Fatigue increased in last year

[blueturtle]

I’m carer to my wife, 66, who has PPMS. I met her 21 years ago, she was wheelchair bound, virtually no mobility from the waist down - in the last 21 years she has lost some upper body strenght and co-ordination, but overalll isn’t radically differnet in physical ability from 21 years ago apart from being a bit weaker and less co-ordinated with her hands and arms. (She can still play Minecraft, her number one hobby)

The biggest change has been an increase in fatigue that came on very noticabley about a year ago. Her energy levels are so much lower now. A couple of years ago we were living a very different life in terms of her having energy to go out and do things and be awake and enjoy them.
Whereas since last year, her energy levels on a bad day, are so low that she might only be up to getting out of bed and into the wheelchair for a couple of hours.

On better days, we still go out, shopping, cafe, bar, to the theatre - but she can’t stay awake and alert for anywhere near as long as she used to - our trips are shorter and we dont’ try to fit more than a couple of hours of activity into them at most.

We’ve see drs, and she’s been tested for all manner of things (when she first got hit by the increase in fatigue they checked in case it might be a TIA, infection, any number of other things causing the drop in energy, but eventually concluded it’s most likely just MS-related fatigue)

I wonderered if anybody had any advice.

We spoke to the MS team about the possiblity of anti-fatigue meds (i forget the name, it was drug for Parkinson’s I think, that some people took and reported a side-effect of reduced fatigue - but apparently they don’t prescribe that here anymore due to lack of strong evidence for it working, plus it causing side effects.)

We’ve been given lifestyle advice - better diet, low alcohol, light excercise (which she tries, but obviously when she’s so tired she doens’t want to get out of bed, she ‘s not really up to excercise.)

This fatigue is new to us - she had PPMS without sufferign from anything like this level of fatigue before last year - so we have no idea what a “normal” degree of fatigue even is.

Just wondered if anybody had any advice, experience, to share.

[Freshairman]

Sounds like your wife is fortunate to have you @blueturtle as you want to help her, too at least try and find out why she is now as she is, after twenty years and more of relative stability in her condition. You’re obviously worried about her deteriorating energy levels, that have appeared in the last year, especially as the drs have seemed to rule out any other medical reasons, apart from her ms. We all know that fatigue is part and parcel of ms. Some of us are affected more than others but, in answer to your question about, what is normal. I would say that normal is different for all of us. One person’s normal will be totally different from another person’s normal. When I was first diagnosed I didn’t have any issues of fatigue. Now I do. And I know that only because I don’t seem to be able to do as much now as I used too. Don’t get me wrong, I’m nowhere near your wife’s level of disability. Although I have had ms for possibly slightly longer than your wife. And I have RRMS although that’s now being questioned..at least my ms nurse is questioning it. Though that’s another story. Wishing not just your wife well, but you too.