Update 3 Getting the right treatment : ... - PMRGCAuk

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Update 3 Getting the right treatment

Romilly2 profile image
54 Replies

Rollercoaster ride today ! Receptionist called back to say no prescription, the GP wants to do a blood test ! I had a complete meltdown. She said the advice and guidance actually said ‘ sounds like PMR , can be managed by primary care but do a blood test then if raised markers put on prednisolone 15mg’ OMG NO NO NO . She said come and pick up the urgent blood request 🙈 I actually started to hyperventilate and my husband came rushing in . He actually took me to get the blood test ( first time in 40 years ) sign of how he’d never seen me In This state before ! On way back I said take me to the surgery so I can make an appointment to see this woman who has never actually seen me and is ruling my life . At reception when I gave my name the receptionist just said ‘ oh yeah she’s done a prescription for prednisolone, it’s at Tesco pharmacy’ WHat WHAt WHAT ?????? Talk about an emotional rollercoaster. So now I have them in my hot sticky hands but emotionally wrecked 🤪

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Romilly2 profile image
Romilly2
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54 Replies
Maisie1958 profile image
Maisie1958

Sorry not sure I should have “liked” this but definitely empathy.

Romilly2 profile image
Romilly2 in reply toMaisie1958

Yes I’m sure ! Sorry it was such a ramble as I know everyone has their own issues , but it’s like living in a bad dream ! Anyway got the outcome that I wanted in the end 🙏

Nextoneplease profile image
Nextoneplease

So glad you got the pred and the blood test in the end 😊

Really though, you shouldn’t be made to panic like this, whatever happened to patient care ???

All the best and I hope you have a restful weekend and begin to feel a bit better xx

Romilly2 profile image
Romilly2 in reply toNextoneplease

Thankyou! You too 🙂

HeronNS profile image
HeronNS

I just went back and looked at your earlier post. No wonder you were distraught when it looked like your diagnosis was going to be questioned without the pred trial. Hope you are now already beginning to feel a whole lot better! P.S. When I was first ill with PMR it was a meltdown in front of a sympathetic receptionist who got me a new doctor (long story).

Romilly2 profile image
Romilly2 in reply toHeronNS

Yes finally hit the meltdown today ! Shock to my husband as he’s never seen it before in 40 years . Funny I don’t think I’ve really sobbed in years , maybe it was what my body needed 😩 ( Always looking for the positives !)

HeronNS profile image
HeronNS in reply toRomilly2

Crying is supposed to be good for us.

medicalnewstoday.com/articl....

SheffieldJane profile image
SheffieldJane

So so stressful!

Romilly2 profile image
Romilly2 in reply toSheffieldJane

Life is full of stress I know for everyone, you never know what people are going through, but this feels like it’s been my biggest challenge. Maybe I’m just getting older and wearier ! Anyway onward and upward to a new day 🙂

123mossie profile image
123mossie

How awful, no one should be made to feel like that. Hope you’ll be feeling better soon. Where would we be without this forum.

Romilly2 profile image
Romilly2 in reply to123mossie

Yes it’s been my saviour these past few weeks and I’m sure will be on the future ! Have a lovely weekend everyone 🙂

123-go profile image
123-go

What a horror story that should never have been allowed to continue in the way it did. I'm so sorry for the stress and distress heaped on you. Time now to have faith in your medication and to give your mind and body the rest it needs. Best wishes 💐.

Romilly2 profile image
Romilly2 in reply to123-go

Thankyou for your kind words . I realise that I’m not alone in this situation but yesterday put me in a different zone and had to blurt it all out!!! Feel very humbled to have the support from this group and all the amazing information ❤️ I was awake at 4.30 having taken a banana and flask of tea to bed for when I woke up to take the Pred . Felt like a child at Christmas! Won’t be normally up at 4.30 😂 . Feels like today is the first day of the rest of my life 🙏

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRomilly2

No, you are not alone, and we do understand, many of us having been in similar situation... and yes today is the first day of a new you, you may not like every day, but there is a way forward now, and we'll guide you through.

