Nearly two years since diagnosis

[Paula-kent]

In a few weeks time it will be two years since I was diagnosed with PMR. It’s been a tough journey for a number of reasons - not least trying to learn about a condition that seems to be coming increasingly common but knowledge within the

medical community varies considerably.

The whole ‘snakes and ladders’ thing is hard to deal with. You have to really listen to and make friends with your body so you can judge when the time is right to reduce the prednisolone. I’ve got it wrong so many times and had to increase the steroids and start tapering all over again.

If there’s any advice I can give to people who are just beginning their journey it’s:

1. Read all the information you can and seek advice from groups like this

2. Join a local PMRGCA group so you can meet people like you.

3. Find a GP who understands PMR - or is willing to learn. It’s easy to get fobbed off when you’re feeling so Ill but you need to find a little bit of fight and stand your ground.

4. Don’t get too upset if the people around you don’t understand. Unless you’ve has this horrid condition, you can’t know how debilitating it is.

Good luck everyone! X

[Daisyfield]

Snakes and ladders is a great description!

[Baileyw06]

So true!!

[SheffieldJane]

Well said!