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.

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  • Posted

    Hi Nick, I'm also a bike rider who came down suddenly with PMR two years ago and had much trouble getting out of bed.

    Even pre-diagnosis though, I managed to climb on my bike and do some real mileage every day.  Getting on/off the bike wasn't easy but I put in the daily miles and am so glad I did. I also lost about 15 pounds, never gained it back.

    Recovery began with Prednisone at 15mg about 3 months into it, and I felt much, much better, even stepped up my training over the subsequent three months and did a few cyclocross races during that first year.

    When I tapered down my dosage is when symptoms began returning, eight months on or so when my 1mg/month reductions caught up to me at around 7mg/day or so.

    It has been another full year now, and I have only been able to taper down to 3mg per day, so still just managing my symptoms to an "acceptable" level, and only managing to do a couple of races per year so not at my best/strongest.

    Let us know what treatment regimen was prescribed for you, and how it is going.  This will take awhile, likely a couple of years or so like me, but there is a LOT of variance on the recovery time so you may recover more quickly or slowly.

    Do try to be creative in adapting your exercise routines to what your body has less difficulty with, so you can be active every day like me. I ride a road bike in the hills, so might be quite different than your more-aerodynamic triathlon form(?).

    Also try to get the whole skeleton onto it while riding, which loosens me up (though I still get on and off the bike kind of slowly).

    Last thing is that too much exertion (or too low of a steroid dose) can at some point induce a weakened, fatigued feeling, so you'll want to try to stay just below that point while exercising. I violate this rule all the time and sometimes leave myself feeling lazy for a while, but no harm done as far as I am concerned, especially since when I exercise more I usually sleep better.

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    • Posted

      good report dan. should help a lot of us. In my experience exercise is primal in facing off against pmr. thanks again.

       

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    • Posted

      Hi Dan,

      I wan to thank you for your posts. It helped me a lot, encouraged me to not wait until PMR is gone to get back to excercise. My onset of PMR was sudden and although I lost 3Kg in the begining, I have gained most of it back already. I am probably not going to be as agressive as you are ( I have stopped racing 10+ years ago and sold 3 out of 4 bikes I had). Triathlon requires too much time commitment ( at least 3hr/sport/week). I only kept mountin bike, because I felt that for the time spent I get better workout ( like you said it uses whole body).  Depending on the season, I usually practice 2 out of 3 sports, to keep in shape.

      I do have question for you regarding what do you do during the transition week(s) when you tapered down your dosage? Have you reduced training load or did you change anything? 

       

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  • Posted

    Thanks everyone for responding to my post!  Let me begin with explaining my thinking  about PMR and  exercise....

     

    There are several elements that helped me compose my plan for recovery:

     

    1- Anyone who trained for racing knows that hard interval workout will cause muscle  damage and swelling and inflammation. You feel weak at first, and then muscle rebuilds and becomes stronger.  I found some similarity to PMR, because it felt just like I had very , very hard workout.  The best way ( in the past) for muscle to recover is to follow hard workouts with slow, long exercise at very low intensity level.  This  pumps blood into the muscle and washes away lactic acid and reduces inflammation. I was hoping that gentle exercise  will have the same effect on PMR.

    2.- I lost 3-4 Kg during a week before treatment started and was concern that laying around would cause permanent loss of muscle mass, which is very hard to rebuild, especially at our age. I knew I had to do something to prevent that.

    3. I have physical therapist that I used to visit once a month to take care of  "weak" area that developed  while exercise . She has magic hands that would find tense, or inflamed muscle and massage it and /stretch it to help with recovery.  After being diagnosed with PMR I started going twice a week. This helped me a lot.

    Note: What I observed is that from PMR muscle gets "short". It is almost as if it is contracted, tense and not flexible. My goal was that with physical therapy I would try to stretch it and also focus on flexibility, before I try to make it stronger. This should improve blood flow and speed up recovery.

    4. My dog ( weimaraner ) needs 3 walks a day or he would drive everyone crazy. I had to walk him no matter what.  What I did not realize at first that I also needed those walks just as much.

