Inclusion Body Myositis

[Harley463]

I was diagnosed with Inclusion Body Myositis in 2013. The effects have gradually worsened and I now have difficulty in walking properly and with balance associated with walking, standing up etc. I do a daily routine of exercises (40 minutes) not only for my legs but also for arms and body to try and ward off any other related or non-related effects and to keep as much as I can supple and working. I am 77 years old and live by myself - still managing to cope.

[Lisalou19]

Nice to read you can cope whilst being on your own . Gentle exercise not only helps the Myositis but also your mental state can be uplifted too.

I hope you have a productive day today xx

[hopegalore20]

Hi Harley463, it sounds as though yiu greet each day with a strong will-power to not let the Myositis take over your entire life.

Ensuring you undertake your exercise program and remain hopeful.

You have a good mind set, long may it continue.

Take Care of yourself.

[drummer-boy]

You have a positive attitude and that makes all the difference. !

Good luck and keep exercising.

[drummer-boy]

Hi,

I also suffer from IBM and just wanted to know whether you, like me also suffer from extreme tiredness and pain.?

[Harley463]

Hi, Fortunately, no pain unless I fall over! Gradual weakening of the leg muscles which are used/control standing up and walking properly. I can't get up off the floor if I do go over. My daily exercises include 20 minutes on one of those electronic feet stimulators and whilst I am sitting there I do massage arms and hands/fingers - also some upper leg massage and exercises on bending over, neck mobility plus more. I finish with 30 times each leg on an exercise stretch elastic band (do that twice) and finally 10 times standing and sitting from the bed. All this, hopefully to ward off other things as I realise the actual muscles won't come back. Tiredness is a bore and I frequently drop off which watching TV. I try to do this mid-afternoon if possible so as to avoid staying awake too long at night!

[Anne88]

Great to see you feel so positive. I have DM and I find it very hard sometimes but keeping positive also helps me.

All the best, x

[ADP2010]

Harley463 good to see that you do as much exercise. IBM diagnosed 2010 . Have always gone to gym - these days Monday/Wednesday/Friday. Can only use 3 bits of equipment. One is bench when back lifts up. Someone lifts back to first angle from flat. Then slide down and lay back. Use a 5kg weight held by both hands up and over my head. This is all about strengthening my back. Do similar exercise with 2kg weight. Ask someone to then sit me up then continue exercise with 2kg - really all about arm movement. Then with a bit of leverage from locked leg wiggle to top of angled bench and can get high enough to lock knees to stand up.

My visit includes Abductor machine and Recumbent bike (where someone puts my feet into pedal clips) - these are all about moving my limbs in a way that they normally do not.

Hope this helps

[Aka123]

Hi Harley, my dad is 75 next year and could relate well to the symptoms you have as he has inclusion body myosotis. Are you still using this forum? Thanks Anna

[wasabassplayer in reply to Aka123]

I also have inclusion body myositis - and for good (not) measure I had a spine stroke in lockdown #1, March 2020. Complete game changer.