I am taking part in a research project that is looking at the fatigue we experience with PMR/GCA. As part of it I wear a monitor that counts my steps. They did an analysis of my first results and are now asking me to increase my steps towards a goal, a third more. The thinking behind this is that once PMR has settled we are left with residual muscle weakness and fatigue a lot of it comes from the steroid treatment. A gradual increase in exercise is thought to combat this to some extent. I thought I'd share this with people who are at my stage. Walking on the flat feels pretty good. Pilates is highly recommended too.
I am on 9 mgs of Prednisalone and am way past the stage of being disabled as far as mobility is concerned. I do however feel quite ill, tired and demotivated sometimes. This maybe a simple solution now the better weather is here.
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SheffieldJane
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I found that Pilates certainly improved my muscle weakness, been going on a weekly basis now for about 18months.
The only thing I would caution with the steps regime, is, as you're counting/monitoring the number you do every day, you may find you are over-doing it, and not giving your body sufficient time to recover. Plus being involved in research and led by someone else's agenda, you are not totally in control yourself. That's maybe why you feel a bit low and demotivated at times. Don't let it stress you
Thank you Sheffieldjane for sharing this information, it is very relevant to me at my stage of PMR. I am currently at 3.5mgs a day and no pain but fatigue is my current problem. I have managed 10,000 steps per day through most of my illness but deliberately reduced it to 7500 when I got under 5mg a day as the fatigue was so bad and I thought my adrenals weren't up to speed. I am pleased that walking and managing my allotment are probably helpful but I agree with Dorset lady that we have to be mostly led by our own day to day symptoms. Please do continue to report findings of your project it really does help to make decisions about our own situation. I cannot impress how much you and others have helped me cope with the ups and downs of this crazy illness.
I agree, and at 5mgs I am finding it joyful that I can work in my allotment this year... albeit slowly and gently. Last year was so frustrating as I couldn't do much at all - weeds and pigeons thrived there!
Hi there - my GP said walking was about the only form of exercise that was manageable with PMR as anything else could potentially increase the crippling fatigue and might lead to muscle injuries (I LOVE my GP!). At 7mg the fatigue was so so bad with me I was even struggling with my daily walk but I persevered and just coped with taking a long rest / sleep in the afternoon. Now I'm on 5mg the fatigue seems to be reducing and I'm starting to feel a little better!! I'm still walking every day (around 3 miles most days - about 10500 steps) which I just love and swear this has also helped me stay (reasonably) sane during this horrendous PMR journey. Oh and having the cutest dog to walk me every day is a huge bonus!!!
Interested to read about walking as I know how vital it is. I'm 64 and had PMR 3 yrs, currently on 7mg pred (as I was 1 yr ago). Have done Pilates for years & dog walk 3 x daily. Went on a 'mindfulness' walk this week 3.5 miles @ gentle pace. Felt quite tired following that. Seems important to pace & also to stretch my limits. Mentality the walk gave me confidence to push myself and not underestimate what I can do. I seem to be feeling tired a lot at moment.
This sounds like a significant research project.the conclusions mad, including yours, sound 'on point'.
I've been diagnosed w GCA since 2012, biopsy proven w continually high c reactive protein and normal sed rate. I did the reduction from 100 MG's a day, down to 2 MG's a day.
This new flare brings me up to 5 MG's currently a day.
I found this good blog, as I was reducing. The slow reduction in pred, including, " dead slow, stop" method of reducing has been very helpful and is one of the best, I think. Even overriding some "dimwit" drs ( as Pmrpro aptly describes them. Who refuse to expand their knowledge of GCA.
Fatigue has been a major problem, since the early reduction times.
So glad you're doing this, Sheffield Jane and hope you'll share your results.
Am off of work currently, except for volunteering. Used to be able to walk 15 NYC blocks in my skirt and sneakers, before the onset of GCA.
I don't do that now, obviously. I like the gentle exercise and Pilate's advice you gave. Am in agreement. That is my course of recovery now.Thank you for your wonderful and informative post.
I will keep you all informed about this project. Thank you for your posts, they helped me too. It's a fight back against a disease that makes us want to curl into a ball and pull the blinds down. Again like DSNS it is not a race except against our own stamina. Monitoring steps simply shows that we can improve our personal best. I am considering in investing in a small dog ( with short legs) because I would never let it down. The effect on mood is a wonderful thing, oxygen and vit D in the sunshine.
