Hi Everyone
Does anyone know why you need to take it easy exercise wise with this condition?am currently on 8mg pred having yo-yoed up and down but now have a new rheumatologist whom I have faith in and am on a v slow tapering regime.I may have to have Methotrexate added in if I flare again.I was advised not to do too much exercise.
thanks for any comments
It can only be because exercise sets everything off. The only exercise I can do is walking. At home I have to restrict what I do. I can't use the vacuum cleaner or iron for very long and I definitely cannot lift or carry anything heavy. If I push it I pay for it very dearly at night with lots of pain and no sleep.
thanks I think I am very lucky although I had overwhelming stiffness and pain when I reduced down to 2mg of pred and my MRI result wasn't good showed a lot of inflammation in. my hips, now am on 8mg red I feel so. much better
Both the disease (PMR) and the solution (steroids) can cause the muscles to be weaker than normal. Plus they take longer to recuperate from exercise, which is why we always say gentle exercise, not repetitive (like gym circuits) nor too strenuous (like body building).
Most people can manage gentle walking, maybe yoga, pilates or tai chi, but like everything you need to build up slowly and maybe have a rest day to allow muscle to recover.
thanks you for your reply makes sense
PMR is not the actual illness - it is the outward expression of an underlying cause, in our case probably an autoimmune disorder which attacks various body tissues causing inflammation, swelling and pain which are what cause what we feel. The pred relieves the inflammation - and so the symptoms, but the actual disease continues in the background, attacking the body and causing not only the flu-ey feeling but also the muscles to be intolerant of acute exercise. As a result they don't respond well to over-doing things - especially repetitive actions - developing DOMS (delayed onset muscle soreness) that is more severe and last much longer than usual. It is possible to exercise - but you have to start from scratch, training the muscles. And when I say "from scratch" I mean it: you have to start with minimal activities, say a 5 minute walk out and back. If, when you rest on the next day, you feel OK you can add a couple of minutes - rinse and repeat. That way you can build up an exercise programme that doesn't leave you in a wimpering heap.
It may not be walking, I used to ski even with PMR and started each season with 3 VERY short runs - and went home! On our mountian it is quite easy to make the shortest run progressively a little bit longer, then go to 4 shorter runs, and so on. But I learnt the hard way that I had to stick to the programme. One day I felt so good after the designated number of runs I decided to do "just one more" - and about 3/4 of the way down I hit the brick wall of fatigue! The last 1/4 of the run took me a good half hour, requiring a long sit down!!! I did the same thing with aquafit - very low level at first, not even the entire class, but eventually I did it full on and for the whole session - but we are talking a few months to get there.
thanks so much, yes back in May I couldn't even do a flat walk of about 15mins without needing to sit down,and a few weeks ago I tried a 10 minute run and really suffered for about 4 days!when I told my rheumy had been for a run he frowned and said to reduce down the exercise.Unfortunatley before I became ill in a mad moment I signed up to do a Costa Rica bike challenge which is next Nov 360k over 6 continuous days, what a shame am thinking I will have to pull out of it, will wait till June to decide as bike ride is in Nov -thanks for your advice am beginning to understand more about this weird condition.I don't want sympathy but also get a bit upset when people say 'you look well' as if am making it all up!!
Tell them it's the drugs wot makes your face look so well and it isn't your face wot's ill ...
I fear that bike challenge may be rather ambitious. Just bear in mind that there are experts who believe that an excessive physical challenge can actually trigger PMR, or at least be the straw that brings it to your notice. Not long before mine really set in I had done a day hike at 2000m around a local peak. I had a wonderful day - but the DOMS was like nothing I had ever had before and lasted several weeks...
I have to agree here, as I think my PMR was triggered by overdoing the exercise. I was focused on toning up and determined to exercise three or four times a week come what may, even if legs were aching, and then we went on a good 8 mile hike in the Lakes, followed by a 16 mile bike ride even though I remembered my legs were aching from previous exercise, but determined to ride through it. Then all my problems started, very quickly, so am thinking I had overdone it. I should have reminded myself I am not a young twenty year old anymore. Although I have always been fairly active all my life. Which is why this illness has hit me hard and makes me quite fed up! Maybe all these years I should have been more of a couch potato and eaten a load of rubbish! X
Yipes, that bike event may be a spoke too far! I pulled out of a walking challenge this summer as it was just a hike too far! Take it easy!
yes thanks even though it's not till Nov I would have needed to start training this June so bit too soon would rather get better than spoil it all
yes think it's curtains for the bike ride thanks will go and join my friends to support them and have a holiday instead methinks!!
