Chocolate can’t do this???

[Allsgrandso]

Some of you may remember my post about the nutritionist visit and I’ve been off gluten and sugar past two months. I’ve also been tapering down using tortoise not hare method from 7 to 6mg for past week. I’m 51 and was diagnosed in July with PMR and began on 15mg pred.

So Saturday, Sunday and yesterday I had a few Lindt balls seeing as it was Easter 🐣

I had two bad days last weekend but they passed.

Last night I woke every time I turned in bed to stretch and sitting here now with heated pack on my neck. Had to leave my daughter to bus this morning and had trouble getting in and out of car... backs of legs really stiff too.

Seriously though... there’s no way the chocolate/baileys and wine oh and cake 🙈 could have done this?? I’ve been so good with my diet, feels like I’ve messed up and worried now in case I need to go higher dose. Feeling very down here today and I’m usually not.

Thanks for being here folks 🤗 xxx

[Soraya_PMR]

“I had two bad days last weekend but they passed” Are you doing too much at the weekends?

I’d stop your reduction currently and wait and see if being back on your proper diet evens things out. It stinks that we can’t treat ourselves sometimes! What did I eat? Hmm, glass of sherry, baked cheesecake (couldn’t offend DiL), red meat, mango roulade....why does hubby plonk these offending articles in front of me? Could quite happily have gone back to bed this morning, but forced myself out for a mile walk and feel better for it, although like you, tight back thigh muscles.

Feel better soon.

[Allsgrandso in reply to Soraya_PMR]

Honestly can’t make head nor tail of this anymore. Had a chilled quiet weekend and busy during the week...

Yes I will stay at 7mg for a month I think.

Would love to get out for a walk .. ah maybe tomorrow ... just feel flu like symptoms, usual stiff neck, sore back .. it’s an absolute dose!! Thanks for your reply Soraya x🙏

[Soraya_PMR in reply to Allsgrandso]

I figure I’ll ache if I don’t walk, I’ll ache if I do. So at least the walk gives me fresh air and makes me ‘feel’ normal-ish.

Hubby had a very relaxed, sat down watching TV sort of long weekend. He did nothing but moan about aching knees and ankle. I said maybe he was taking it toooo easy

I do stiffen if I’m inactive, it’s a fine line.

[DorsetLady PMRGCAuk volunteer]

Sorry to say...too much sugar and gluten in one hit!

You didn’t pace yourself with the chocolate did you 🤦🏻‍♀️, .......not to mention the cake .....nor the Baileys ....nor the wine!

Oh Lordy!!

Still you’ve got a week to get over it, before another weekend comes along. 🤔

[Allsgrandso in reply to DorsetLady]

Really?? Sugar I’m not used to could really cause all this pain and stiffness??

[DorsetLady PMRGCAuk volunteer in reply to Allsgrandso]

Sugar does have an effect on inflammation for sure, and I know PMRpro always has some negative response when she eats gluten.

Perhaps you are doing too much during the week and at the weekend it catches up with you.

[Allsgrandso in reply to DorsetLady]

Managed to stay gluten free... just sugar and I didn’t pace myself at all. Just stupidly threw all caution out....had Easter in my head the past month 😩

[Hidden in reply to Allsgrandso]

You'll feel a bit better in a few days I should think. I I have Diabetes and on 2 occasions I cheated and boy did my body let me know...with PMR pain. Once everything settled it reduced.

[Allsgrandso in reply to Hidden]

Thanks poop 🌸

[bunnymom in reply to Allsgrandso]

I overdosed on dessert at a church picnic and my face even felt sore and inflamed. I felt awful for a week. Too much sugar kills me. 😣

[Hidden in reply to DorsetLady]

Hey... NO FAIR DorsetLady! Why doesn't Allsgrandso get the famous DL "I told you so???" : (

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Perhaps because I hadn’t “told her so!”.... or maybe because you’re just too rebellious and need constant reminding! 🧐😆

[Hidden in reply to DorsetLady]

Hahahahahahahahahah! Hmmmmmm? I believe it may be the latter! : )

[SnazzyD]

If it was that lot, I’d say it was the sugar which can fuel inflammation. I didn’t feel so good at Christmas time with an increase in wine and sugar which by most people’s standards was still small. I went back to my ery low carb diet and got back to where I was health wise.

