The Lighter Side: Tonight's Scores - Deathly Fatigue:1 MB: Zero. But Reflective, and Trying to Find the Positives - As Usual?... ;-)

[markbenjamin57]

Greetings All

Well, Ok. Hands Up. Today, the DF (Deathly Fatigue) well-and-truly got me. After a good start this morning, by mid p.m. I was dragging myself around with my tail between my legs like the beleaguered CEO of a famous, equally beleaguered British financial institution (clue: 'Truly Shambolic Bank') after a roasting by MPs in the UK Parliament around IT systems and (a woeful absence of?) Crisis Management.

But then I reflected on the past weeks of all the strenuous stuff any of You Lot here who are daft enough to follow my ramblings might know: moving home, family celebrations, travelling, brawling with Tedski (always Fun), giving talks to PMRGCA local groups (even more Fun), dancing between The Pred Club and Pred Club Zero +/-, and getting up to my usual antics around the place.

Conclusion? Before you shout 'SILLY MB, YOU SHOULD KNOW BETTER!!! from the rooftops: no surprise really. A question of Pacing (or lack of), and all that?

But 'Here's the Thing', as some of our US Lot might say: on the Positive Side, the first episode of the dreaded DF for as long as I can remember (for much of my PMR Journey it used to happen frequently, and wiped-out for days on end). But, today, only for a few hours (and a quick kip) before the Energy Batteries re-charged themselves - Result!

Lesson? Look at the Big Picture over Time with the typical PMR Symptoms (Pain, Stiffness, Fatigue). Ask yourself: overall, are things getting Better - even if in fits and starts, and with setbacks? If 'Yes', then you / we are slowly making progress with this chronic illness. If 'No', hang-on in there and try to roll-with it - with the help and support of this community and / or your Doctor / Specialist. There often is Light at the End of the seemingly endless PMR / GCA Tunnel, even if it's a dim light or sometimes seems like a Mirage.

Learning? Positive 'Load' (i.e. doing things which we look forward to and enjoy), even if struggling with PMR / GCA, and even if pushing ourselves a little more than we should, aren't necessarily bad for us, within reason. It's just a question of being realistic about what I call the 'Catch-up' period afterwards, when we have to rest-up and be patient in the process (as I did today).

In my books, what I call 'Positive Stress' (i.e. exciting / pleasurable things) can't be bad for us Psychologically - and I'm convinced that must feed back into the Physiological equation, somehow. I don't know how or can't prove it, but that's my Theory and I'm sticking with it for better or worse.

The Aunties might have some ideas about this? I await their responses nervously behind the sofa with that beady-eyed rascal, Tedski, at my side - who is now tagged by G4S and under a curfew after receiving a Court ASBO (for our overseas Friends - Anti Social Behaviour Order) for chasing the famous WSM seaside donkeys and terrorising a school party of 5-year-old infants on their first ever seaside outing. Oh well, at least he keeps the Limo in good shape and cooks a fine Beef Stroganoff with Solyanka Soup. So, 'Job's a Good-un'! - unless he gets into more trouble with the Old Bill

Wishing all of You Lot a peaceful weekend, wherever you are. And try to remember: try to Keep Positive Hope and Faith on a gruelling PMR GCA Journey that, for many of Us Lot, Will (probably) Get Better eventually. And.. having a Smile or two along the way must be a good thing, therapeutically at least?

And, Finally: DON'T MESS AROUND WITH / FORGET TO TAKE YOUR PREDS!!! (unlike someone here who shall be nameless...)

'Uncle' MB

P.s; For Newbies: PMR Survivor, Dx early 2015 aged 57, started 30mgpd Pred, Helter Skelter tapering Journey, many ups and downs, but 'getting there' now at 2mgpd Pred +/- and coming out of the long PMR Tunnel. Phew..!

P.p.s: the photo is from when I appeared at a Trainers' Conference in Kiev, Ukraine a few years ago. Great Fun - and links to 'Tedski'...

[Soraya_PMR]

Ah yes! DF 1: soraya 0 as well 😴

Second week at 7mg, think I’m entering the scary 🕷🕸Adrenal Zone 👻 It’s hard to distinguish PMR from what might be sleepy adrenals, but the nausea and rather rapid gut are new to me, so thinking adrenals. And SLEEP!!! Can’t get enough. But then again I’ve done too much this week, so today was set aside for reading and snoozing. We’ll see what tomorrow brings.

Part of me thinks UP the dose. Part of me thinks, I’ve got to cross this bridge sometime. Dilemmas and conundrums.

[markbenjamin57 in reply to Soraya_PMR]

Ah ha Soraya!

Yep, from what I've learned here, the 7mgpd threshold is notoriously difficult to cross - a bit like crossing a very loooong and wobbly one? I know from experience.

