New experience of fatigue

[Mary63]

I have had a really easy ride so far with PMR. Diagnosed in mid January. Put on 20mg prednisolone with fantastic affect on pain within 8 hours or so. Have sometimes been fatigued since then, but nothing too much. Though I have tried to pace myself...certainly not working as hard as I used to, and much less sport. About 3 weeks ago had reduced to 10mg (20mg, 15mg, 12.5mg, 11mg, 10mg,) all without any problem. Big party for my disabled daughter 11 days ago which wiped me out. Rested rested rested and still felt dreadfully tired for another week. No pain apart from slight stiffness in neck in the mornings. So I put myself back up to 11mg 4 days ago. No difference. I have had no bloods taken since diagnosis. Would it be worth requesting them? Any suggestions, apart from the obvious one of keeping on resting?

[PMRpro Ambassador]

It isn't uncommon for really overdoing it to result in needing a long period of recuperation. The pred really doesn't make much difference to the fatigue - it is part of the autoimmune disorder and to some extent resembles the fatigue found in chronic fatigue syndrome. Pred doesn't have any effect on the autoimmune bit of PMR.

I think really you will have to be patient - I know it is hard, especially when it is probably due to doing such a nice thing for your disabled daughter. But it is a characteristic of PMR - if you overstep the limits it sets for you it can take a lot of getting over. Your muscles remain intolerant of exercise, they can't tell you you are doing too much and they take much longer to recover afterwards.

I do hope it improves very soon.

[Mary63 in reply to PMRpro]

Thank you

[markbenjamin57]

Hello Mary

I can well relate!

It sounds like you've 'hit the wall' having relatively easily and quickly reduced the preds so far, but to a level where they are now only just compensating for your sleepy adrenals. Add in a bit of extra physical / emotional load, and bingo - a recipe for the deathly fatigue which is a classic (and very nasty) steroid withdrawal symptom.

Many experts here will tell you that, at these lower levels ( < 10mgpd), the pace, periodicity and amount of any reduction becomes far more critical if you are to avoid exhaustion and other potentially more dangerous steroid withdrawal symptoms. Even a 1 mgpd reduction in the plan can be too much too soon, and the recommended reduction at this stage is 10% of the previous dosage level at most. Many PMR 'veterans' here recommend staying on a dosage 'plateau' for quite a while before attempting to reduce again, even if feeling better. This is so as not to put too much load on the adrenals at a critical stage in the recovery process.

I recommend that you study the DSNS tapering method and trawl through the 'Tapering Steroids' tab on the right hand side of the forum web page. There are a few equivalents to DSNS, but the guiding principle with all of them is to reduce the pred dosage VERY slowly and gently from 10mgpd downwards. Also, for any reductions to be led by symptoms, not a fixed plan: i.e. it's not a 'race to zero' (sic) and patience is key. Either way, it's better to go more slowly than over-shoot and then have to take remedial, higher dosages to get things back under control - which just prolongs the reduction process in the long term.

The tricky bit is that there's no set formula / timescale for steroid reduction with PMR. It is very personal to the individual, their overall health context, the often unpredictable course of the illness, and other factors such as stress - all of which can stretch the timescale for the weaning-off process considerably. At best it's 2 years, in many cases much longer than that.

Hope this helps, keep smiling on the journey.

MB

[Mary63]

Thank you very much

[HeronNS]

Ah, another person who needs to read The Spoon Theory. I've found this very helpful:

butyoudontlooksick.com/arti...

[Mary63]

Read it thanks!!

[TooSore]

I found the spoon story very helpful for my teenager to read. I printed it out to help me explain what's going on to others.