Any suggestions for help with Inclusion Body Myositis

[60jan]

I was diagnosed with Inclusion Body Myositis last year and looking back this condition has been developing for the last 10 years. I am 70 this year and I'm extremely fortunate to live with my husband who is so supportive and helpful. I would be really interested to hear from other sufferers to see if they have discovered anything that helps or ways to improve quality of life as there seems to be very little info or support available .

Thank you

[Philip]

Hi, I don’t know what it is or what it does, I’d just like to wish you both all the very best and you find the answers you seek. Xx

[60jan in reply to Philip]

Thank you for your kind wishes. IBM is a degenerative inflammatory muscle disease which causes weakness in legs and hands and I have to be so careful that I don't fall. I can't walk far and I can't rise from a chair unaided or climb stairs/steps.

[Philip in reply to 60jan]

That horrendous for you, please keep fighting.

Philip x

[MAS_Nurse]

Hello 60jan

Thanks for your post. I am so glad you are fortunate to have some support at home from your husband with inclusion body myositis (IBM).

This is a supportive community , so our members may have more information and experience of this condition.

You can find more information at nhs.uk/conditions/myositis

There is a forum on health unlocked called myositis uk, that may also offer you more information.

Do take care and keep in touch

[60jan in reply to MAS_Nurse]

Thank you- have registered with Myositis UK but as yet have had no contact with them