IBM

[60jan]

I have a degenerative inflammatory muscle disease called Inclusion Body Myositis or IBM for short. I would be very interested in hearing from anyone else with this condition to hear how they cope with this problem which destroys your muscles

Thank you

[Maureenhall55]

I have necrotising myopathy which is also a form of myositis. Diagnosed in June. On prenisolone, methotrexate and IVIG. Also struggling to adapt as was completely independent less than 5 months ago now totallly dependent ( in wheelchair). The main issue is to keep mentally/emotionally strong which in itself is difficult when the meds mess you up. Other than that it is a case of learning to adapt physically. There are a lot of aids out there to help and it is surprising how quickly you pick up techniques to help you adjust. There are also support groups for myositis on FB well worth joining as so much info is available. Only other advice is make the most of your good days and don't push yourself on bad ones. Good luck

[60jan in reply to Maureenhall55]

Thank you for your reply. As you say I am trying to stay positive but harder some days than others. Need the neurologist to sort out some medication but had a struggle to get an appointment. Are you on your own or have you got help? Luc kily my husband is a great help .

[Maureenhall55 in reply to 60jan]

Yes mine too. He also struggled a bit as he himself is waiting for a hip replacement, but we are muddling through together. Hope you don't have to wait long to start your meds. I was very lucky getting an early diagnosis but others I have met at The Royal London had to wait months for something definitive.

Good luck

[GOGODIKKO]

I think that eating healthy like taking mostly organic food will improve health level.