PMR and Excersise - Continuation of the experiment
Posted , 15 users are following.
4 years ago I started a discussion on exercise right after being diagnosed with PMR. I was 66 at the time. It is sort of a log of progress and struggles that I went thru while trying to reclaim my pre-pmr lifestyle. I decided to make new post because the old discussion was too long ( 12 pages). If anyone wants to see it you can find it at this link
So where am I today? Little overview - I am amateur triathlete that was preparing for next season in the fall of 2015, when I felt that something has changed dramatically and I was struck with terrible fatigue and was not recovering from exercise at all. First visit to family Dr and he was recommending to rest for a week and it will go away. After a week it become worse. Second doctor also recommended the same... Third doctor also... After 4 weeks I was unable to go get out of bed by myself . I went back to family Dr and explain what has happened and finally he took careful look at my condition, did blood tests and came to preliminary conclusion that I might have PMR. He reffered me to rheumatologist, which did many tests, CT, MRI, more blood tests and confirmed that I do have PMR. The last week before I was given prednisone was the hardest. It was not just pain for even smallest effort to turn in bed, but it was depression that was set in because I have gone from very healthy to bed ridden in just 6 weeks or so. Then the prednisone kicked in. It was not immediate, because I was started on relatively low dose (15mg), it took almost a week for the effect to kick in. That was the time I found this forum and started my old post - log on recovery. It took me about one year of gradual effort to recover to the point that I was able to exercise at the level before PMR.
So today I am at 2mg, still active. I start every day with 30 min walk ( have a dog to keep me committed) coupled with 15 min or so of stretching that focuses on shoulders and legs/hip area. I go biking in the mountains for about 80 min at moderate level two times a week. I use HR meter to gauge my effort. I know from my training days that my maximum HR pulse rate for biking is 152 and I keep my effort at 65-75% of that maximum ( 110-130BPM) during exercise. I also swim once a week, for about an hour ( 2.5Km) at the moderate level ( my average pulse is ~105-110). Each session ( biking or swimming) burns about 800-1000 Kcal). I have never had to go on any special diet. My weight was pretty much the same and my long term sugar level is fine. I do not restrict carbs, but my lovely wife cooks everything from scratch. We eat typical local fresh food (moved from US to Japan after retirement). Lots of vegs, rice, fish, and some meat. Although I consume lots of carbs, they are not highly processed. I also have a glass of wine ( or three 😃 ) with dinner. Pretty much I am back to pre-pmr lifestyle.
2 likes, 14 replies
celia14153 nick67069
Edited
So pleased for you Nick. Thanks for the update and for giving hope and a template for physically active people like yourself. 😃
Silver49 nick67069
Posted
That is an amazing journey with PMR. I hope you manage to get to zero because you have done so well managing the pain and doing so much exercise. After 4 years I managed to get off pred but my exercise pattern and weight gain have been a stumbling block. I am now back to gardening and the weight is reducing. Best wishes and thank you for the update.
jean39702 nick67069
Posted
Well done! So happy for you!!
carol99984 nick67069
Posted
Do you have any pain or stiffness to deal with?
nick67069
Edited
Thanks for the comments. Initially I was pretty naive and believe that everyone will benefit from my posts. Since I learned that we are all different, we have (had) different precondition and our PMR also can take different forms. I can only talk about what worked for me, and hopefully give you an idea what to try and see if it does the same for you.
I will take common subject of stiffness and pain that carol99984 had a question about. Simple answer is YES I had and still have stiffness and some pain. The question is what can be done about it.
It was different for me at different stages of my recovery. Right after I was diagnosed, I could hardly walk and my steps were short, limited due to stiffness in the upper legs / hips area. I started to do targeted stretching trying to loosen up hips in general. I also went to physical therapy and work on the same area. It helped a lot. My stride became more normal and walks became gradually longer. But it did not happen overnight. If I recall correctly it took several weeks of concentrated effort and once a week therapy session to overcome the limitation.
Next phase was to go back to exercise. I started with biking. At first short rides, which slowly became longer and longer. New activity created different issue - muscle pain due to exercise. Again , I went for PT sometimes twice a week. I was lucky that therapist was really good and could help me relax and recover from muscle pain. So, how do you differentiate between PMR and muscle pain? Although they are similar, pain from exercise shows up 1-2 days after the event and low to moderate activity, hot bath and stretching will help it. Also pain from exercise feels like tired, swollen muscle, dull pain. PMR pain (for me) feels like sharp stab, and only is there when I try to use muscle.
As aside note, it is important to keep intensity level of the exercise at low to moderate effort. It turns out that steroids interfere with muscle recovery ( change the protein metabolic process). Because hard exercise breaks down muscle tissue, and recovery is prevented by steroids, one can actually speed up muscle loss with heavy exercise. Moderate exercise has the opposite effects and speeds up recovery by increasing blood flow to the muscles without causing muscle breakdown that high intensity exercise does.
