Merry Christmas everyone

[Christi2]

I'm feeling exhausted all the time don't have energy to do anything ,even find it difficult to walk any distance also feel as if my doctor doesn't understand which is depressing me .is this normal with gca .

[SheffieldJane]

Very normal Christi most of us get this symptom and only we really understand what it is like. Persist with gentle walking. It seems to make me feel better even though every instinct tells me to lie down. I think doctors don’t seize on this symptom because they have nothing to offer. What is your dose of Pred at the moment?

[Christi2 in reply to SheffieldJane]

I'm on 15 mg at the moment

[SheffieldJane in reply to Christi2]

So you have travelled down quite rapidly from a GCA dose?

What was said about your passing out?

Do you have other conditions that complicate your symptom picture?

Your back of the head and neck pain sounds like my Cervical Spondylosis and your low back pain like my bone degeneration at the base of my spine - the dreaded wear and tear. Non GCA/ PMR pains do respond to pain killers.

Are you being quite strict about pacing your activities and having frequent rests, also at least one daytime nap.

I find that I can’t really trust my immediate body signals, so I either over do things or do not discipline myself enough to lie down when I don’t feel like it. A routine helps me to manage myself with this disease.

[PMRpro Ambassador]

Absolutely "normal" - usual is a better word. The fatigue is part of the underlying autoimmune disorder that causes the GCA. It isn't affected by the pred, it must be managed by pacing and resting.

healthunlocked.com/pmrgcauk......

Read this link and all the links in it - it may help you to understand. And maybe even your doctor - I'm rather taken aback that a a doctor doesn't understand the fatigue of autoimmune illness at all. GCA is a severe systemic illness - a bit like having flu all the time. The pred just manages the inflammation - not the illness itself.

[DorsetLady PMRGCAuk volunteer]

Hi Christi2,

Absolutely normal! On all counts. As others have said, you have a serious illness which takes some looking after. I would guess your GP, like many, thinks once you’re on the Pred you should be okay, unfortunately it’s not like that.

Have a read of attached it may help you understand your illness a little better, and as PMRPro has said you need to learn to pace yourself - that’s one of the most important things with our illnesses. healthunlocked.com/pmrgcauk...