[jinasc]

I never changed my diet, I did what the leading hospital dietician said and I ditched the 'dinner plates' and used a 'ham' sized plate.

I do not have a 'sweet tooth'.

I can keep a box of chocolates in the fridge and only eat maybe one or two and quite often they get eaten by my Cousin, who has a sweet tooth. I would rather have a piece of cheese than a cake, a starter than a dessert.

One thing, I do love a hot chocolate drink.......................about twice a week.

[Allsgrandso in reply to jinasc]

I’ve always had a very sweet tooth so trying to reset it past couple of months. Just shows you it’s still there 😩 anyway I’m off it again and plan to stay on 7mg for a month. Pushing myself out the door for a wee walk thanks to Soraya 🙏

[Soraya_PMR in reply to Allsgrandso]

How do you feel post-walk Allsgrandso ?

[Allsgrandso in reply to Soraya_PMR]

The tide was in, sky was blue .. how could it not do you the power of good 🤗 felt like I was wearing a lead suit though coming home. X

[Soraya_PMR in reply to Allsgrandso]

Ah-ha! You’re by the sea The negative ions will have done you good as well then. Blue skies, love ‘em, definitely a mood enhancer. I only had grey skies today, but dry and mild.

Shall we walk again same time tomorrow? Lead suits allowing? You got a cafe on your walk? Maybe a cuppa and a rest before struggling home?

[Allsgrandso in reply to Soraya_PMR]

Awww Soraya I’m welling up here!! Thanks so much for such a lovely warm reply, you have no idea how much it means to me 🤗 Same time tomorrow 👍 and I’ll be hoping the sun comes out for you lead suits and all. Just read out your reply to my husband here .. I honestly think I’d be going crackers here if it wasn’t for the kindness and support on this group x

[Soraya_PMR in reply to Allsgrandso]

Hallo hubby <waves>

Wouldn’t it be great if we could all walk/hobble together? Ah well, we shall have to walk internetically (making up words again )

Didn’t mean to make you cry! hopefully you feel a sqidgeon brighter, looking forward to tomorrow’s walk 👍🏼

[Allsgrandso in reply to Soraya_PMR]

It would indeed be fun if we could all walk together, looking forward to tomorrow’s walk too 😁☀️❤️

[Hidden in reply to jinasc]

I like that idea! Small plates, smaller portions...

[PMRpro Ambassador in reply to Hidden]

The colour makes a difference too!

[Hidden in reply to PMRpro]

What's the best colour?

[PMRpro Ambassador in reply to Hidden]

Google it - there are different aspects, colour against background, colour of plate and food. Can't remember the details offhand though.

[Hidden in reply to PMRpro]

Cool

[jinasc in reply to Hidden]

The eyes deceive the mind or Optical illusion put to good use.

I did try a couple of different plates (bought at a charity shop) but hey really have to be pretty plain for me so are mainly white, but one has a black lacy edge and t'other has blue, yellow and green in what look like splodges but are supposed to be flowers. I still like plain white best. Horses for courses.

[Hidden in reply to jinasc]

Me too. I like plain... and light colours. I like to see my food.

[PMRpro Ambassador in reply to Hidden]

Had time to find it:

foodpsychology.cornell.edu/...

foodpsychology.cornell.edu/...

We're in an appartment this week - with tiny plates!! Struggling to get all my veggies on them when I have to cook!!!! The teaplates/sideplates are just the right size for coasters for the wine glasses (and they aren't big either!).

[Soraya_PMR in reply to PMRpro]

Are you in a doll’s house?

Had to smile at the tea plates being wine glass size

[PMRpro Ambassador in reply to Soraya_PMR]

I assume they are the same china bought for the resort 25 years ago when it was set up - that would about fit...

