PMR & GCA: A Survival Guide

[Hopeful66]

Book arrived yesterday afternoon - thank you to all who referenced it in your posts to me - it's read and about to be re-read! It's the first engaging piece of literature that I've been able to concentrate on for months! (for some reason I can't access the website polywotsit.com - does it still exist?)

I'm only on day 2 of 30mg of Prednisolone, (after being upped from the first week @ 20mg daily), and I feel great, I woke up this morning - no word of a lie, I wondered whether I was dreaming - No pain! stiffness, yes, aching, yes - but no pain! I walked down the stairs, still had to plant both feet on individual treads, a bit like a toddler, but again, just stiffness and achy. Tiredness still there, but hey ho, I've been dealing with that for some time - It's standard, I've been logging in the forty winks for the last year now 😀

I cannot tell you how good this feels.

Downside, I'm a Type 2 diabetic and my range yesterday went from 9.0 at waking, pre lunch 18.0, pre dinner 22.4 and by night time 20.2 ................... waking this morning was 9.1 - so not great - normal levels, pre steroids were between 6.5 - 11.0.

A very strict diet was started last week - pretty hard going dropping all of my go to 'I feel sorry for myself' junk, (and wine!!!!), but I have and have lost the giddy sum of 1.5 lb since Monday last! Not great because I had managed to increase my 'misery weight' by nearly 2 stone during the last 18 months

But still onwards and upwards - I am very much aware that this high may not last, that the aches and stiffness could very well revert back to pain and extreme tiredness in a matter of hours, but I'm taking the win today ......................... I'm also taking it easy, and the washing was on the line by 10am and it's not raining ...... baby steps!

Thank you all again for the support and a magnificent read

[SnazzyD]

Well, I say make hay when the sun shines. These conditions really are a take each day as it comes game with moving goalposts. Accept that and you’re halfway there. The early days of that Pred buzz and lack of pain is a heady cocktail that can lure you into overdoing it. Don’t do it! It is tempting to go out an attack those chores that now seem like a luxury now.

You are on day 2. I found that after about 3 weeks I started to feel very ‘Preddy’ with buzzy head, tinnitus, bloaty, weird, sleep deprived, moon face etc. If that happens tell yourself it doesn’t last and won’t be like this forever, because it won’t.

Regards blood sugar. You really have to try extra hard to cut carbs because Pred makes the liver create more blood sugar even before anything passes your lips. Cutting back is often not enough, especially on these higher doses. I had to cut out all pasta, potato, rice, flours, maize etc. My treat was a few squares of 85% cocoa choc daily and weekly 2 small glasses of white wine. I also had to cut down salt to practically nothing to avoid monster fluid retention that liked to sit around my eyes and middle.

[Hopeful66 in reply to SnazzyD]

Thank you - yes, I've gone total dedicated carb control - had already switched to wholewheat breads/pastas, brown rice but decided to out the lot for now, just to see where it takes me. I'm lucky that I grow a lot of our veggies - so soups are a staple for us anyway. Last nights stew was not so much fun without the potato or dumplings - but I'd bent the rules enough with the stew in the first place! We raise our own poultry - so it's higher welfare chicken here and buy our red meat from the local farmers. I'm not so fond of chocolate, so not missed - but salty snacks, pretzels, crisps etc are my usual downfall, as was 2 bottles of white over the Friday to Sunday nights - I'd previously been having a glass every night - same amount of wine but eked over a longer time frame - the problem here was that on really painful days I could easily go for the third, occasionally finishing a bottle - hence cutting out Monday to Thursday altogether - I think that they call it binge drinking now! :/ - so no wine for the foreseeable - promising myself and looking forward to a decent Chablis for Christmas!

[Dochaz in reply to Hopeful66]

Not a fan of white wine, which brings on headaches, but I find red wine helps with the stress, muscle tension and overall sense of despair that we can feel while in the throes of this condition. Could a couple of glasses be helping to dilate the swollen arteries and induce a sense of calm? This is my very non-medically validated hypothesis!

[Hopeful66 in reply to Dochaz]

😅..... I get a little paranoid about drinking too much .......... and also a bit embarrassing! 😂😂 ........ In all seriousness I watched a couple of members of my family go down the 'drink to numb pain' route - Ankylosing Spondylitis is rife in the family, it doesn't end so well for anyone - (and no, I was tested for the gene in my early twenties)

[Merryfield in reply to Hopeful66]

Good for you for avoiding wine if there is alcoholism in the family.

