I'm new here and pleased to join you. I was diagnosed with IBM 2017 and it has been a very long journey. I began showing symptoms, falling etc, about 8 years ago and after numerous tests and finally a biopsy I received the diagnosis.
I have struggled with depression and still get very frustrated , as I am gradually losing the use of my hands and fingers. Especially frustrating as I was once was a church organist and dance band keyboard player, although I can just manage to sill play after a fashion!
I see a consultant in Newcastle annually which involves a 90 mile round trip journey but apart from that it is a very lonely illness as our GP's know nothing about it and , unfortunately, dont seem to want to know.
I have also found help in Occupational Therapy and to an limited extent in Physiotherapy, but that is all.
Still I am grateful that I have reached the age of 76 when it has really taken me over.
Sorry to hear you have had such a difficult time. Must be so frustrating for you to struggle with your hands when you are used to playing instruments.
Have you joined Myositis UK?
If not email the office at msg@myositis.org.uk membership is free and we have the annual conference on the 23rd June, which is also free to members and one partner/carer. There is a separate breakout room for IBM with experts in IBM. You would also have the opportunity to meet others with IBM, who will understand how you feel.
I was diagnosed with IBM in 2008, but had symptoms long before that. It is a difficult disease, especially when you see your friends doing all the things you used to do. Really changes retirement plans. Still, I keep going and doing what I can. Have stopped cruises since I can no longer do the shore excursions. I still go on trips where I know I can get around with my rollator. I go to Florida for the winter. I am very short of breath and can't do long walks but do walk when weather is good. I have a recumbent bike and use that. I take creatine after exercise. Have tried other supplements but haven't really found anything that helps. Tried to get into clinical trials in U.S., but no luck. No trials in Canada.
I try to keep a positive attitude. Spring is coming and will enjoy the nice, sunny days on my deck. Do a lot of reading.
Hopefully, a treatment will happen. Age is a problem for many of us.
I'm reading your post a bit late but still find it interesting. I am just 77 and was diagnosed about 7 years ago. I had an exercise tutor some time before I was diagnosed and have kept up exercising every since. Also attended a gym regularly to keep things going but that has dropped off now. I now do about 50 minutes dedicated exercise each day which is mostly sitting down. I have 20 minutes on a foot circulation booster during which time I sit and do other body exercises.; This includes massaging my arms, hand and legs which I do in the hope of warding off anything else to do with circulation. Massaging my hands seems to be very useful.
I'm now finding that disappearing muscles on my legs and feet seems to affect my balance and I have to be very careful to get it right before moving off. It's but like walking on stilts because I can't support my weight on one leg which means it has to be kept stiff when weight-bearing!
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