But when I think about it - the restaurants here in Malta have smaller plates than in the UK or home. The tables aren't huge

[Hidden in reply to Hidden]

That's why I like the diabetes carb and cals picture book. It uses small plates and shows you what portion sizes look like on them. I have a medium size bowl that I use in the main. I usually fill with lettuce and other green leaves then put main meal on it. Don't care that lettuce warmed. Then I pretend the salad leaves are carbs😂😂😂

[jinasc in reply to Hidden]

You might like to read this:

Demystifying DIABETES: In relation to Polymyalgia Rheumatica & Giant Cell Arteritis

pmr-gca-northeast.org.uk/as...

Page 4.

[Hidden in reply to jinasc]

Thanks. I will have a look at it.

[Hidden in reply to jinasc]

Hi jinsac

I have had diabetes for 18yrs. I have had a range of dietary approaches as well as 3 drugs which controlled it quite well at 48. Then dx PMR and pred. My hba1c climbed to 114 despite me asking Dr for insulin whilst on pred. Eventually got referred to diabetes clinic for the first time in that 18yrs who prescribed insulin and a weekly injection. This brought me back to bet 54 and 64 with low carb diet.

The problem with diabetes as well is that infections and stress push blood sugar up too. So the worse you feel the worse you feel. Am glad that it is discussed on the article. It will at least explain it to the. People whose doctors panic when hba1c is just in 40s.

[jinasc in reply to Hidden]

I am so pleased to see that you took the time to read the article. I try to put the link in as Diabetes is complicated enough without PMR coming along.

I lost two close friends to Type 1, one at 23 and the other at 63. I still miss them many years down the line. I often think both of them would be alive today with the progress that has been made in that field.

I hope you travel well on this journey that none of us chose to take.

[Hidden in reply to jinasc]

I think information and education are vital so always glad to see things like that. I suspect I don't worry enough about having diabetes but when it was running high in 2016 when on 15mg of pred and before strict no carbs again I worried as neuropathy was awful. Now it's back into "normal" range it has decreased a bit. The Dr refused to refer me to clinic or prescribe insulin which was extra battle.

I am sorry you lost your friends- I lost my oldest friend in 2016 and it was very hard. 🌻

[Hidden in reply to Hidden]

Hi Poopadoop, my diabetes 2 out of control at moment with sugar levels upward spiral. Hba1 about 100. Used to control diabetes by diet alone but since PMR diagnosis I'm in catch 22 situation . Appointment Friday at hospital (not endocrinologist - senior diabetic nurse) local surgery of gp and diabetic nurse buckpassed me to hospital. They said last week they are chasing it up . Am supposed to have weekly injection (not insulin, recommended by rheumy in december). They didn't get prescription raised to teach me how to inject! Hopefully better news friday. I also underestimated amount of stress I've been under since xmas. No wonder I can't get below 17 mg pred daily. Good news daughter with fibro. finally had her thyroid removal op at 3rd attempt for her Graves disease . This time next week I'll be laughing and determined to look after myself a bit better in future.

[Hidden in reply to Hidden]

Hi tansy13

I found diabetes nurses to be really knowledge, able and sympathetic. Is it trulicity they have put you on?

I know it makes things difficult with driving etc but I have felt better 're diabetes since. It just gives you extra control to deal with stress (which bumps BG up as well). Hopefully with the goods news about your daughter you will feel less stressed.

As I have said it took me a good 6 to 8 months and the support of rheumy to get referral to diabetes clinic . If you can stick to low carbs again (hard when stressed) you should feel better. Let me know how you get on. I have had a childhood dear of needles but have no problems with the daily injections. I keep a book with all my results and units taken as well as pred taken and how I feel. It helps when I see nurse.

[Hidden in reply to Hidden]

Oh and by the way. Diabetes nurse from clinic rang me when I was first referred and we discussed that my meter readings were 28 to 31 and off the scale. That was Friday and she said If it went that high over the weekend I should go to hospital. It did but I didn't. Instead despite them postponing the Monday appt I went to the clinic, explained and said I needed to see someone there and then. Within 20mins I was prescribed insulin. Trained in next 20mins and feeling better within a few days.