[Hopeful66 in reply to Merryfield]

Avoid excessive alcohol intake - not avoiding altogether, just making sure that patterns are not emerging, that sort of thing.

[Merryfield in reply to Hopeful66]

👍

[Ridge in reply to Merryfield]

I think the art to giving up a much loved glass or two is to NOT give it up at all but to just NOT imbibe at this moment in time!! A little later perhaps!

[Merryfield in reply to Ridge]

I am so far from perfect on this point😔 I have reverted to drinking a little scotch on the rocks instead of wine 😳

[Ridge in reply to Merryfield]

Sounds great!

[DorsetLady PMRGCAuk volunteer]

Cannot access website? Probably because author has shut it down…

You can follow her on Amazon…

[Hopeful66 in reply to DorsetLady]

Many thanks, my browser kept saying it was an unsafe site ...... or words to that effect. As the website was mentioned in the book I thought I'd have a look ......

[DorsetLady PMRGCAuk volunteer in reply to Hopeful66]

Says on my iPad and laptop -this site cannot be reached …

Not sure where my book is -so can’t check!

Update -just tried from Kindle version -same response

[Hopeful66 in reply to DorsetLady]

Thank you - tried on the laptop too - as you said, this site cannot be reached, I had originally tried on my phone - internet connection may have had something to do with the response - thank you for your input though

[Charlie1boy]

That sounds a lot better, which is great for you. As SnazzyD says, don’t try to do too much as the pmr is likely to come back and bite!

I stayed with the afternoon siesta throughout the nearly eight years I was on steroids, so I’d recommend you continue with logging in to your forty winks.

You will need lots and lots of patience on your pmr journey, so make sure you give yourself plenty of tlc. Your body will need it.

Good luck.

[Hopeful66 in reply to Charlie1boy]

Many thanks

[Charlie1boy in reply to Hopeful66]

No problem. It’s just so nice to read a post that gives such encouraging news.

Paddy

[GettingThere22]

what is the book please?

[Highlandtiger in reply to GettingThere22]

amazon.co.uk/Polymyalgia-Rh...

[jolajaw]

what book are you writing about?

[Highlandtiger in reply to jolajaw]

amazon.co.uk/Polymyalgia-Rh...

[Sophiestree]

if you are on Twitter (X) it is there - @PolywotsitUK

[Highlandtiger in reply to Sophiestree]

Although last tweet/post was over 5 years ago…

[Sophiestree in reply to Highlandtiger]

ha... not much help. Do you think she's OK???

[Highlandtiger in reply to Sophiestree]

Others will probably know better than me but I vaguely remember reading somewhere on here that she was withdrawing a bit from all the PMRGCA stuff. I imagine it all became rather overwhelming! Her book has been a massive help to lots of people so you can’t blame her for wanting a bit of peace now!

[DorsetLady PMRGCAuk volunteer in reply to Highlandtiger]

She has taken a step back from the charity - she was the only moderator on this forum early days., she is still about, saw her on a zoom meeting a few months ago. Think she might have another PMRGCA book in mind. But in general think she has moved on to other interests…

Also for  Sophiestree

[Hopeful66 in reply to Highlandtiger]

Thank you for that, and ditto re the massive help - it is such an easy read too 👍

[Sophiestree in reply to Highlandtiger]

Yes, makes sense. I can see that it is overwhelming. I am in awe of PMRPro and DorsetLady for their commitment as it truly is full on and sometimes I have to step back as I have an obsessive personality and find it just gets too much sometimes, but read daily, I have learnt so much on here, not just about this condition, and find if I don't have my daily dose I feel something isn't quite right.

[Markandevie]

I too am 57 and have this awful disease and have had to change my diet by not eating bread, pasta etc but I wont give up my red wine and the odd beer. PMR has taken away my running daily, my ability to help out with any lifting and made me ( sometimes) into an emotional wreck, something that these steroids do to you and I refuse to give up on everything as I need a life too. I used to run 5 days a week and always over 9 miles a day up until July of this year but now have my walking up to 5 miles a day so happy with that. I am stuck on just under 10mg a day and have been for three weeks as the aching ( not pain) is still there in my shoulders and hands. Glad you are also having pain-free days albeit still aching but positive all the same. All the very best to you.

[Polly-Anna]

I ordered this book and it has just arrived. The introduction alone was reassuring. Working my way through it and feel hopeful there is a way forward. Thank you for your post and the many others fir sharing their experience and advice. So I don’t feel so alone with PMR.

[Hopeful66 in reply to Polly-Anna]

Hopefully it will give you some peace of mind x