Frightening Fatigue

[Lyra42]

Thank you so much for this forum and for all the friendly advice so far!

I’ve read all the helpful fatigue posts that you’ve pointed me to but I’m beginning to feel really frightened by the extreme fatigue that I’m experiencing. A few months ago I was a fit and active 54 year old working full time. PMR symptoms hit suddenly at end of March and diagnosed/started on Pred on 26 May. 15mg for 11 days and then 20mg since 6 June which has been very effective in getting rid of the pain - virtually no pain now and reduced to 19mg today. (After a little tussle, I managed to get doctor to agree to reduction plan of 1mg/week)

However the fatigue is just getting worse. I am sleeping 10 hours a night plus 2 hours in afternoon. I have to lie down after doing the smallest activity - having a shower, using the computer for an hour, making myself a sandwich. I can only manage to do 1-2 hours work every other day and then I’m wiped out. I have agreed to a phased return of 7 hours/week increasing as symptoms allow for next month.

I understand that fatigue is part and parcel of the autoimmune condition and will continue for some time but does it gradually improve with time? I’m desperately hoping that it won’t be this bad for the whole 2, 3, 4... years before the PMR burns out.....?

I realize that it depends on individual but could do with some good news stories from others who’ve experienced similar levels of extreme fatigue. Thanks

[Nextoneplease]

Hi Lyra42 😊

I’m sorry you’re having such a tough time. I was diagnosed in March last year and like you, it took a few weeks to get the pain under control. But for me also, by far the most difficult symptom has been fatigue. I now plan practically everything I do, including online shops, washing my hair etc, as well as ‘bigger’ things like going out or looking after the grandchildren (which completely wipes me out).

As you know, your body is dealing with an autoimmune disease and boy, don’t we know it!! However, I can reassure you that I am slightly less fatigued now than I was last year, and (usually) am getting better at pacing myself. So I think you can be optimistic about the future 😊

Having said that, I’d say you are very fatigued, from your description, and I wonder whether you’ve reported this to your doctor? Some blood tests might be useful, to show if anything else is going on, eg anaemia.

All the best to you, take care xx

[Lyra42 in reply to Nextoneplease]

Thank you so much - I needed to hear that (needed a bit of hope 😀!) I’ll contact the doctor to ask for another blood test although the full spectrum test two weeks before diagnosis only showed elevated CRP and liver function. Thanks again

[DorsetLady PMRGCAuk volunteer]

Please re-read this link -

rarainbow.wordpress.com/201...

It really does explain the affects fatigue has on chronic illness patients - and it is difficult early days to get your head around it, but it’s a must really.

Have to say not sure reducing 1mg a week will be advantageous- I think the body needs to stay at each dose long enough to make sure all is okay….and many have found even from 20mg they can only reduce 1mg a month.

As for returning to work, if you still feel as you, that realty not a good idea…

But do agree, perhaps other causes of fatigue should be checked with your GP.

[piglette]

It is a shock being diagnosed with PMR, particularly if we have been used to leading an active life. We need to recognise that we are ill and that the PMR will always win if we do not recognise that. The rule of thumb is rest, rest, rest.

[PMRpro Ambassador]

Have you seen this post?

healthunlocked.com/pmrgcauk......

All the links are important in getting a handle on your fatigue. We are all a bit different - on Monday and again today I have driven for 6 to 7 hours to the airport and back. That doesn't bother me much at all - but walking around town doing things that must be done will flatten me. It is about identifying what is your trigger for fatigue - and adjusting your lifestyle to account for it.

However - has your GP checked everything - has he done a full blood count, red cells, white cells and differential count, haemoglobin and other "stuff" like thyroid tests. Mild anaemia is common in autoimmune disorders - that can flatten you. Thyroid problems too. PMR isn't a simple disorder with one cause - there are several potential underlying causes that must be ruled out.

[Lyra42 in reply to PMRpro]

Thank you, that’s really helpful. I’ll ask the doctor for another blood test

[MiloCollie]

All good advice above for you but yes the fatigue does get easier in general as you reduce pred carefully. Just pace yourself and spread things out. Only do what you NEED to do. Good luck.

[PMRpro Ambassador in reply to MiloCollie]

I think even that needs to be qualified: do what you NEED to do but reassess WHAT you NEED to do. If leaving a bit of dust means you can do something nice that you WANT to do - leave the dust!!!

[Lyra42 in reply to PMRpro]

That’s ok - I don’t do dusting or non-essential housework - decided years ago that it is a total waste of time living with my messy family! 🤣 (Fortunately after a few weeks his own mess starts annoying my husband so he blitzes the place! Good tactic eh? 😉)

[PMRpro Ambassador in reply to Lyra42]

Like it! Didn't work with mine - he didn't lift a finger even when he was able! And he was the one who made his room impossible to clean easily and objected to being ask to move out of it for half an hour! Now I have a cleaner for an hour a week - the difference in a tiny flat with me on my own is fantastic!!!!