Energy levels

[olive2709]

GCA developed almost 10 weeks ago get up feeling good don't push myself but by lunch wiped out on 30mg pred going down by 5mg every 4weeks till I get to 20 then 10% every 4 weeks How do I get energy levels up

[PMRpro Ambassador]

By RESTING! The pred has not altered anything about the underlying cause of the GCA, an autoimmune disorder, it is still there in the background while the pred manages the symptoms. All autoimmune disorders tend to be associated with fatigue and it can only be managed by pacing yourself and resting when you need to. If you rest BEFORE you get exhausted you will find you recover faster and, in the end, achieve more. You have a serious and chronic illness, even if you can't see it.

If you have something special you want to do - rest beforehand and make sure you have a get out clause and rescue plan. There is nothing worse than hitting the fatigue brick wall somewhere where you can't at least sit down and even worse when you are faced with (for example) walking or getting home on public transport. Don't plan to do things on two consecutive days and don't plant to do something you know will be too much for you.

There is a blog called "Despite Lupus" written by Sara Gorman,a young woman in the USA who has lupus. She rests every afternoon, a fixed time of 2 hours sleep, which allows her to manage an otherwise relatively normal life with 2 children and a business, run from home. Without that sleep she is useless in the evening and if it is compromised in any way for more than one day (when travelling for example, or the childcare set up fails) she knows she is at risk of a flare. I recommend you google it and read it - because she has lessons in there for anyone with a chronic autoimmune illness as we do.

[Richard2012]

Hello Olive,

I recognise what you write - very familiar to me. GCA got me some 20 months ago and I started on 60 mg of pred. What it has taken me a lot to learn is that I must not push myself. Having been active and hands-on all my life it has been and still is tempting to do too much. When I succumb and do to much I pay the price for a while after, by which I mean that I feel unwell and have an increased headache for a few days or weeks depending upon how much I have pushed myself. I think only you can decide how far to push yourself as only you know how you feel. The adjustment to a lower level of activity is difficult, and I don't think there is a quick solution. Your best help I believe will be to read Kate Gilbert's book available through PMRGCAuk or AMAZON in Kindle format.

Richard

[olive2709 in reply to Richard2012]

I guess it's denial ,don't want to accept my physical limitations before I retired last year I ran my own diner I had been a chef for over 30years Kate's book is teaching me a lot.What brought it home was looking on line to book our flight to Malta in April and realised that parts of the island we like to spend time are off the beaten track don't see many people never mind cars or buses .Think I better concentrate on Christmas and look at flights in the new year

Olive

[Richard2012]

Hello Olive,

I can understand how you feel. I used to love distance walking, 12miles plus not unusual including hills and mountains. Now I am walking up to about six miles, and have made mainly steady progress. On occasion I have pushed myself too far and the GCA has let me know about it for a few weeks. I'm frustrated at the slow progress, that is, until I think about the real progress I have made. I'm also grateful that I could have been far more seriously affected with loss of vision or impaired vision. As it was my experience of double vision alerted my doctor and the Pred ensured that I did no go blind.

I can now manage slopes that would have been impossible for me six months ago and I look forward to being able to do the walks that I used to do. What I intend, is to resist the temptation of seriously overdoing things so that I have to revert to a higher dose of Pred again. You have had a very hands-on career and I have also. It is so tempting to overdo things - just do a little more when you have finished a task. Resisting that temptation is my hardest struggle.

I'm sure you will get there, to Malta again - maybe next year. I wish you all the very best.

Richard