Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Stop the world

Nov 29, 2016 4:15 AM

Still trying to wrap my head around the CPS diagnosis, and yesterday it got bumped up to Fibromyalgia. I haven't even learnt to pronounce it properly and I can't spell it yet. But the world is still spinning. Everyone's going about their business like nothing's changed. And it hasn't, not for them. I feel like yelling it in everybody's ear as they walk past me: FIBROMYALGIA!!! Or maybe take a couple of weeks to hide in bed while I get used to the pain, but nobody likes 'lazy people'

Nov 29, 2016 5:15 AM

Oh nixle I'm so sorry that you've had this dx. It's going to take time to wrap your head around it plus some research to try and understand. It is a life changing dx but as you said the world is carrying on around you and you will find there's going to people who don't understand and give you well meaning but misplaced advice which you will now get probably for the rest of your life.
You are going to go thro many different emotions as you try to get your head around it. Don't try to repress and hide your feelings because they'll only manifest themselves in different ways including increasing your pain.
You need to grieve the life you had before and become used to the new life ahead of you.
Look for the joys and blessings in each day to help you thro. There are going to be bad days ahead and there will be good days ahead.
I'm sorry I can't say life is going to be all rosy from now on but you have a dx and can start to move forward finding the best way for you.


Nov 29, 2016 5:55 AM

Step one ... You are here! Count all your successes! Let stuff go, learn to pace yourself and foremost focus on restorative sleep ... I'm still working on all those ... Vent here when you need to. Having all these great people here that get you is such a blessing and keep your sense of humour!

Nov 29, 2016 8:04 AM

I remember that feeling when I got my diagnosis. It was like I somehow thought my world would change. That people would now see me.

But I was still in pain, lost in an invisible illness that no one understood. At least I now had a name of that illness. And really - while it seems nothing changed that name changed everything. I could research what, why, where and why. I can connect with others who are fighting their own battle, and I can now hold my head high. Regardless of whether others believe it.. I knew from that moment on that I wasn't imagining this. It was real. It had a name.

Nov 29, 2016 1:23 PM

⚘⚘⚘Sending u much good karma sweetheart πŸ€— give urself time to absorb ur diagnosis... and to do some research 😚 we are here for u hunni 😚

Ready to start relieving your pain?

Join Community