Just diagnosed : Newly diagnosed at a young age... - Myositis UK

Myositis UK

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Just diagnosed

thehannaah profile image
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Newly diagnosed at a young age, feeling extremely overwhelmed and uncertain about the future. Currently still on steroids but does anyone have any tips which will make dealing with this any easier ?

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thehannaah
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Mwiki profile image
Mwiki

Hi so sorry you are going through this. Can I ask what you've been diagnosed with? I just wanted to tell you a little about my own experience with PM. I was diagnosed at 29 and my case was really bad, didn't respond to meds except for super high doses of pred! Stayed in hospital for 4 months followed and 6 months of psysio to get me on my feet again. Times were very bleak and I could not see a future, but there is a happy ending.... I eventually went back to work and am a mum to a 15year old and 12 year old! I have been able to live a relatively normal life up to now.

My PM is back after 20 years and back on pred. Although am sad its back, I feel very positive that I will get through it. Moral of the story is there is a light at the end of the tunnel. You can beat this and be OK. X

thehannaah profile image
thehannaah in reply to Mwiki

Hi thank you for your reply

thehannaah profile image
thehannaah in reply to Mwiki

I’ve been diagnosed with PM at 19. I started on 40mg of Pred after being in hospital for 2 weeks. I’m currently tapering off and am on 15mg. I still feel some symptoms and find it hard to sleep so am on sleeping pills right now. Pred has really helped in terms of muscle pain, aches, stiffness and soreness so I am happy for that. I found it really hard to come to terms with the fact that I have a long-term illness. It was really messing with my mental health and I felt I was slipping into a dark place.

Mwiki profile image
Mwiki in reply to thehannaah

It's hard I know especially for one so young. It's very good that you got diagnosed early and put on medication. The pred will mess with your moods and sleep patterns but it's the best thing to get you better. You will bounce back and you can lead a normal life. 😊

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