How should I feel?

[NewPMR]

I am newly diagnosed with PMR. Although my symptoms have cleared up, I am easily tired out by most activities and feel the need to rest. Is this normal?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

A bit more information might help us to help you… age, gender [can make a difference]. when diagnosed, what dose started in, what dose on now , what activities are you talking about.

Just because you are on medication doesn’t mean your illness is cured…so you need to manage it by amending lifestyle etc..

Maybe have a read through this - and then come back with some more info please-

healthunlocked.com/pmrgcauk...

[NewPMR in reply to DorsetLady]

Thank you for your reply. I will read the attached links and hopefully gain a better understanding of this mystery illness.

[DorsetLady PMRGCAuk volunteer in reply to NewPMR]

Our aim is to make it less of a mystery -not sure it always works😂🤣

[PMRpro Ambassador in reply to DorsetLady]

We can only try!

[PMRpro Ambassador]

Hi and welcome.

Normal no - but usual, afraid so. PMR isn;t the actual illness, it is the name given to a set of symptoms that can be caused by several things and in our case the real disease is an autoimmune disorder. The pred only combats the inflammation that causes the pain and stiffness symptoms and so relieves them. The fatigue and malaise are due to the underlying autoimmune disorder that creates the inflammation and that isn't affected by the pred at all, it continues in the background and makes you feel as if you have ongoing constant flu.

DorsetLady will be along later with her welcome post and it has several links in it, one about fatigue and pacing to mitigate the effects. Do read it all, it explains a lot of what you are feeling.

[krillemy in reply to PMRpro]

Yes - even 5 years in I still need to be reminded.

"The fatigue and malaise are due to the underlying autoimmune disorder that creates the inflammation and that isn't affected by the pred at all, it continues in the background and makes you feel as if you have ongoing constant flu."

Thank you PMRPro....

[NewPMR in reply to PMRpro]

Thank you for your reply

[piglette]

The PMR mantra rest, rest, rest. PMR is life changing so don’t overdo things. I don’t know if you are interested in gardening but there is a Gardening Group that has been set up for people with PMR and GCA which has some wonderful photos. facebook.com/groups/6288051...

[SheffieldJane]

It’s a good description of well managed PMR. Keep it up. See FAQs for advice on-going.

[Linlang]

so sorry. Now off pred and fine I so remember feeling as you do 6 yrs ago. It will change..