I've got GCA & have tapered down to 5.5mg & had no problems so far, but I've just moved house 4 days ago & I can't tell you how overwhelmingly exhausted I feel. I have been feeling very tired as I have been going through a divorce & now moved but this is not just feeling tired, this is something else! Could this be my adrenals glands trying to kick in & if so at what point can I ask for a test to see if they are or not? I'm in bed by 8.30/9 as I literally can't stand up & if I sit down I nod off! I've made myself go for a short walk (less than half hour) the last 2 days & I literally come back exhausted. Normally I could walk for an hour with no problems. I'm unpacking but can only do a small amount & then I've had it. This is so frustrating as I'm normally quite an active person but I have never ever felt like this.
Advice please!
Written by
Janeval
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If it is adrenal function that’s the issue (my first thought) it isn’t that they are trying to kick in. It is because they aren’t when you are putting extra stress on the body when life takes a turn, but on day you’ve been fine. You don’t have enough cortisol to keep you going and your symptoms are textbook low cortisol; I remember it very well. Your two options are take a mg or so more until the storm is over or do less. Ideally you do less, but sometimes you just have to get through these kinds of events and up the dose if you really can’t manage. BUT you have to resist the temptation to keep doing that indefinitely if it is just to make life convenient because you don’t want to slow down. House moves don’t impact just on the day and so you may have to inform your doctor that you need to take a bit extra because you can’t cope for the time being.
Testing might not be very useful because at 5.5mg you will still have some suppression and your symptoms tell you so. This is not surprising and most Endocrinologists won’t do a Synacthen test until well under 5mg because they know above that is most likely to show low function. Your dose is still high enough to cause a bit of suppression but too low to move house and deal with a divorce. The only way it is improved is to keep making the body experience low levels of Pred so it makes its own cortisol. Now is obviously not the time for you. However, if you were like this when you were doing nothing at all and all is well, that’s a different matter because it shows anything bigger happening could put you into crisis. Saying that though, I had months of this before mine kicked in and the Endo just said to keep reducing to keep up the challenge on the system. 4mg my function was low but by 1.5mg it was much better and I felt so. I reduced 0.5mg over 8-14 weeks under 5mg.
Thank you for that. I don't really want to increase my Pred but I don't think I will reduce again for at least a few more weeks. I'm barely functioning & I just want to sleep!
Whole raft of information in FAQs re adrenals-and with recent events both physical and personal no wonder they are struggling.
So for now, just slow down, and do your unpacking/sorting out in short spells - it might frustrating, but it’s not going anywhere - right now your health is more important than every bit of furniture and belongings in their place. 😊
Yes I am doing a few boxes at a time & then that's it! I sit down & most times nod off (unheard of for me!) I simply can't do more than I am doing & I'm usually a 'busy, on the go' person but my body & mind are saying ' no', so I'm going with it, frustrating as it is.
It's not giving in as much as learning to deal with how you are. Many of us probably need to say that to ourselves! It took me a while to realise we still need the kid gloves, perhaps even more so at lower doses. You have just gone/going through 2 of the most stressful life experiences. Your body is saying go easy on yourself. Baby steps and all the best in your new home.
It may well be adrenals, but also remember what you have gone through, a divorce and a house move... that's a lot. I think sosomeone without PMR would be feeling tired! Be kind to yourself and think about what you would be saying to a friend in the same position and apply it to yourself.
That's my new motto 'be kind to myself' - I've always put everyone else first & I never treat myself, but now- new house, divorce soon & new place, so it's me first & I have some wonderful friends who have been & are being amazing. When I have my energy back & feel well again I shall hopefully be living a better life- I just need energy & to feel better again.
I agree with the others - that is a massive load on anyone, even much younger and healthy. I'm not suggesting you are old at 65 but you do have a serious systemic illness and have been on long term pred. I wouldn't want to cope with one of those events, each one of the most stressful things we do in a lifetime.
I tend to forget about the GCA when I'm feeling ok but this overwhelming exhaustion has hit me like a ton of bricks- very unpleasant & I suppose that this last year has come tumbling down on me affecting my overall health now. I can't do anything else but be easy on myself as I simply can't do want I want to do.
Sounds like you have the deathly fatigue from your adrenals complaining about being woken up plus your body generally not being happy at all the things that are happening.
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