Romilly2 profile image
Romilly2 in reply toDorsetLady

Thankyou 🙏

123-go profile image
123-go in reply toRomilly2

This is where the phrase, "It's good to talk" comes into it's own. People's problems, worries and illnesses are diverse and if talking about these things engenders support, a feeling of relief or a way out of a hole what could be better? I'm sure you'll go forward with positivity and the knowledge that what sometimes may seem insurmountable is only a part of the whole journey. 🙂

Romilly2 profile image
Romilly2 in reply to123-go

Absolutely 🙏👍

orangemax profile image
orangemax in reply toRomilly2

That's what is so great about this forum!! You can melt down, yell, fall apart, scream - whatever it takes, and ALL of us totally get it!! We've all been through some part of what you're going through at some point - the pain, the frustration, and now finally the relief! We're all glad for you at this point - now go and get well with all of our blessings!!

Romilly2 profile image
Romilly2 in reply toorangemax

The support has been a lifeline! I’m going to do another update today as things have massively improved this last two weeks 😁

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sorry to hear - what a nightmare…. Now just calm down (if you can) and have a (very) restful weekend - and let the pills do the work. 🌸

Romilly2 profile image
Romilly2 in reply toDorsetLady

Will do ! Enjoy your weekend too !

Kendrew profile image
Kendrew

Hallelujah!Now....deep, deep breaths!😌

Romilly2 profile image
Romilly2 in reply toKendrew

Yes WiM HOFF forever 😂😂 Have a good weekend too ! Just read your profile . I was working on ‘ the other side ‘ in the early 80s at LGI in intensive care physio 😁

Kendrew profile image
Kendrew in reply toRomilly2

Hahaha 😂 Ice cold showers all round!!Yes...the two hospitals were quite competitive weren't they...but I like to think in a friendly sort of way. Both hospitals were (and still are) leading lights in their differing chosen 'fields' of expertise. I'd have been happy to work in either..I just ended up at Jimmy's. 🙂

Romilly2 profile image
Romilly2 in reply toKendrew

Loved my time there in the early 80s . Lived in Hyde Park and nights in the Warehouse, happy days ❤️

Kendrew profile image
Kendrew in reply toRomilly2

I lived in Meanwood and remember the Warehouse....and Cinderella/Rockerfellas!!😂

PMRpro profile image
PMRproAmbassador

You couldn't make it up could you!!! The trial can be done without any more ado - though having a blood test is a good idea - but the GP should have done it immediately.

My hope is that all these fence-sitters get PMR themselves at some point, severely ...

Romilly2 profile image
Romilly2 in reply toPMRpro

Yes I’ve thought that in my dark moments 🤪 Along with Hashimotos and unfortunately juvenile diabetes ( my daughter has been type 1 for 30 years ) the level of ignorance around these subjects in healthcare is astounding 🙁 Anyway educate educate educate , my mission for life !

cycli profile image
cycli in reply toPMRpro

couldn't agree more. tired of hearing the same story. Had a 20 min. conversation with a retired srn at my gp's yesterday. Nice lady and troubled with various conditions but still upbeat. Said that too many degree qualified nurses not wanting to or prepared to do the basics like bedpans and clean sick etc. Not enough hands on in different situations to gain real all round experience of what proper nursing i.e. caring for the patient (her words) was really about and what was truly needed. She didn't have the technical education to go high up medically, but what she knew practically from learning hands on in different disciplines made her invaluable. she said it used to be a vocation, but when they made degrees a necessary factor they turned it into a profession.

Longtimer profile image
Longtimer in reply tocycli

Absolutely.....I was working at a University and couldn't believe when they said we are starting nursing degree courses.....no-one could believe it. Like you say it used to be a vocation, it has been said often some nurses feel it's beneath them to do the basics...A lady I know had cancer treatment, was desperate for the loo.....after ringing and waiting for over an hour and being told she would have to wait, she wet the be d........they had to do the basics then!!

cycli profile image
cycli in reply toLongtimer

sad isn't it? but have to believe it is true.

Whippetygirl profile image
Whippetygirl in reply toLongtimer

I did my SRN training in early sixties when ward sisters were quite often dragons and matrons were gods, you certainly had to be on the ball. We had to do pressure area rounds twice a day to prevent pressure sores , unheard of today. That when nurses were nurses.

cycli profile image
cycli in reply toWhippetygirl

like I said the training needs a complete rethink and reset to change the focus back to where it should be degree or no.

Longtimer profile image
Longtimer in reply tocycli

Screens, that's where you find a lot of nurses at the end of the wards....not in them....

Longtimer profile image
Longtimer in reply toWhippetygirl

You brought back memories of my mum to me...she died in a hospice in 1990 of cancer, wonderful care....they were rewarded for turning patients every hour, none ever got pressure sores...sadly some are now in hospitals........

