PMR and Excersize - Experiment in Progress

Posted , 31 users are following.

Hi Everyone!

In search for information about PMR I have come acress this site with lots of information and links.  I have learne a lot and in return I would like to contribute about the topic of PMR and excersize....

Background: I am 66 years old and have suffered first attack in mid November 2015... I have been fairly active person and have done some triathlon in the past, so not being able to get out of the bed on my own was pretty shocking to me... It took about one month to diagnose PMR and I started medication (prednisone) at 15mg/day mid December. 

If there is an interest, I would like to post about the progress in recovery, with special attention to excersize. I am seeng specialist every 2 weeks and complete blood work is done to monitor inflamation caused by PMR.

I would like to post what I have done thus far and future progress in (hopefully) sucessful recovery.  Please let me know if there is enough interest in the subject.

11 likes, 212 replies

Report

212 Replies

Prev Next
  • Posted

    Week #5 - Jan 11-16

    This week I had checkup and my medication was reduced from 15 to 12.5mg ... I have done walks daily ( average 6-7Km) and also I have switched to format of 2 workouts and one physical therapy per week.  This week workouts were:

    9 Km mountain biking on Tuesday

    30 min swim (no stopping), about 1300m - Thursday

    1H Massage/therapy Friday - Focus was on relaxing my back and neck (from swimming) and stretch/flexibility for hips and hamstrings.

    I feel a bit tired  and have some residual stiffness from this week. I will take it easy for a few days...

    Note: I track my workouts with small app for the smart phone - endomondo. It is a free app and it records distance, speed , etc and calculates calories used. Also, and this is the best part, it uploads the data to their site and keeps daily log. 

    I wanted to share my workouts and posted the web link to it about a week ago, but that message never "got approved" and never posted.

    Report Reply
    • Posted

      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.

      Report Reply
    • Posted

      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 ).

      Report Reply
    • Posted

      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

      Report Reply
    • Posted

      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.
      Report Reply
  • Posted

    THe following is the copy of the partial discussion from different thread, but it is related to excercise....

    EileenH > nick67069

    As Layne says, this approach(using physical therapist ) is associated with many risks. Many physiotherapists and, I would suspect, even more sport orientated doctors are totally unaware of the restrictions that PMR imposes. Your muscles are intolerant of acute exercise and repetitive and sustained actions are both totally unsuitable for rehab in the PMR patients. The blood supply to the muscles is compromised which leads to speedy exhaustion because of the lack of an adequate supply of oxygen and nutrients - claudication in certain muscle groups is one symptom - and then do not recover because lactate and other waste products are not removed.

    The exercises you can do should be restricted in terms of weights used and reps done and rest periods are essential in between. It is often difficult if not impossible to exercise on consecutive days because the muscles have not yet recovered from the previous activity.

    Layne's physio claimed to know about PMR - obviously NOT the PMR we have! If they had, they would have been well aware it is the only form of management of the pain and stiffness. So you do need to cross-examine anyone who says that sort of thing.

    I am not saying you CAN'T exercise and train - I'm saying you have to be very careful with building up what you can do. It took me from early December to late January to get to being able to ski all morning - I still could not do a long run in one and if I had one hard morning I needed the next day to recover. Short runs interspersed with the rests on the lift meant I could ski much more as did having a day rest between ski days.

    Report Reply
  • Posted

    Week #6 - Jan 17-24

    Adopted to lower dose (12.5mg) with no problem. What was new this week I completely switched timing of the medication to try to coinside with 4am and 9am peaks... Iit seems to be working.

    I followed usual routine of 5-7Km walks every day and 2 good workouts/week. THis time I swam 1.5Km on Tuesday and Thursday ( total 3Km). Whenever I swim, my sholders feel better. Massage/PT was on Friday - focus was sholders. I am trying to increase flexibility.

    Report Reply
    • Posted

      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.

      Report Reply
    • Posted

      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.

      Report Reply
  • Posted

    Week #7 - Jan 25-31

    This week I started transition from 12.5-->10mg dose. I am going to use slow method that start with 3 day old dose/1 day new...and it takes 16 days to completely switch. I still take 1/2 dose late at night ( 1-2AM) and second dose about 8AM to try to coinside with 4am and 9am cytokines peaks... It seems to be working.

    I followed usual routine of 5-7Km walks every day and 2 good workouts/week,  1.5Km swim on Tuesday and 10K mountain biking on Thursday .

    Report Reply
    • Posted

      Nick - unless my maths has gone wrong due to the fog of PMR - dropping from 12.5 to 10 mg is way over 10% recommended reduction, closer to 20% - hardly dead slow and steady?
      Report Reply
    • Posted

      John, thanks for the concern, It is exactly 20%.. you are correct. My rheumatologist is aggressive and blood tests look completely normal and I am completely symptom free..  I do have concerns about 20% reduction and that is why I am doing "dead slow and steady " transition process , so I alternate. per schedule, between 12.5 and 10mg. I started 3old 1new,... 2old 1new, etc and it will take me 16 days to completely transition from 12.5 to 10mg.. If I feel any negative changes, fatigue or return of PMR symptoms, I will change the plan.

      Currently I dont have any PMR symptoms at all and I can exercise at decent level of 60-75% of my maximum heart rate. For example I can swim 1500m in about 35min without stopping. This is what I would call easy pace... and it is only 5 min off from my pre-PMR time.