[Hidden in reply to Hidden]

Morning Poopadoop, trying to get copy of rheumy's letter to take to diabetic appt tomorrow, which lists medication. Not driving at moment, so ok if side effects. Lovely clear blue sky this morning, but very cold - definately a morale booster after all that rain. Am doing low carb grocery delivery order and a short walk later. Day 1 of looking after me!

[Hidden in reply to Hidden]

A great start. Fingers crossed🌻

[pjpjop2122 in reply to Hidden]

Where do i find that picture book? Im new to this PMR

[Hidden in reply to pjpjop2122]

I bought mine off Amazon but probably on diabetes UK website. Carbs and Cal's by Chris cheyette and yellow balolia. I haven't seen it in shops but it might be available through a bookshop. Chello publishing limited.

[Rugger in reply to jinasc]

Hot chocolate was my favourite treat drink, so now I have a mug of cocoa every day and feel virtuous that it helps me use more milk!

[jinasc in reply to Rugger]

The brand I use requires no milk, just hot water and it is delicious.

Before you ask 'Ringtons'

[Rugger in reply to jinasc]

I should have said the reason why cocoa, is to cut down on the sugar, as my blood sugar levels are teetering!

[Lee1945 in reply to jinasc]

you are so lucky - I have a sweet tooth ......

[Hidden]

Hi Allsgrandso, Sorry you're feeling rough. I'm in the same boat... I ate a medium size Lindt Gold Bunny and a fruit filled flap jack yesterday along with a sweet, milky coffee... My legs and arms weigh a ton and my back (between my shoulder blades) and chest (between my collar bones) aches like hell! You gotta pay to play, I guess And as DL usually says, " I told ya so."

[Allsgrandso in reply to Hidden]

Not fair is it!! Hopefully you will be feeling much improved tomorrow x😘

[Hidden in reply to Allsgrandso]

You too!

[PMRpro Ambassador]

Oh yes - some people find that when they are that good (as you have been) an over-indulgence of sugar can really wreak havoc! After 2 months you were really "un-acclimatised" I'd say. And if you had been gluten-free and there IS something in the gluten/wheat response that would contribute too.

Nothing makes me hurt that much - but then I'm also not so good. I eat gluten anyway, just wheat I try to avoid like the plague, but if I want a bit of bread (like here in Malta where they have gorgeous sourdough) I will eat some. And icecream occasionally - I live in Italy and we have a WONDERFUL gelateria in the town. But they have to be worth it.

But I would also go back to 7mg and see. This is a really sticky patch for many people anyway, your adrenal glands have to wake up, it can be difficult however slowly you reduce. You aren't heading relentlessly for zero however much you hope for that result. You are into the physiological dose range - no rush. Tortoise, not hare, remember!!!!

And of course - there is always the chance you are sickening for something...

[Allsgrandso in reply to PMRpro]

Oh God never thought of that!! Hopefully not 🙈 🤢 sourdough is I believe the best bread to eat if you are avoiding gluten.. love it.

[PMRpro Ambassador in reply to Allsgrandso]

Sourdough doesn't help with gluten - but it can help with other intolerance factors. I'm not intolerant of the gluten, but something in the structure of the starch - and sourdough does help with that apparently (even the NHS website says so!).

[ConventCassie in reply to PMRpro]

I figured that out on my own, but nice to have it verified. Now if I didn’t just love it with Grapefruit marmalade!

[Hidden in reply to ConventCassie]

That's sounds delicious. I love bitter oranges and grapefruits. It's the bread that causes issues but I love sourdough as it also has that sour tang.

[Hidden in reply to PMRpro]

My heavy duty ice cream/ gelato maker may come out of storage this summer. I have made some fantastic fat free Greek yoghurt with fruit or just vanilla ice creams. The only drawback is that without sugar fat or or alcohol you can't freeze them or they go rock hard. It's so lovely fresh that you can't resist it. You just have to make a small portion. It is a great big metal machine that weighs a ton. Not a plastic one so has good freezing and strong paddles.

