PMR and Excersize - Experiment in Progress

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.

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 .

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....

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.

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

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.