Myostitis

[Eddie1969]

Been diagnosed with myostitis today. Had myocarditis twice 2019 and 2021 and had rheumatology appt and blood taken, and now need ct, mri and emg. Anyone got any advice re myostitis.

[Sunnie2day]

Myositis is a somewhat rare condition which can be caused/triggered by an injury, infection, and/or an underlying autoimmune condition(s). The condition can cause or exacerbate heart conditions.

It would appear 'they' suspect your myositis has a rheumatoid autoimmune connection - you've been referred to rheumatology and are in the queue for the standard investigations to determine the type of myositis you have so they can formulate a treatment regime for you.

If you do a search for information, be sure to only click credible sources of information like the NHS and USA source like The Mayo Clinic and Johns Hopkins.

HealthUnlocked does list some autoimmune forums including this one specific to myositis:

healthunlocked.com/myositis...

Please keep us posted as to how you get on.

[Eddie1969 in reply to Sunnie2day]

Hi sunnie2day

Thank you for your reply. I am going to look at the forum link you sent.

Thanks for the advice, on only checking out credible source. I will keep my posts up to date on how I get on. Thanks again

[BL567]

Hello Eddie1969,

I wanted to check how you were faring? I have just had my second bout of myocarditis.

[Eddie1969 in reply to BL567]

Hi BL567,

Sorry for just replying, only saw this yesterday

Yeah I have been ok since have myocarditis in 2021 but have been diagnosed with necrotising myosotis. Haven’t gone back to exercising like I did before my myocarditis but I am keeping fit with walking and have invested in a really good treadmill so I am able to use it as much as possible. I get odd pains in my left side now and again, and I am no way as fit as I was before and have other symptoms from my myosotis.

However I am fine and just getting on with things as normal now. My rheumatologist is pretty good and I am under review being seen every 6 to 8 month and have regular echograms. I am no longer taking medication for myocarditis. And nothing at the moment thankfully for myosotis.

I am very aware of how I feel and would love to run again but every time I start running and get back into it I seem to set things off again. And it took me so long to feel ok after both my myocarditis episodes. I have been back to A&E a couple of time with a tight feeling in my chest due to my previous experiences just to be on the safe side.

But I am fine. Thank you for asking and I hope you feel better soon. Take it easy and don’t do to much too soon. It does take time. Take care

[Eddie1969 in reply to BL567]

Hi, I have replied to you earlier message but

I was just seeing you replies and noticed the number of people with pins and needles in there legs. I put this down to my myostitis, but you have got me thinking now that maybe it is connected to myocarditis. The pins and needles feeling is there most days. Is this the same for you?

How are you doing, i hope you are feeling a bit better.

Take care

[BL567]

Hi Eddie - thank you for the responses. I’m not sure if pins and needles are a big thing with myocarditis. I think people (including myself) over examine every possible niggle when they’re sick. That being said - it could be logical to get pins and needles due to reduced blood flow to extremities.

Hope you’re doing okay.

[BL567 in reply to BL567]

And to answer your question - I haven’t got pins and needles at all on my second bout. Only lightheaded when I stand up and sit down too fast

[Eddie1969 in reply to BL567]

Thanks for getting back to me. Take care