I'm sure you've hit the nail on the head - additional, weird (?) symptoms as the adrenals get hopefully their act together and adjust to the reducing Preds after a long lay-off. And, as you say, feeling 'better' and doing more puts the whole mechanism under a bit of strain.

As for adjusting the dose +/- ? This seems to be the perpetual 64-Dollar question (unless you have GCA - in which case, Caution prevails). And, as usual, the forum is a good place to get feedback and opinions..

Dilemmas and Conundrums with PMR and Pred tapering... don't tell me about it!

MB

[Sheribrim in reply to markbenjamin57]

the advice i followed which really worked for me was to drop very slowly and by no more than 10%. So for you i would drop by .5% and keep on that dose for six weeks. It’s not a race and slowly is best!!! Fool the adrenals!!!

[markbenjamin57 in reply to Sheribrim]

I agree, Sheribrim - DSNS (or its equivalents) is the usually recommended tapering method and it works for many of Us Lot (even though I am known to break the Rules occasionally!).

That said, we all have greatly differing health contexts, so I think it's a matter of personal judgment. Not sure about the popular idea of 'fooling' the adrenals though - it might give some of us a false sense of 'control' over them...? Mmmm...!

Either way, best wishes and thanks for your input. To be continued...

MB

[Soraya_PMR in reply to markbenjamin57]

I agree with you about ‘fooling’ the adrenals. One requires some negative feedback < Oh! Hang on a minute chaps, we seem a bit low on cortisol, can someone knit some extra supplies? > kind of thing. And for that there’s surely no alternative than to drop the pred dose a bit, and providing no PMR ugliness ensues.....

This applies more to me just entering the Adrenal Zone from the top, but you Mark are surely at the tail end and your adrenals must be doing SOMETHING, even if stuttering and a bit work-shy?

[Soraya_PMR in reply to Soraya_PMR]

“Providing no PMR ugliness ensues....”

Ah well, this morning there was definite stiffness in my thighs 😧 despite an ultra lazy day yesterday. I can have adrenal stuff and a nudge from PMR at the same time I guess? So 10mg today, plan 9 tomorrow, then stick at 8 awhile until.....I try again to 7.

[jinasc]

Read it, smiled and..........................'T'shirt, DVD, Seen the picture etc'...........springs to mind.

Me, like Tedski, I am saying nowt......................except

Take care Mark.

[markbenjamin57 in reply to jinasc]

Thanks jinasc. Business as Usual..

[Sandradsn]

I've asked myself if overall things are getting better....umm yes and no,pred head means I can't decide.I'm finding small decisions very tricky!

I find myself saying 'I don't know' a lot.(why has font changed I don't know!)

I have just googled Solyanka soup .....meat,fish,potato,pickled cucumber and cabbage ...I don't know,I don't think so.

[markbenjamin57 in reply to Sandradsn]

Maybe there's some default in the Human Psyche, Sandra, depending on our context. That is: whether we are more naturally / genetically / experientially inclined to optimism or pessimism (aside from our religious and spiritual beliefs)?

This conversation reminds me of the old (paradoxical) joke that 'Pessimists' are happier in Life because nothing ever disappoints them...

Yep to Solyanka Soup, worth a try - but best served in Russia. Ask Tedski...

[PMRpro Ambassador in reply to Sandradsn]

You probably did something before typing the "I" - on a computer it would be Control i instead of Shift i to get a capital. Control i is a short cut to Start italics...

[Sandradsn in reply to PMRpro]

It was quite late! italics looked good😉

[HeronNS in reply to Sandradsn]

Italics made that part of your post into a zenlike poem.

I find myself saying

I don't know

why has font changed?

I don't know.

I have just googled

soup,

meat, fish, potato,

pickled cucumber,

cabbage.

I don't think so

I don't know.

[Sandradsn in reply to HeronNS]

😂

[HeronNS in reply to Sandradsn]

Note the deliberate ambiguity of the last two lines.

[Sandradsn]

People wait all week for Friday

all year for summer,

all life for happiness.

Smile while you still have teeth.

[CT-5012 in reply to Sandradsn]

Absolutely 😂😂😂

[PMRpro Ambassador in reply to Sandradsn]

Where's that come from? The lady with the restaurant round the corner from the resort on Malta has that outside! TBH - I'm not surprised, almost no-one smiles there!

[Sandradsn in reply to PMRpro]

Don't know where it came from,just remembered it😁

[Jackoh]

Yes agree important to try to keep positive and to go for those things that are going to give us pleasure occasionally although a bit daunting. Sometimes I think I've lost confidence attempting things that wouldn't have been a problem at all a few years ago. When I've gone for it though, although I might have had to rest up afterwards, it's been so worth it to do it and a confidence booster. So for me anyway occasionally have to let caution go to the wind. ( think that's the right expression!!!)