     

    Week 1

    I began therapy on Thursday, Dec 17th. Week before, I was taking pain and anti-inflammatory medication ( similar to ibuprofen) . I had light fever, and pain pretty much everywhere, especially in shoulders and legs.  While I was resting, I started to read about PMR and this is how I came across this web site.  I moved to Japan several years ago. When I was talking about "getting out of bed" it was really figure of speech.  Here most of the people sleep on futon, which is on the floor, which makes it much harder to get up. I had to literally rock myself towards the table, grab  to the edge or the leg and hoist myself up.

    I did not feel much relief from symptoms in a first few days. By Monday next week things improved.  As soon as I felt a little better, I forced myself to take walks ( with dog) , each day a bit longer. This did cause some pain in the leg muscle, but it was a "good" pain.  It was a pain from tired muscle, not a sharp pain like from PMR.  To help in recovery, I started going for a massage on Tuesdays and Fridays. Also I would take long hot bath at night.

    medication: I was taking 5mg  in the morning and  10mg late afternoon + antibiotics .

    Week 2

    Things were getting better. I could walk now usual walk ( 1 km)  once or twice a day. My steps were getting more steady, and speed was slowly improving.  What I noticed is that I would not feel "normal" until very late in the afternoon, so I decided to change time I take medication. Now I took 10mg in the morning and  5mg at night. Immediately after morning pills I would go for a 1km walk and that seems to help me to get to  "normal" by late morning. At the end of  week 2 ( Dec 28th) I have gone for checkup to the hospital. Blood test showed that  inflammation and sedimentation indicators were almost back to normal. I explained to specialist what I have been doing and he encouraged me to continue, but be careful not to do too much.

     

    Week 3

    Steady improvements.  I was now walking three times a day and feeling much better. I still went for physical therapy twice a week. Things were looking up.

     

    Week 4

    Much better. I am up to 5-6Km walks a day. I even went to try swim and did about  2 x 500m  + 2 x 5 min walk in chest deep pool. I think I might have crossed the "line" , because I felt really tired after. Next day I went for massage to relax area of the body I used.

    Here is how my typical day looks like during the fourth week after treatment started:

    - Get up around 8am, have some yogurt and fruit  before  I take 10mg prednisone + antibiotics ( daiphen) + Lansoprazole (15) to prevent intestinal ulcer ( one of the side effects of  prednisone).

    - Take a brisk walk about 2.2 Km. It takes me about 25-26min. I stop after 20 min or so and do some light stretching.

    - Walk a dog  after breakfast, about 9:30 or 10AM - 1Km  16-18 min casual speed.

    - Another dog walk, about 1Km after lunch

    - nap in late afternoon

    - After supper I take second dose of prednisone 5Mg  and, you guessed it, walk a dog again smile.

    Note: the reason doctor split medication in two parts is that I have extended day and I am up until 1-2 AM .

    I am scheduled for another checkup, blood work etc January 12th. I will post the update after....

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  • Posted

    Nick, even though you will almost certainly find that "progress" toward full recovery can seem hopelessly slow at some point, I hope that you can stay with you program and report back once in a while.

    As to your point number one, and the inflammatory response post-exercise, note that prednisone greatly blunts the typical sitffening of muscles following your workout and after the subsequent lunch.  I used to have trouble walking downstairs after an hours-long workout in the hills, but since coming down with pmr and starting on prednisone, my leg muscles don't stiffen nearly as much after those hardest of workouts.

    The prednisone (even at the low dose of just 3mg that I have worked down to over 21 months) also has eliminated the allergy season (hayfever) for me.  I will no doubt miss these benefits of prednisone therapy (after my pmr goes away and I have to do without prednisone).

    Also, I have changed my dosage schedule to taking the whole 3mg late in the day, simply because my most-intolerable symptoms (such as ear-ache) were occurring at night, interfering with my sleep.

    I tried stepping down to just 2mg last night, after a few weeks now at the 3mg level (down from 5mg in early November), but awoke after only one hour with head, neck and ear discomfort.  So I chased down another 1mg with 2oz of plain yogurt and got back to sleep within a half hour, and am not feeling bad this morning. I will be running my neighbor's sporting new herding dog in an hour or two and am looking forward to it.