[PMRpro Ambassador in reply to Hidden]

I have one - tell me how you do it! I'd not worry about fat-free Greek yogs - I use the 5% fat version for everything...

[Hidden in reply to PMRpro]

I just heat soft fruits and let them cool if fruity flavour then throw in with the yoghurt. I have just chucked frozen fruits in in the past. I dont mind no fuss cooking.

For vanilla I chuck the yoghurt in with vanilla extract to taste. I think mine takes 40 mins to mix and i like it slightly soft but still recognizably ice cream. To be honest I have used skimmed milk with vanilla and although it wasn't great it was edible. The gelato paddle puts more air in it. I like natural Greek yoghurt so am happy to have without sugar. If I want it sweeter I use the fruit one. I would suggest good silicon or wood spatula to scrape lovely icy bits into the mix. Although my dog likes those bits. It might be next week I get it out lol.

[Lee1945 in reply to Hidden]

You may find that adding some egg yolks or gelatine will help

[Hidden in reply to Lee1945]

I am sure they would thicken. I am veggie so gelatine a no-no.

[Lee1945 in reply to Hidden]

You should have no problem getting a totally vege gelatine

[Rimmy]

Yes its true if you overdo things we may get consequences - but surely it all depends how often and how much. Point is we all have to have SOME fun SOME times - so if we do decide to imbibe then I am guessing we must have thought it 'worth it' at the time - OR we could give it ALL up (that is our individual list of the offending substances) - 'permanently' - but I for one won't be joining THAT club anytime soon ....

Best wishes

Rimmy

[Hidden in reply to Rimmy]

BRAVO! BRAVO! BRAVO!

Three cheers for overdoing it, sometimes!

I for one will not let these dreaded diseases dictate my life... at least not 100%!

I will eat chocolate bunnies. I will enjoy a glass (or 3) of wine! I will roll around on the floor with Max, to the point of exhaustion!

And I will chuckle as DorsetLady tells me, "I told you so," again and again and again, because I am a rebel and giving up everything (all the time) is just not living!

Bring on the chocolate bunnies!!!!!

*nom, nom, nom*

[Rimmy in reply to Hidden]

A woman after my own less than 'perfect' heart !!

XX

[Allsgrandso in reply to Hidden]

Love that Mamici ❤️ too true!! Here’s to the next ‘told you so’ 😂

[Allsgrandso in reply to Rimmy]

I don’t want to be in that club either 🤣

[pjpjop2122 in reply to Allsgrandso]

Im so new here...i dont know where to

Ost a question. I need to have a molartooth extracted while im on Pred. Several website says it can cause hormone imbalance and even death...does anyone have sane advice?

[artfingers]

What a delightful conversation to read after Easter! I gave up all sweets and alcohol for Lent. Then on Easter had bites of white chocolate bunny ears (then head) now on to the shoulders! as well as wine with dinner again. Not much change in how I feel thank God but we also have the week off work so no stress which is my big game changer. I am parcel-ing out the sweets as I do so love them! Keeping an eye on my weight, still working out daily so that helps. I wish you the best - keep us posted on if the pain goes away...

[Allsgrandso]

Well feel like a new woman today!! Unbelievable 🤣 stiffness and soreness down by 70% I’m guessing... I’m still not convinced it was sugar btw🙈 🙈 🙈 will do a test at the weekend lol

[Soraya_PMR in reply to Allsgrandso]

Brill

What will you test with? Baileys, wine, cake or Lindt balls?

Did you walk again today?

[Allsgrandso in reply to Soraya_PMR]

Sorry only back now!! Very busy week but it’s the weekend 😁 didn’t manage to get out for a walk since as had to pace myself with work. Will today hopefully and next week looks quiet🤞A good few days all in.... haven’t decided what to indulge in yet lol

[Lee1945]

I had no idea how much taking Pred was going to affect my life!!

[PMRpro Ambassador in reply to Lee1945]

It doesn't have to - it gave me my life back and it is fine. I wouldn't be without it.

You just have to learn how to manage it best for you. Just ask - someone will have been there.