[Louisepenygraig in reply to Jackoh]

I really agree with that. I get nervous about doing things in case I can't cope or end up overdoing things but realise I get such a boost when I take the plunge I've decided it's worth it as long as I remember I may be wiped out for a couple of days afterwards and that that's ok

[markbenjamin57 in reply to Jackoh]

Jackie, I know what you mean about losing confidence about our abilities with this chronic illness (and similar others?). But as you say, 'going for it' - within reason - is a good way to regain confidence so long as we are realistic about our (new) limitations. My trouble is, I don't just let go of Caution to the wind - more like hurling it full force until or unless it bites me in the B*m..

[tangocharlie]

I came off Preds a year ago after 5 years of PMR but think I might need to go back on a low dose as I still have flares and am always tired. 2mg or 2.5 just takes the edge off aches and pains for me and reduces fatigue. BTW I had adrenal problems last year getting below 5mg Pred and had to take hydrocortisone for a few months. Symptoms were: rapid weight loss (nearly a stone suddenly in a week), reverse hypotension (blood pressure dropped dramatically when I stood up), dizzyness, feeling very unwell, like I had bad flu, aches and pains everywhere, couldn't stop crying (very unlike me).

[markbenjamin57 in reply to tangocharlie]

Sounds very typical of PMR, tangocharlie - even when off of the Preds. As the Aunties and others say, being off them doesn't necessarily mean that we are out of the woods and it is likely there will always be a susceptibility to relapses etc..

[Grants148]

Take care Mark,you have been overdoing things lately,like most of us we probably feel much younger in our minds but our bodies cannot cope with too much physical exertion,especially having the preds to cope with.l think you have done very well lately ,having moved house etc,and then there is the added stress of that rather wayward bear,Tedski,chasing donkeys when he should be keeping an eye on you.l am stuck on 3mlg of preds,rather nervous of going down further as the PMR is still lurking there and l do not want it flaring up again .All the best Mark,Thankyou for your lnformative and amusing posts.

[markbenjamin57 in reply to Grants148]

Thanks Grants I agree about overdoing it - but of course I have previous form for this kind of thing! Yep, I know what you mean about caution with Pred tapering at even very low levels - the Wisdom is to go even more slowly and stay at a level which controls the symptoms until or unless a tiny (max 10%) reduction works ok.

Of course, everyone is different - and, as You Lot know, I managed to reduce by much more / faster pre-house move and 2-3 weeks of physical exertion. It's Payback time now: but on the positive side, 2mgpd seems to be keeping everything under control - and with less physical 'load'. So, gently does it back to Pred Club Zero... and no rush!

[Grants148]

Thanks Mark,l did try taking just 2mlg of preds for three days last week,l just gradually felt worse each day,l may try going down alternate days,it did not help that l was spending a lot of time gardening,there is a lot to do out there after the long winter.l shall have to pace myself more.

[markbenjamin57 in reply to Grants148]

Mmmm, Grants. Well, reducing from 3mgpd to 2mgpd in-one-go is a 33% drop, and probably too much too fast in the circumstances?! As you say, maybe try 3/2/3/2 alternating doses for a week? Or (more gradual as per DSNS):

Week 1: 6 days at 3, 1 day at 2 (mg)

Week 2: 5 days at 3, 2 days at 2

Week 3: 4 days at 3, 3 days at 2

..etc, until you're (hopefully successfully) down to 2mg each day. And then continue as above if you're feeling ok. It also saves the fiddly process of trying to chop-up the tabs into increasingly tiny fragments..

From experience, there are still no guarantees even with DSNS (sorry Aunties) due to all the other external / contextual factors that can affect the effectiveness of a slow taper (e.g. increased physical load, stress, infections, injuries etc). But from what I've learned here, this should minimise the risks of a flare and / or nasty Pred withdrawal symptoms. And, of course, if the slow taper isn't going to plan you can 'stick' at whatever weekly mix keeps you free of them.

As for many of us, a case of Trial and Error all the way?! Be patient.. you'll get there

MB

[PMRpro Ambassador in reply to markbenjamin57]

Er Mark - don't confuse them! DSNS isn't based on a weekly pattern, that is DL's slow version.

[markbenjamin57 in reply to PMRpro]

Well spotted PMRpro - I should have added '...or its equivalents'?

[Grants148]

Thankyou Mark,the tapering you have suggested looks much better than lowering by l mlg too quickly,l shall give it a try ,starting tomorrow.

[markbenjamin57 in reply to Grants148]

No worry Grants

I know that DorsetLady's and the DSNS tapering methods are slightly different in their methodology, but they both work on the same principle: i.e. to achieve a continuous, graduated / smoother approach to Pred tapering than the often arbitrarily recommended 'x' mg per week / month periodic step-down that many GPs (and even some Rheumies) advise.

Good luck - and please keep Us Lot posted on your progress!

'Uncle' MB

[Grants148]

Thanks again Mark.