Sheffield Jane! THankyou I may try Pilates again when my leg ( broken from a slip) has heeled and oh how I'd love a little dog (short legs) but I'm away in Spain a lot and also I don't think I'd be a very good dog owner when it came to walkies! I'm on 8mgs nearly and doing a very dead slow and so far ok. I look forward to hearing your progress good luck
I recommend a miniature dachshund! We've had this breed on and off over the years (interspersed with bull terriers), and they are real characters. Not just lap dogs, despite their size - ours have always loved their walks and would take as much or as little exercise as suited us (and was sensible for them). I've always found having a dog great for motivating me to get out and walk. I've also used a pedometer for some time - before the arrival of pmr, to make sure I did enough exercise. My number of steps has gone down considerably, but it's good to be able to see and assess just how far I'm falling short.
I had just replied that I had just got a miniature Dachshund, and have seen your reply. Having had large dogs before, but not for several years was concerned about having a small 'yappy' one.
However she isnt 'yappy' and has a huge personality and fits in with my lifestyle completely! She loves everyone.
I use my phone with a step-counter - like many my exercise had really decreased with the onset of GCA/PMR so I am building up gradually, and as she is just still a puppy it is working well.
They really are wonderful company! Mine comes everywhere with me, including travels abroad (but thankfully isn't so attached he can't be left for short spells). He always draws a lot of attention, lots of people want to say hello - so not only great for exercise, but also for social contact!
I have just bought a little dachshund, (well 2 months ago) just to motivate me and get me out.
I have had her 2 months now and she has changed my life, given me a reason to get up and be needed again. We walk when I am well 2-3 miles a day and if I have a bad day we have a little walk and she will just cuddle up and keep me company.
She makes me laugh when I am down and has really been a joy.
My husband thought it would be too much for me, but agrees it has certainly helped - he also adores her too.
An qualified exercise instructor devised 'The Benefits of Exercise' specifically for us and you can take a look at them on pmr-gca-northeast.org.uk/we...
Is this part of the ongoing research being done by Keele University
They can develop back problems, but much depends on quality of breeding (not to over-exaggerate the length of body), also handling and no over-feeding. They don't need to be wrapped in cotton wool, but need to be supported properly when held; and there's some evidence to suggest that allowing them to jump and run about within sensible limits (ie, behave like a natural dog) is actually beneficial. The other issue to look out for is hereditary blindness - some carry a gene that causes the onset at various stages. Again, breeding is key, and reputable breeders will not breed from any dogs where there is any risk (and DNA testing is available).
They are very affectionate dogs to their owners, and just love to be with you. Can also be stubborn and independent but are usually strongly motivated by food so are trainable. Great company, especially if you bring them up to be not too clingy so that they can happily be left on their own for short periods. How glad I am I had a dachsie at the point where I developed pmr - I can still manage the exercise and care needed.
When I first was diagnosed withPMR back in May last year I had to give up my yoga in the august as I was struggling. I love my yoga so it was devastating for me. Also had to give up gardening too. Another blow, so got the gardeners in once a fortnight.
But I learned that walking was ok for me and has been throughout PMR, so I guess I'm lucky in one respect.
And walking is so good for you too. Makes you feel better on a cold grey day.
So I can now walk for England!!!
I have followed this site throughout and cannot express enough the support info and help that has got me through this.
I am now down to 8mg, and have been doing the slow reduction as per your
Advice, and so far it's going well. No flares now..
My Dr is onboard with this and Is happy for me to reduce accordingly. Since I mentioned this site to her and all the helpful advice we receive she has been so helpful. I see her about every three months after blood tests.
I have just returned to yoga last week and all went well I'm happy to report.
I was a little stiff after, but this weeks yoga was so much easier to do. Also I am able to get in the garden now and do some planting, which is also good.
I think I am inclined to agree that once PMR has settled we need to start to gradually incorporate gentle exercise, but not pushing ourselves too hard to start with but listen to our bodies and rest when appropriate.
Over time I find I am not so fatigued as I used to be a even a few months ago. And can do more and more gradually over the weeks and months. But I have always listened to my body and this site.
Let us n
Know us how the research goes it will be interesting to see the results.
Good luck and yes now better weather is here be good to get out n about.
Hi SheffieldJa the pain in my legs and knees is awful somedays, I have a beagle who needs loads of exercise, somedays it's hard going to do 2to3hrs walking with him, but keep going at the end I find all the swelling and pain have gone in my legs and knees, so do feel that exercise does help xxx
It will hopefully result in some support for the recommendations in both PMR and GCA management guidelines that patients should be given personalised exercise programmes. But given how much notice most doctors take of them I don't hold out much hope!!
The cost of these step counters is prohibitive too, they are about £50.00. I wonder if they'll let me keep mine, I am doing it for their data. Fat chance, I know.
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