    One more thing Nick, I lift very light weights every day, and can feel the improved flexibility within just a couple of rep's!

    I'll sometimes have evening coffee and then do this for an hour or so, inventing new routines as my condition allows. This week I installed the pull-up bar, and I do both stationary pushes and pulls with it already.

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  • Posted

    EXERCISE AND PMR

    Hi everybody. I have rapid onset PMR which was quickly diagnosed. Started on Pred 2 weeks ago at 30mg which did not work. After a week started taking in 2x15mg doses  rather than all at same time. Now down to 10mg morning and 10mg evening. Pain now totally under control. (almost!) Medics a bit confused why splitting doses works better than one big one so more tests planned.

    My interest is getting back to running and golf. I used to run 20k per week and golf twice. My concern is doing too much too soon: risk of worsening the PMR and setting off a flare; risk that Pred might mask the normal aches from running.

    First very gentle jog tonight and plan to increase very slowly. Will not start golf so as not to complicate source of possible flares.

    Will share progress if you're interested. Very interested to heaar other sufferers experiences with exercise. Anybody found any research?

    Andy

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    • Posted

      I don't feel that it is the case of pred masking the normal aches from running, since it isn't a pain killer.

      Rather, pred greatly blunts the inflamatory response, for better and for worse to a degree, since I've read that inflammation is one stimulus that promotes muscle growth.

      So perhaps best not to expect the usual rate or progress, i.e. results from traning.

      I did get up to racing level back in 2014 as I was tapering through the 10mg/day range, but also began having foot pains that required I buy new wider shoes.  That lasted about four months iir, and by the time it had cleared up I was near 6mg/day which is where my tapering had to be slowed due to onset of classic pmr symptoms plus ear-ache while sleeping.

      The sleeping issues did eventually define what my minimum dose could be, now at 3mg each evening.

      I ran the dogs yesterday, not part of my usual schedule, and felt hip-socket-area pain early on, but made it home ok and not feeling bad this morning at all!

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  • Posted

    January 12 Update...

    Great news! My blood tests came all clean ( CRP) marker for inflammantion is back to normal  . First test I did in November had the CRP @ 11.3, next one was Dec 28 was @0.7 and today it is 0.1!  From tomorrow I am stepping down to 12.5mg from 15mg dosage.

    Today I did something different. Ecouraged  and inspiered by dan38655 comments, I went for a mountin bike ride! What a trill!  I did it slower then usual ( before PMR), but it was a first "serious" excercise 9km, just under an hour, 1k ascent /descent each.~ 700 Cal used up.

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    • Posted

      Glad you could get out to play! I'm really missing my biking, but the one time I tried a VERY easy ride in September, my groin & thigh muscles hurt so badly the next day, that I was really sorry I tried. Very disappointing. I know I will get back to it eventually, so for now, I'm having to placate myself by going for long walks every day. Let us know how you feel tomorrow--I hope it will be good!
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    • Posted

      I'm not ready for the bike yet. Just completing the first four weeks of Pred after four months of being unable to move, watching the muscles wasting away so quickly. I'm just happy to get out walking and just did 14miles this week. Did three straight days of three and half miles, well that's my limit at the moment, nice to have a baseline to work with. Feels good to have a plan of action, knowing that I've got keep it gentle, little steps and all that.

      Ron

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    • Posted

      Hi Vickie, I know exactly what you mean.  It takes lots of preparation... more so that I explained. For example, before going biking, for two weeks or so, I included in my walks one hill that has about 50 steps to clime... this works your thighs muscles and also hip muscle that lift your legs ( same muscle that is probably causing your groin pain)... Do that for few weeks and dont forget to streach after the excercise.  See if it helps ...
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  • Posted

    Hi Nick, sounds great I am 49 and am able to do light exercise again. I do a short walk and with my work I do do a lot of moving , but I do like to hear what other people are doing. 

    Cheers Fiona

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    • Posted

      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!biggrin
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    • Posted

      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...
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    • Posted

      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...

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    • 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.

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