and can actually hang from a bar at this point, no small feat. I haven't tried swimming but it sounds like it might be a good idea, especially for my shoulder joints.

I would consider not dropping dosage by more than 10% at a time at this point.

Hi Dan, good to hear form you too! Weather in this area of Japan is pretty good.  It seldom rains, maybe once a week or less and never snows. Temperatures are usually in teens during the day, but occasionally we have cold come from Chine  and it dips bellow zero. Walking is usually not a problem, but I have froze biking couple of weeks ago, while going downhill.  I never biked in the winter, so I don't have proper clothes. Since I got some and in fact went biking today.  I have succeeded to clime one hill that I usually test myself. It is a tough one, and 6 years ago I could not make it to the top without pushing the bike for the last part.  I made it today without stopping. It felt good.

As far as swimming and shoulders, be gentle at the beginning.  I have adopted style of swimming that most of the power comes from body core, not arms.  Google for "Total Immersion" - book or "Kaizen Swimming" by Terry Laughlin if you want to learn more.

Since you mentioned dropping dosage, my rheumatologists just dropped it to 10mg today.  I have virtually no symptoms and blood test is normal (CRP=0.1 and ESR=5). He feels that the condition has stabilized and I should have no issue... Will see.

I have not done weights yet. I am doing calisthenics instead.  Waiting to get stronger before increasing load.