Just wondering what exercise program s people have taken up. Been in he gym on and off for two years with limited success building my quads back up.Don t think the lock down s helped as I have sat around more than normal.
Been a keen golfer but struggle now to hold on to a club.Its effected the last 3 fingers of my left hand. Do quite a bit of wrist and hand exercises but have not got my grip strength back in these three fingers. Any one had this problem.
Any advice would be much appreciated Thanks
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JMJMB
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Like you, I was diagnosed with IBM over 2 years ago. However, with hindsight, It's clear to me now that I'd been coping with it for many years prior, but had simply attributed muscle weakness with 'getting old'! I'm now 62.
I offer the following from a lay persons point of view and based on my own personal experiences.
I've discovered that IBM is highly individual condition. It differs from person to person and there is no definitive pattern of progression. For example, I'm now unable to walk and am wheelchair bound, yet my upper limb are still very strong. I'm aware of others who've been diagnosed for much longer but are still able to walk.
I was initially very keen to explore what exercises are best for me. After seeing several specialist neuromuscular physiotherapists, I've discovered that all the typical exercises I'd done in Yoga, Pilates, the gym, walking swimming etc are all very good. Personally, it wasn't a question of what is the 'best' exercise, but a question of what exercises can I still do, and do so safely. I also learnt to trust my intuition to know the best exercises for me.
I've researched and been given information which all point to the following principles:
- Focus on building and maintaining the unaffected muscles you have.
- Don't over do exercises. Unlike healthy muscle which strengthens when it tears and heals, damaged muscle can't. if your muscles still ache after 24 hours then you're probably overdoing it.
- Little and regular is better than irregular intensive exercise.
- Focus on balance and flexibility as well as strength.
I have a simple yet helpful document about IBM and exercise. I can share it with you by email. I'm not sure if I can upload documents here.
Hi my husband was diagnosed with IBM at the beginning of this year, following a previous misdiagnosis of motor neurone disease. He also has weakness in his left hand and is a keen golfer. I tracked down a golf professional at Burnham Beeches Golf Club, Hertfordshire, who specialises in lessons for anyone with physical problems and is very good. One lesson already and more to come! His website is michaeloconnorgolfacademy.c.... We both do a daily Home exercise program for IBM. You can download the document from the Myositis Association website (myositis.org) it’s part of a presentation by Dr. Helene Alexanderson and Sue Maillard. They also devised a hand exercise program which we do and you will find it on the same website. Hope that is all useful.
Hi, with regard to the type of exercise, I have a small home gym which sorts most of my needs. Recently I acquired an old rowing machine as I thought it would be useful, however I find that it gives a very limited response which is mostly focused on the back. As a result I have converted it into a leg press which has a much better effect on the legs, a bit weird sitting back to front but nobody is likely to see me. Also, don't exercise every day.
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New diagnosed PM
Could I have dermatomyositis?
New looking for advice pls 