Another way to minimize morning stiffness is by changing time when you take prednisone. I have found out that taking some prednisone about 1-2AM and the rest when I wake up minimizes morning stiffness. Also, it is good to start the day with walk followed by gentle stretching. I try to stay physically active and do something at least once per hour during the day. It helps.
It took me almost a year to get back in shape that I was before PMR. It is possible, but it is not easy. One has to stay positive, and be willing to try ( and sometimes fail) in order to succeed.
celia14153 nick67069
Posted
Thanks for such a helpful and thoughtful reply
Silver49 nick67069
Posted
Thank you for such a full and helpful post. I am off pred but I get quite sore muscles if I do something which I don't normally do on a daily basis. I am now reminded by you that stretching exercises beforehand are the answer. I did them before going on to the rink when I curled. A timely and very helpful reminder especially as I am sore today because of what I did yesterday.
nick67069 Silver49
Edited
Stretching before had to be gentle and dynamic, not static. Consider that as warm-up. You dont' want to stretch cold muscles too much. After exercise you can do proper stretching because now muscles are warm.
Silver49
Posted
Thank you. That's exactly what I did when I was curling.....both before and after.
Joydeck nick67069
Edited
Also at 70, I'm 3 years into PMR and have tapered from 24 mg to 2.5 mg. Since pred, heavy exercise has only been a problem when I've rushed tapering, and then only for a week or so. I am pain-free except for exercise accidents.
I ceased dose-splitting at 7 mg, and take a single dose after breakfast without issues. I have no GP or specialist, relying on the wisdom of the two UK PMR forums.
How goes your triathlete pastime?
nick67069 Joydeck
Edited
It is just that... pastime.. I have changed focus on enjoying exercise and focusing on recovery and health. Until few years ago I would feel as if I was cheating and being lazy, but not any more. I was pain free until I got down to 3mg or so... Then PMR "add-ons" started to show up. First two times was palm/finger joints swelling that repeated itself at beginning of summer. I had to increase pred to manage it. I am again at low dose (2mg --> 1.5) and carefully monitoring what is going to be this time 😃.
Joydeck nick67069
Posted
Yes, at 2.5 mg I have now have faint hints of PMR again in the shoulders. Increasing to 3 mg fixed it last time.
We shall see.
dan38655 nick67069
Edited
Thanks Nick, for your summary!
Nick's PMR journey so much parallels my own.
Back in December 2013, still in my early 50's, I became fully afflicted within a few days, then also went undiagnosed for some weeks before I switched to Kaiser Foundation health care/insurance (where I finally got quick testing and diagnosis completed).
One difference in my case, versus Nick's, was that I never stopped my daily bike riding, even as I was almost unable to mount the bike (had to first lay the bike down, then pick it up as I stood over it). I believed at the time that if I quit my activities that I would soon be dead.
This may have delayed my diagnosis(?), as the doctors I saw knew that I had ridden my bike to my appointments, perhaps making my condition seem not as severe.
The rest of my journey is mostly about how/when I did and didn't adhere to an adequate dosage level, and my resulting relapses, ups and downs, with much seasonal variation to my dosage requirement (something that Nick also has reported here).
I recovered almost fully within six months, only to relapse for many months when my dosage fell below 10mg/day. Then it was seasonal ups and downs for about three years before I became wise enough to use an adequate dosage year-round.
I'm glad to have learned about how a prednisone dosage level below 6-7mg is merely supplanting the body's insufficient cortisol level while the body is somewhat in a state of cortisol regulation when taking only such a low dosage. So I am not fearful of boosting my dosage as needed to prevent the pains, stiffness and lethargy caused by PMR.
So now (currently at 1.75mg/day) I have virtually no symptoms at all, am quite active with the bike riding, and have even been able to periodically put in full days of doing construction work outdoors.
I mentioned in another post that my dosage requirement has decreased by about 25% each year, so my taper off of prednisone will likely stretch out at least another few years at this rate. But I suffer no discernible side-effects from the prednisone, which also prevents post-exercise muscle soreness and eases my seasonal allergies which can be severe in this area.
nick67069
Edited
I have not updated this post for a long time. Things are going well in my world. I have adopted routine of daily walks and 3-4 times of more intense exercise ( more intense in time , rather then speed). I do 90 min bike ride 2x a week and an hour of swim (2.5Km), but due to concern about infection I have stopped swimming and only do biking now. Also, since it is spring time, I "play" in my garden too.
As far as PMR, I am doing fine. I am at 1.5mg ( this is after 4+ years). I have tried to reduce to lower dose several times and this is my 3rd time and lowest dose ever. This time I have added CBD oil into a mix. It seems that helps to relax and with sleep mostly. I am taking very low dose anyway, but experimenting to see if it helps.