      Report Reply
  • Posted

    Nick, I'm not certain about this, but I think that your already being 100% symptom free, with or without prednisone, after just 2-3 months is exceptional.

    I did get my symptoms down to a minimum after reducing to 10mg/day some 8 months after my initial pmr occurrence, but from there I've had various symptoms return over the subsequent 16 months of slow reduction to my current 4mg/day.

    I can't compare my progress with blood work to yours, since my physician and rheumatologist have never ordered any more blood work over the last couple of years. Your rapid recovery seems amazing though.

    Report Reply
    • Posted

      Dan, I am still on prednisone, in transition from 12.5mg down to 10mg. I have had blood work done every 2 weeks since the beginning of the treatment and they are within normal range for the last month( CRP =0.1 and sed rate is 5 ). With no PMR symptoms, my rheumatologist decided to drop to 10mg during the last visit. From there on, reduction will be more careful ( 1mg or less). His target is to get me as quickly as possible below 10, perhaps 7-9 range and stay there for longer time.

      I contribute faster recovery to moderate exercise. I use religiously heart rate meter and  limit my level of intensity to "recovery zone". My target rate is 60- 70% of my max HR.  I never venture into endurance or speed/power zone, which are in 80-95% of the max HR. 

      (My) theory behind this is that inflammation of the blood vessels (capillaries) is restricting circulation, and it is my believe that recovery zone excersize supplies much needed fresh blood to the muscles providing them with nutrients and removing waste products from them.

      Report Reply
    • Posted

      Nick, I,m glad you brought up this theory as it makes sense for me too. I've found that if I go for a brisk 1/2 hour walk (or longer) I feel better - less aches and fatigue. But if I do other forms of exercise that don't increase my heart rate, like gardening or walking slowing, then there seems to be hardly any affect on my aches/fatigue. 

      Your theory clearly laid out is suddenly clarifying what my muddled Pred brain has been wondering about - so thanks for your comments!

      Report Reply
    • Posted

      Any level of exercise is better then none biggrin , so even your gardening and yard work counts!. Your heart pumps more blood and that is good for muscles. There is a lot written in sports literature on different zone of intensity and training.  Activity in Recovery zone helps muscle recovery ,as name implies.  Calculate your max HR as 220-age. So if you are 60, your max HR is about 160Bpm. Recovery zone for you would be 80 - 100, maybe 110Bpm... If you excide that level, you are in endurance zone and stress to your muscle is higher and this will induce some inflammation.  Going to 85-95% of max will definitely cause tears in the muscle, pain and inflammation. For healthy athlete, muscles recover and repair and becomes stronger. For us (with PMR) it is best to stay away from high intensity activity.
      Report Reply
    • Posted

      Nick, thank you for the calculations....it saves me looking up the formula. Sometimes I go to a fitness center and can therefore check my pulse on the treadmill and bikes but I kept forgetting to check the formula to see if my heart rate in the 90s was ok....and now I know that it is. 

      I appreciate your posts about exercise as I want to be active but not over do it and although you are way more active than I can be, your posts provide me info to consider. 

      Report Reply
    • Posted

      Hi Nick, I haven't regulated my effort at all, and haven't much noticed a difference if I was even taxing myself to up near 100%, really kicking out all I had.

      My PMR symptoms don't seem to affect my working muscles at all.  I have more like a bursitis condition that causes joiont pain, limiting my agility off the bike as well as my range of motion in particular.

      Being on even a very low dose of pred prevents me from having post-training muscle soreness of the type that would previously prevent me from walking down stairs after my hardest riding workouts. It also prevents me from having any of the seasonal allergies that I used to suffer from.

      I'm not sure what is requiring me to use a slightly higher 4mg to control a couple of specific, localized bursitis sites right now, but the slightly-higher dose has greatly increased my adrenal response to coffee and given me a lot more energy.

      I am making real progress with my weight lifting efforts, and just yesterday managed to do my first pull-up sets in several years, due in part to that extra energy. I am feeling celebratory about it.

      Report Reply
    • Posted

      glad that I can help in any way. I have learned from people from this site so much, that I felt I should try to give something back in return.
      Report Reply
    • Posted

      Dan,

      Let me congratulate on your improvements in weight lifting. It must feel good to progress in spite of PMR!  I have not started weights yet.. In time I will...

      I carefully read all your comments, since you are almost 2 years ahead of me in PMR treatment.  You are the one that encouraged me to try to add workouts to my "just walking" recovery.  But I am more careful as far as intensity of the exercise.  Even before PMR, my training was done with 80/20 split - 80% at  recovery level the other 20% was endurance and speed work. I found that gets me faster in shape then going all out all the time. I use HR monitor during training and download data to PC after for analysis.  With 3 sports to train in, I could not afford to do all out all the time.  In fact that was usually a recipe for injury.

      For now I am just doing recovery level exercise and if I exceed that level it is just for short time because I am  going up the hill that pushes my HR above set limit. 

      To give you approximate picture, my absolute max HR is 160 ( this applies to running only). For biking, my max HR is 150. My resting HR used to be below 40, but now is in mid to high 40s.  While biking I try to be in 105-120 range.

      I had no alergy or any reason to stay on pred ( other then PMR) , so I am looking forward to the day I stop taking it.  At the moment I am transitioning to 10mg and hope that it does not backfire on me. It has been only ~2 months since I started treatment at 15mg. Will see, only time will tell.

       

      Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up