I wish I’d.....

[Maisiek]

I wish I’d watched my weight from the very beginning : I put on 3/4 stone before I realised and now it’s so hard to lose: what Other “I wish I’d” do members have to warn each other ?

[MrsNails]

I wish l’d taken time off work instead of being a Martyr both before diagnosis & after treatment but within the year l’d Retired on Health Grounds but really wish l’d played it different at the beginning!

[Phoenix51 in reply to MrsNails]

I’ve sent you a private message hopefully it reaches you but I’m not sure I’ve done it correctly 🙄

[Maisiek in reply to Phoenix51]

Can’t see anything? I’ve messaged you.

[Phoenix51 in reply to Maisiek]

Apologies that message was for MrsNsils I’m not quite getting the hang of this !

[Maisiek in reply to Phoenix51]

Me neither! no probs.

[jinasc]

If you want a copy of this article send me a PM with your email address and I will send you a copy and then delete your email address.

Demystifying Diabetes’ in relation to Polymyalgia Rheumatica & Giant Cell Arteritis (25.1.16)

Karen Craggs

Lead Specialist Dietician-Diabetes

Newcastle Diabetes Centre

Karen came to a support group meeting in January 2016. People with Type 1 within a year lost weight and the just diagnosed Type 2 also lost weight and two of them the type 2 went away.

The rest of us, who tried it, just lost weight. Best kept secret, dump the dinner plate and use a ham size plate. The old saying "your eyes are bigger than your belly" is true. The Eyes over ride the signal you are full, because there is still food on the plate.

[TheMoaningViolet]

I wish I'd got a dog before the pandemic started, to force me to do decent daily walks and keep my stress levels down.

[Maisiek in reply to TheMoaningViolet]

Oh yes I love my rescue doggy: I do hope you can get one : rescue greyhound? X

[Bcol in reply to Maisiek]

Oh yes, we used to have 2 of them, beautiful dogs. Now have a Border Collie and a "something" else, sort of Terrier/???????

[Maisiek in reply to Bcol]

Ha yes we’ve got a “sort of” terrier too! Mummy was a Yorkshire terrier but we’re not sure about daddy 🤣

[Bcol in reply to Maisiek]

No idea what Mum or Dad are/we're as we rescued him when he was 10.

[DogAgilityObsessed in reply to TheMoaningViolet]

I wish I'd got *another* dog/puppy!

[Sally001]

I wish I would've been more aware of weight gain while on pred at the beginning too; I gained 50 pounds in a short period of time and am still trying to lose the weight. It is an ongoing battle.

[Maisiek in reply to Sally001]

Managing to stand still with low carbs ( sort of) 😰 x

[Hidden]

I wish I had have done something about it sooner! Thinking back; waking with severe pain in the night, feeling that I been hit by a bus, almost paralysed, wondering how I was going to move / turn over. Struggling in the night to lower onto the loo, wishing I had a raised seat, and then thinking omg my arm is shorter than it was before bed, how am I going to perform the necessaries (maybe too much info). Bending down to do the dog’s water bowl in the morning and having to think about how to get back up again to standing. Pain, stiffness, discomfort! Just a few of the symptoms that others may recognise and relate too. Should have done something about it earlier!! Ah well, better later than never and thank goodness for prednisalone! Claire 🙂

[Maisiek in reply to Hidden]

Arm too short- oh yes ! 🤣

[PMRpro Ambassador in reply to Maisiek]

Yes, I use that description too!!!

[Maisiek in reply to PMRpro]

Gosh what we all need is a bidet with a fountain 😂

[S4ndy]

My poor cat has to stand by until I've dropped his food next to him in the mornings I too suffer from arms being too short 😂😂😂

[Maisiek in reply to S4ndy]

Yes , filling up the water bowl from a great height 🙄

[S4ndy in reply to Maisiek]

He often gets an impromptu shower 😺

[tangocharlie]

I wish I'd known more about PMR from the onset. For the first few years I just trusted what my GP said and didn't feel the need to do any research, just kept calm, did what I was told and carried on. I would then have been able to question some of the things I was erroneously told and been more involved in deciding my care and Pred dose. I wish I'd known that it was not just a case of getting down to 5 Pred a day within 6 months, the fact that I was still crippled was crucial and I should have been on a higher dose. I wish I'd known that it's not all over in 2 years. I wish I'd been able to challenge my GP who told me the reason I had put on weight was because Pred increases your appetite so I was over-eating, even though I was doing my best to cut calories. I wish I'd known that actually doctors know very little about PMR and are making it up as they go along, including rheumatologists, but there are support groups like this with experienced patients who know a lot and are amazingly helpful to those of us struggling. I wish I'd known to trust my gut instinct and to complain more when things didn't sound right. As a general 'I wish I'd known' I wish I'd bought Microsoft shares in 1993 as Bill Gates was right to say it was the future

[Alchemy8]

I wish my doctor had told me about this forum. She is part of the large band of doctors who merrily tell you it will take 18 months to 2 years. I had no idea about the complexity of the condition. I knew it was going to be a total life change and the opportunity to put a lot of things right at many levels in my life but had not bargained with the indepth study (myself as guinea pig) of tapering, diet, rest, exercise, as well as what kind of complementary therapy works and what doesn't. I am learning to befriend my body and connect with it at a deeper level which is a gift in itself (though perhaps not the path that I would have chosen) but then I was overriding the stiffness for years. It was only when my first doctor said I had post-viral flare up (I had complained that I had to do 30 lengths of the pool before my stiffness went) and I should rest that I found myself experiencing pain and greatly reduced mobility. So I also wish I had actually heard of the condition to start with, its symptoms and relationship with stress and doing too much.

[PMRpro Ambassador in reply to Alchemy8]

I've just been part of a zoom meeting with one of the UK experts in the field - who put up a slide that it is "older people" with an average age of 75 and that half of patients are off pred in 18 months to 2 years. OK, maybe the forums are skewed and younger people tend to gravitate here - but I refuse to believe either of those factoids. They really don't match the work from ERic Matteson and co at the Mayo in Rochester who live in the middle of a hot spot for PMR. His figures reflect what I have seen over the last 12 years on the UK forums.

[Maisiek in reply to PMRpro]

Rochester “hot spot” for PMR: what factors are at work there do you think?

[PMRpro Ambassador in reply to Maisiek]

It is in Olmsted County, a focus of Scandinavian emigrants so a high level of Scandinavian genes which are a predisposing factor to developing PMR.

[Alchemy8 in reply to PMRpro]

Did you put him right PMRpro?!! And like Maisiek I am curious about this Rochester analysis.

[PMRpro Ambassador in reply to Alchemy8]

practicalpainmanagement.com...

[Phoenix51 in reply to PMRpro]

The age thing really frustrates me.. I see it snd hear it everywhere. I’m sure it leads to misdiagnosis when those under 60 present with classic symptoms.