Long Covid? Or something from the autoimmune menu?

[PMRpro]

theguardian.com/world/2020/...

Thought the discussion about the treatment was interesting - what we keep going on about seems accepted.

[DorsetLady PMRGCAuk volunteer]

Glad to see pacing is mentioned.

[PMRpro Ambassador in reply to DorsetLady]

Thought that

[Longtimer in reply to DorsetLady]

Had "real" flu in my late 30's took over a year to have any energy., horrendous...pacing was key...but the fatigue was often thought of as tiredness!.....now at last they might look into it...grrrrrr!

[Thelmarina]

Excellent last paragraph. Recognise that mental activity can be as tiring as physical activity, listen to your body and pace. Liked the last line ‘ It did take me twice as long as it used to, but I made sure I stopped for a cup of tea,” she said. “It felt great.”‘ QED! 👍

[HeronNS in reply to Thelmarina]

An example of non-physical fatigue: Today I made a quick trip to the supermarket. Then I met two acquaintances for a pre-arranged get-together and, in our masks, we chatted about children's books and read books to each other. Two hours later I went home (five minutes to get home), made a cup of tea, sat down, turned on laptop. Forty minutes later I woke up. Tea stone cold, but I'd had a nice nap. 😴

[Thelmarina in reply to HeronNS]

I’ve been there. The stimulus is so good and vital for our whole being but best not to add chat with friends to the ironing for that day! 😅

[SheffieldJane]

Absolutely perfect, common sense advice for once. Inspiration I needed right now, when exercise can actually feel dangerous. Thanks for sharing it PMRPro. Definitely going to hobble round the block tomorrow, come rain or shine. Use it or lose it as my daughter has been telling me.

[Kendrew]

Thankyou for that. Found it really interesting and it just reinforced all the advice you give on our site regarding this matter. I can completely understand the theory behind GED but as we always say about most things.....'one size doesn't fit all'! Throughout my illness, I've been fortunate enough to be able to do my river walk every day.....even on my 'bad' days. This has been my 'exercise'. Three times around the river equates to ½hr of walking. (pre PMR I'd do ½hr on treadmill at the gym) However!.....I learnt very quickly from here about pacing and it's important to say that the 'brisk walking' I did on the treadmill was quickly replaced by a 'gentle' walk around the river. Now, on my bad (or less capable) days I'll complete only 1 or even only ½ a circuit, and sometimes if I've begun my walk and find I'm tiring quicker than I expected to, then I come straight home (I'm never more than a few mins from home anywhere along the route) I know not to ever 'push' myself though, because it doesn't improve.....or enhance....or develop my physical strength. It would simply cause some very unpleasant consequences and it's definitely not worth risking that. However, being outside definitely improves my 'mental and emotional ' well being, and I always feel stronger in that respect after my walk. Just being able to have a short walk outside my front door is precious.....The joy is in those small achievements!.....and if a really bad day comes....as it surely will.... when I can't go for a walk, then I'll sit in my garden instead or by my window and watch the birds! Sorry....I fear I've rambled on a bit!!! Is that a PMR thing too?? Haha! 😄

[Thelmarina in reply to Kendrew]

So sensible! Carry on! 😅

[PMRpro Ambassador in reply to Kendrew]

I often used to explain the exercise approach with a warning to choose a route where you could bail out easily - whether it was the option to get on a bus, stop at a cafe/park bench or whatever - if you crashed. One lady who used to be on the forum found herself sitting on a garden wall just in the next street to home and a neighbour very kindly rescued her! It happened to me near the bottom of a ski run - the last couple of hundred yards took half an hour!!!

[Kendrew]

Wow! Skiing.....now I'm feeling just a little envious. Not of the predicament you found yourself in obviously, but I'm assuming it was an Italian ski slope??

[PMRpro Ambassador in reply to Kendrew]

Here where I live - we'd been here December and xmas and I'd been sking fairly OK but then had a big flare when I got home (still undiagnosed at the time) and for another unconnected reason was told I couldn't drive (wrongly as it turned out). I could do nothing at home, we'd moved to a house with 1 loo upstairs which meant stairs all day ... I managed to get here - and no stairs mean I could walk better. I had my season ticket so went up the mountain just for the fun and sun and discovered the hip action in skiing loosened the stiffness very well. One morning I felt really good after my starting 3 short runs - and tried the fourth. Once I got back to the top I went home that day!!!!

[Joanbill13]

Thanks as usual. Interesting article. Something applicable to us PMR suffers I think

[Pipalina]

Hello to you...very interesting article and similar in topic to a recent post.

healthunlocked.com/pmrgcauk...

I commented in this post that as someone who contracted ME/CFS in 1992, following a viral attack, I recognised many similarites in symptoms between ME & what they are now calling long COVID.

Dr William Weir comments in the Guardian article “There are so many similarities between long Covid and ME/CFS it leads me to believe the underlying pathology is probably the same – except that long Covid is presenting as an epidemic, whereas ME/CFS has presented in a very sporadic way, and by no means in such large numbers in such a short space of time,” said Dr William Weir, a consultant in infectious diseases with a special interest in ME."

As an aside, in about 2004 Dr Weir was required to prepare an independent medical report about the degree of my ME/CFS and its effect upon my day to day life and likely effect in the future.

He showed great knowledge and empathy - not something you often came across relating to ME/CFS in those times, and sadly, occasionally, present times.

Unfortunately, the "Autoimmune Menu" as you call it - has a lot of choices on it!

[PMRpro Ambassador in reply to Pipalina]

I was thinking more in terms as it being an addition ...

[Jackoh]

Very interesting article thank you.

[tangocharlie]

I had a strange virus in my 30s which was never properly diagnosed, but it was around the time of 'yuppy flu' otherwise known as ME. I also had some kind of virus/flu that dragged on for months in 2011 and coincided with the onset of PMR. I often wonder if there is a link between that and the PMR I have now, as the fatigue is very similar. I know things like Lyme appear similar to PMR fatigue. We shall never know. I hope one of the good things that comes out of Covid is a better understanding of how debilitating and long-lasting fatigue is as many doctors believe 'it is all in the mind'.

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Sure there is a link....and yes let’s hope they “get” long lasting fatigue.

[PMRpro Ambassador in reply to tangocharlie]

So did I, in my mid-20s - and it then disappeared for YEARS. But I had had the fatigue stuff for over 4 years.

[tangocharlie in reply to PMRpro]

Actually yes, my memory was wrong, it was when I was 25-26 and had gone by my 30s, lasted about 2 years I think. I was fine from then until hitting menopause at 48-50 - yet another thing that might have been a trigger for PMR.

[PMRpro Ambassador in reply to tangocharlie]

Then I had some other sort of fatigue in my mid-late 30s with sweats and my wonderful gynae decided to try HRT - and it dealt with a lot too. I stopped it and then I think less than 6 months later the PMR first started

[Dewdrop456]

Thanks,very interesting.I had Covid-19 in March and although most days I don’t stop at all, about once a week I find that I have to have a ‘crash day’as mentioned in your link.