Myositis UK

Hello and here’s my very short story.

So today I am in a bed in the local DGH with IV steroids for 3 days. It’s really scary. I’m a healthy (I thought) 34 year old male with wife, 2 year old girl and a baby boy on the way in 4 months.

None of our family or friends have really lived with any form of chronic condition and the Consultant thinks I had an acute attack. I could barely walk I was so stiff. Couldn’t get up unaided then what sent me to doctors for second time in 2 days (after literally never attending before) was my arms getting seized.

Has anyone else ever had acute episode. What’s recovery like. I’m feeling better but I worry if in 5 years time I won’t be able to lift my girl etc.

Plus a lot of googling last night whilst on a very depressing ward seemed to indicate links with some pretty scary stuff ifbthe condition isn’t scary enough to start!

I’ve been lucky healthy. Not worried much about weight, what I eat of proper regular exercise. Bits here and there some team sports etc. I guess I’ll have to make some changes but will I still be able to play hockey etc?

I think I’m just looking for some reassurance people live with the condition well.

Thanks

Jonathon

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Hi, we’re not far along with recovery but I wanted to share that this just happened to my mum at Christmas. We’d never heard of the condition previously. She is finally out of hospital and at home. It has been an acute attack I’m sure. As she is in a wheelchair for the moment. She went onto IV steroids in hospital after a reduction at home led her to crash. Being unstable with dysphagia. Everyone seems to be very different with DM; on different drugs, with different reactions, with different people and differing doctors opinions and specialists. It’s hard for a rare condition like DM to have enough statistics I guess. 1 in a 100,000 I believe. For my mum it has been the tiredness that has been devastating. If it was just not walking, we could cope but tiredness takes everything from her. She has lost 3 stone in muscle and this will take months for her to build up again. From what I read, many people seem to go into recovery well and you have age on your side so I wish you the best of luck.

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Thank you for your reply. I’m feeling better today. I seem to have phisically got quite a lot of my strength back and don’t seem to have done much muscle damage. Although I am noticing the tiredness, went for a short walk and the. Get really tired towards the end and it’s only 10min!

I hope you Mum gets better and responds to the different treatments well.

I’m hopeful they will release me today so I can get home. The hardest part will be taking it easy!

Thanks

Jonathon

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Hi Jonathon. I was diagnosed with DM/PM at 28. By the time i was hospitalised i could barely swallow or walk. IV steroids helped and it took a year of gentle exercise and steroids to get back to a bit of normal. Take your time dont rush it. I was off steroids 3yrs after diagnosis and had a baby. 4 years now and the symptoms are back . I now know more and can look after myself better so am not as worried. I wouldnt rely on google...so stressful. Moreover IV steroids make you feel like you are on top of the world but really your muscles aren't. I wish you luck and pray you regain your muscle strength soon.

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Thank you. I just tried a jog up the stairs at the hospital having been out for a short walk. Gosh, so tiring! Got back to my bed and needed a nap!

Good to hear you went steroid free for a while, I am hopeful with some regular exercise planning etc I can get to normal quite quickly.

My main concern is not to over do things and relapse.

The scary thing I found was how quickly things happened. Sunday last week slight ache, Monday sore legs, tuesday still stiff, weds thought I was better. Thursday wake up basically immobile and very weak arms. 3 days later I’m feeling on the mend butbthe IV steroids do create a bit of mood swings. From I’ll be an Olympic snowboard champ in time for next Olympics to I won’t be able to carry my baby boy in 6 months.

Ah well just hopefully out of here today, get a sensible programme of exercise and rest set up and should be able to manage ok.

Thank you for advice.

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