Ha! That sounds a far better plan!
Not sure if this was wise, but I've enrolled for two exercise courses at the Mary Ward Centre in Queen's Square starting in January. One is 'Exercise For Better Balance' on Wednesday, and the other is 'Fitness in Retirement' on Friday. I asked my rheumy if she thought they would be okay. She said yes, but didn't really look at the details. However reading the prospectus, the tutor (the same for both courses) is obviously experienced and knowledgeable about exercise for older people and anyway, each course is only an hour per week. I'm building up to the start of term by walking at least a mile a day and doing a few exercises from my 'Move It or Lose It' DVDs (much neglected until now, I'm afraid).
I am in a seniors movement and music class and I love it! Lasts about 75 minutes with two breaks. Some exercises are seated and we are all mindful of our medical conditions as is our instructor. I feel much more limber. Once a week but I worked up to the time.
Sounds pretty good to me - an hour at a time is ok
I find that a limited amount of walking or gardening are all l can manage ,it is easy to overdo things so it is important to pace yourself to avoid a flare up of PMR.
Well, your rheumi is probably concern that you will do too much too soon. Acute exercise is not good for PMR patients, but when it comes to biking, I would say it is one of the best choices for PMR patients. I have had PMR for 3 years now, and I am also avid biker. When I asked my rheumatologist about exercise, I got similar advice - lets first take care of PMR and then we will think about exercise. Naturally, I ignored the advice and started biking and swimming about 2 months after being diagnosed with PMR. It took me almost a year with gradual increase in length and intensity to get back to the same level of fitness as I had before PMR. And I repeat GRADUAL. But the most important thing is - it can be done. I know that I achieved the same level of fitness because I tested myself on 5K clime to the top of the hill that I did regularly before PMR and was able to equal ( actually better) my time.
If you were in good condition before PMR, it is much easier to recover. In addition, certain exercise help muscle recovery because it stimulates and increases blood flow thru the muscles.
I now do at least 2x 20K bike rides in the mountain and swim 2.5-3K laps every week. and yes I am still taking pred ( currently 4mg). On the different site (Patien.info) I have kept the log of my progress in real time over first couple of years. I would not give up on your biking trip, especially if it is not going to be race type of the speed, but casual cruising speed. 60K/day is not too much if you train for it, that is only 2.5 to 3hours of biking , if the road is flat.
Hi nickm001
I wonder if the pmr is in your hips? I can't imagine doing all that bike riding if your hips are affected. I am so happy you can perform at that level. I am affected in my low back, hips and thighs. Repetitive exercise is the worst thing for me.I have days where I am lucky if I can walk 2-3 minutes ; let alone do a walk-a-thon or bike ride.
Glad you can stay healthier than most of us
Take Care
Lin
gosh really sorry to hear you are so badly affected- yes my pelvic MRI scan showed widespread inflammation, bursitis etc- back and thighs affected and shoulders- if I drove anywhere and sat for 30mins I could hardly walk once I started to get going I loosened up
are you on prednisone?how long for?are you happy with your rheumy?
take care D
I was diagnosed with pmr 2 years ago this month. I am now on 11mg( down from 20mg) and thinking of increasing to 12mg for the rest of the holiday. I have lots of pain and feel miserable.
I love my Dr.. She is very kind and considerate and always gets back to me within a day if I message her with a question.
Take Care
During the time I had PMR and was NOT on pred I still skied - and found that the hip movement in skiing was ideal to get PMR-hips loosened up. I crawled up the mountain - but walked home in relative comfort!!!
Hi Linny3,
Of course PMR impacted my hips, especially groin and upper leg muscles. Before I was put on pred, I could not get out of bed and go to the bathroom by myself. Wife had to help. It was very depressing. In a first few weeks after on pred, most of the pain was gone, but stiffness was still there. Considering that I was in very good shape before, this was very hard to take. I went to physical therapy and worked with them to gradually mobilize the hip and shoulder area once a week. They thought me how to stretch. Even now, 3 years in the journey, I stretch every morning. That is why I can bike or swim with no issue. Like Eileen said, moderate physical activity actually helps to overcome PMR symptoms and live life closer to normal.
Hi that is really reassuring thanks it's given me hope- our cycling trip is about 40 miles a day some hills but it sounds like the tough hills are on days 5 and 6 at the end and there is support vehicle for tired cyclists so I may manage it will make a decision in June am on 8mg at m moment and fairly stable now thank goodness -
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