tiredness

[kingharold11]

had blood tests all came back normal saw my rheumy he is pleased so why do I feel so bone weary tired most of the time. I do not have any pain anywhere I,m just tired.

[polkadotcom]

Fatigue often accompanies autoimmune conditions and apart from resting (and not reducing the Pred dose too quickly) there isn't much we can do about it.

However, there are some checks you can make to be sure it isn't aggravated by other PMR add-ons. Have you had your thyroid checked? Your vitamin D levels? and could you be anaemic? All these can cause energy levels to drop.

It might be an idea to see your GP for a check.

[SheffieldJane]

The bone weary exhaustion is a complete mystery isn't it?

I am participating in a study on the very subject overseen by Dr Mackie ( Rheumatologist) in Leeds along with many others. Let's hope they get to the bottom of it and find some remedy. I must say I'm giving in to it more and more these days, sleeping my life away between short bursts of activity.

[markbenjamin57 in reply to SheffieldJane]

All about pacing ourselves mentally and physically Sheffield Jane..? (easier for some of us than others!)

[markbenjamin57]

Hello kingharold11

I think the short answer is: 'fatigue is part and parcel of PMR, even if you have no other symptoms and the bloods appear ok' - that, is unless there is anything else that's relevant in your health equation. And by 'bone weary tired' I guess you mean the 'deathly', continuous type (mentally and physically) which no amount of rest or sleep can fix? This is my and, it seems, many others' experience too. Add-in the rather hazardous process of getting Pred reductions 'right' (or not, which is well-known to cause terrible fatigue if to great / too fast) and / or a few other factors like stress, over-activity, the cold winter weather etc, and Bingo: a recipe for the type of fatigue you describe.

If it helps: at the Bristol PMRGCA Roadshow last week, Prof Kirwan asked the audience of 50 or so 'what is the worst / most nasty symptom of PMR?'. In a show of hands, the majority reported 'fatigue'...

My amateur analogy is that, with PMR, the body's 'energy battery' is only 50% full at best, is much more easily depleted than usually, and takes longer to re-charge itself. There are quite a few posts here about the need to 'pace yourself' with PMR / GCA - both mentally and physically. One such is the 'Spoons' method where you monitor your daily / weekly activities and plan for / allow yourself to catch up energy-wise if you have a lot going on (or more than usual), and perhaps learn to say 'No' to yourself and others around extra demands. With PMR, you really do have to re-assess your life and priorities until or unless it goes into remission - and even then, there are no guarantees. Learning to cope with the symptoms of PMR is as important as treating them... been there and got the T shirt!

There are also a couple of references here in the 'Fatigue with PMR' posts to guidelines on how to manage it - published by regional Health Authorities in the UK, I think. Maybe someone else here can signpost you to them..?

The experts here will also tell you that (q) 'PMR thrives on Stress'. I can vouch for that...

So, my advice (from experience)? 'Roll with' the fatigue and be kind to yourself in the meantime. PMR really is a debilitating, chronic health condition, and confusing when most of us look fine in the mirror - or to others on the surface!

Hope this helps, try to keep smiling on the journey

MB

[DorsetLady PMRGCAuk volunteer]

Hi,

You posted a little while ago, think heading was 'osteoporosis', my response highlighted the fact of lazy adrenal glands needing to wake up. I still think you are in that situation.

Just to re-iterate I felt really wiped out for about a year during the drop from 6mg to 3mg, all done very slowly time-wise and dose-wise. No other symptoms or pain though.

Think you may be suffering same, so it is really a matter of having to accept it, and trying to manage it as best you can. It will pass in time. In the meanwhile you could always ask for Synacthen test to check that your adrenal glands are capable of working.

[PMRpro Ambassador]

As DL says - if you are below 7mg (and do I remember your post a bit back saying you are?) it could well be adrenal insufficiency. That causes bone numbing fatigue that makes PMR fatigue look a doddle!

I doubt whatever blood tests a rheumy did it included a synacthen test!