PMR

[Horizon12]

New on this site so may have already written this some where else. Was diagnosed 14/02/18 and on 20 mg pred which seems to be working for the muscle pain. My only concern is that I am extremely tired all the time. I need to get back to work, but just can't cope with this exhaustion. Does any one know how long it lasts.

[Rimmy]

Hello Horizon12

I am sorry to say 'fatigue' is one of the common and most unpleasant parts of PMR and unfortunately the Pred only manages the inflammatory aspects - which are pretty major of course - but the exhaustion hums along regardless. Many if not most people here will attest to how debilitating the fatigue can be and if you don't or can't 'pace' yourself - taking regular rests - then it is often worse. Do a search on 'fatigue' on older posts on this forum and also 'spoon theory' here or online elsewhere and - you will find some really helpful ideas. There are some days (I have PMR/GCA diagnosed a little over a year ago) when I ignore all the best advice and as am 'physical' as I decide to be - but I have to take it easy the next day or else !! Anyway hope you soon find a way that suits you best to manage this horrid aspect of PMR - Others with more expertise than me will be along soon !!

Best wishes to you

Rimmy

[Horizon12 in reply to Rimmy]

Thank-you for your comment's. I will have to speak to my employers and negotiate regular breaks, hopefully they will be reasonable about this.

[Insight329]

Welcome to the community, Horizon12. So sorry that you had to find us, but happy that you did.

How long does it last? Forever (at least for me). Yes, there are days that I feel almost normal, but some degree of fatique is my new normal. (PMR/GCA since May, 2017)

Below are some sites that Rimmy referred to that discusses fatigue.

healthunlocked.com/pmrgcauk...

rarainbow.wordpress.com/201...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Be reminded on those good days not to overdo.

Hope this helps

[Horizon12 in reply to Insight329]

Thank-you will look at these sites.

[Celtic PMRGCAuk volunteer]

Sadly, fatigue goes hand-in-hand with PMR. It can be both a side effect of the steroids and a symptom of the illness. I always feel in awe of those who have to work through their illness especially as rest is so important, particularly in the early days of treatment. It is often found that those who have to work need a slightly higher dose to get/keep the inflammation under control. Some find that taking a lengthy period off work before making a staged return can help in these early days.

[Horizon12 in reply to Celtic]

Been off work for about 6 weeks and now on half pay. Struggling financially already so really need to get back. Thank-you for your comment.

[Celtic PMRGCAuk volunteer in reply to Horizon12]

Is it perhaps the sort of job that would allow you to work from home occasionally? That way, you could fit in some regular rest periods. If not, perhaps your employer will allow you to have regular rest breaks until the fatigue starts to lessen.

[Horizon12 in reply to Celtic]

No I am a staff nurse working for the NHS.

[Celtic PMRGCAuk volunteer in reply to Horizon12]

Aah, that does put a bit of a different slant on it - staff shortages, etc. But, your senior manager should still be able to organise some little breaks for you. Either that, or you go back on a phased return to your normal hours. I understand it’s difficult - my daughter-in-law is registrar. Lots of good luck wishes.

[PMRpro Ambassador]

The fatigue is part of the autoimmune aspect of the PMR - PMR is just the name given to the symptoms of an underlying autoimmune disorder that causes your immune system to attack your body tissues causing inflammation. The pred deals with the inflammation - the rest is up to you to learn to manage by pacing and lifestyle changes I'm afraid.

healthunlocked.com/pmrgcauk......

Adaptations in the workplace may help - but although I worked for years with PMR that wasn't being treated, I was freelance and worked from home, I only had to get to the computer! I would have struggled to commute for any starting time - and before 10am would have be impossible.

[Horizon12 in reply to PMRpro]

Thank-you for your reply. Hoping to go back to work in a couple of weeks, that will be 8 weeks off altogether. Struggling a bit financially .

[PMRpro Ambassador in reply to Horizon12]

It is a problem I appreciate - but you may struggle physically and end up being ill even longer. Have you no other options?

[caterpillar]

I have my own business as a dog walker, so, have no choice but to keep going, or I will have no business left.....

the fatigue is pretty awful...

I have fallen asleep in a doctors waiting room

on the toilet having a wee

at a rather long red traffic light...

I am learning to rest, which has come as a high price to pay for me, as I used to be so active... riding a motorcycle, going away in our camper van... they have all had to take a back seat for the time being, and I feel their loss.....