Romilly2 profile image
Romilly2 in reply tocycli

Absolutely! The huge value of TOUCH with the sick and not so sick is so vital . Those skills sadly gone . Even my own past profession , Physiotherapist, is more about exercises and worse , sheets of exercises, when touch contact was always so important.

cycli profile image
cycli in reply toRomilly2

we are so afraid of adverse reaction to touch and the threat of legal action. You can't beat the value of physical interaction.

cycli profile image
cycli in reply toRomilly2

I should add that this retired nurse went on to say she didn't want to be promoted and that sitting at bedside holding their hand or tidying them up and just caring was as important as their medication. Is it that we don't appreciate the true nurses, that we are attracting the wrong sort, that we reward the wrong attributes, that we reward qualifications above caring ? We need to step back and reconfigure training, and how we reward and assess those who give true care. It is about paying what someone is worth but it is also about rewarding the appropriate values.

PMRpro profile image
PMRproAmbassador in reply tocycli

My degree qualified nurse daughter still does bedbaths when on a ward. Her colleagues would tell her that she didn't "need" to do that, And her response was that by doing that she had the best possible overview of a patient's mental and physical state. She picked up the ones circling the drain - and the pressure sores etc that would take them there if ignored.

cycli profile image
cycli in reply toPMRpro

top marks for your daughter and I am certain there are still many who share her approach. However your direct example demonstrates a change in attitude and not good for NHS care in general.

PMRpro profile image
PMRproAmbassador in reply tocycli

The old-fashioned vocational qualifications had their place - as soon as they called the identical training degrees there was a different attitude. And the really good candidates for nursing couldn't always get onto a degree course

What is horrifying now is that nurses can qualify with their degree without ever having worked on an ordinary ward so haven't a clue about how to run one. That does depend on the Uni of course but the nurse daughter says she ends up having to train newly qualified staff as they have never done basic stuff before.

cycli profile image
cycli in reply toPMRpro

That is truly horrific. Like it or not there has to be a hands on practical element to nursing training which includes bedpans and physical interaction with patients. This disconnect exists in other disciplines. When I trained at college in the late 60's to be a furniture maker I was trained by time served cabinet makers. Over 50% of the time was practical. It's now 20-30%. It is a degree course now and yiou don't need letters after your name to be able to cut a dovetail joint.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tocycli

“you don't need letters after your name to be able to cut a dovetail joint.”..

No you don’t, but in today’s world you need a piece of paper to say you can!

Longtimer profile image
Longtimer in reply tocycli

My son is an engineer and he was telling us today our grandson last week at college passed an exam on paper that he did years ago.....without ever touching a wire!!...this horrified and worried my son.....he will be showing him how it is done practically!

cycli profile image
cycli in reply toLongtimer

No idea of mass either, no practical handling. When 2 jags was deputy PM I was commissioned to make his new offices rec. desk at Victoria station . Glass 4 storey bldng. Atrium to the roof open plan rec. Architect designed stainless steel rec. desk.9 meters long all surfaces brushed s.s. Front vanity panel alone would have weighed 250lbs. He designed it as one piece. No idea how to earth it or isolate sections and installed 240volt heating system into frame. I asked if he'd designed it as a bomb shelter to protect from falling glass. I redesigned it so it could be transported and installed as sections and worked out how to earth each separate panel. Completely clueless.

Longtimer profile image
Longtimer in reply tocycli

Goodness me......

Longtimer profile image
Longtimer in reply toPMRpro

So we can only assume that nursing assistants ect on the wards are doing most of the "work".....

PMRpro profile image
PMRproAmbassador in reply toLongtimer

All the unglamorous stuff!

cycli profile image
cycli in reply toPMRpro

but of course.

Longtimer profile image
Longtimer in reply toPMRpro

Exactly....

cycli profile image
cycli in reply toLongtimer

looks like it

cycli profile image
cycli

that's what is so wrong because in reality you don't. You can demonstrate your ability whether practical nursing or cutting a joint, and should be a compulsory element in any job .

MiloCollie profile image
MiloCollie

I have a couple of stories similar but I’m twitching just thinking about them. Crap communication at the gp surgery. I was so stressed with it all last year I was hyperventilating too. Good luck on the pred!

Romilly2 profile image
Romilly2 in reply toMiloCollie

Yes communication is such an important element in every walk of life, especially in situations with patients, who are naturally going to be stressed ! That’s a whole other thread as well as practical skills !!!!!!

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