The seemingly good, bad and ugly rheumatologists

[Body_bonkers]

Due to an administrative error I had the pleasure of an appointment with a third rheumatologist yesterday. Same old story however - you cannot have PMR at your age or blood work. He wants me to reduce steroids even faster and under no circumstances increase. I can take paracetamol for the pain or stiffness but only if desperate ! Not a clue what is wrong with me (his words) but referred to the default fibromyalgia when all else fails. Being referred back to the second rheumatologist ‘care’ and hope this does not result in another U turn. He made me feel so invisible

[SheffieldJane]

….and then he draws a paycheque- shameful! Good luck🍀

[piglette]

If the steroids worked it will not be fibromyalgia.

[Body_bonkers in reply to piglette]

Thanks piglette - I only learnt this on another post yesterday. I had an immediate response with c.90% of the pain and stiffness gone when nothing else has helped - they know this so can only assume education on Fibromyalgia is as bad as PMR !

[piglette in reply to Body_bonkers]

Common sense seems to be dead in the field of rheumatology.

[Body_bonkers in reply to piglette]

I think you're born with common sense but training is clearly not fit for purpose

[piglette in reply to Body_bonkers]

😄😄😄

[PMRpro Ambassador in reply to Body_bonkers]

I don't know - I've met a few without a drop of commonsense. At any age!

[Stills in reply to piglette]

I’m lucky my diagnosis of Stills occurred in 1979 before this current apathy set in, goodness knows what they’d diagnose today, depression or hypochondria perhaps.

[piglette in reply to Stills]

Depression and anxiety isn’t it?

[Body_bonkers in reply to piglette]

Yep - took me three appointments to get past the antidepressant pushing

[Stills in reply to piglette]

Yes, I was being cynical

[Stills in reply to Body_bonkers]

And thyroid conditions too it seems

[PMRpro Ambassador]

As piglette says - if pred helped, it is NOT fibro.

The role of a rheumy is not to take medication that works away, it is to walk alongside you to achieve a decent quality of life. All we can suggest is a private visit to a reliable PMR expert.

[SnazzyD]

Sigh…

So what happens on your 50th birthday in what will be months time? Or are they of the 70’s only group? You’d hope that it being their specialism, they would have read the guidelines.

[PMRpro Ambassador in reply to SnazzyD]

And understand how you get an AVERAGE age of 72 when a LOT of patients with PMR are approaching 80!!!!

[Gimme in reply to PMRpro]

That particular mathematical equation struck me rather early on too. It does undermine my trust when professionals are unable to grasp such basics.

[BettyE in reply to PMRpro]

I could offer a lesson on averages that nine year olds understood!

[PMRpro Ambassador in reply to BettyE]

Maybe we should offer it as a video link ...

[Body_bonkers in reply to SnazzyD]

It's absolutely insane SnazzyD. Suspect the age discrimination is more of factor because my blood work was fairly normal too. They must be scared of possible medical negligence claims dishing out steroid seemingly without good cause

[PMRpro Ambassador in reply to Body_bonkers]

But it is thought that it is more likely that blood markers will be low in younger patients ...

[Body_bonkers in reply to PMRpro]

My CRP was 9 PMRpro so not a million miles from the marker 10 that I heard Professor Dasgupta mention

[PMRpro Ambassador in reply to Body_bonkers]

My CRP never budged out of the normal range. My ESR ran at 16-18 during an awful flare when I could barely move. My normal ESR is 4.

[Body_bonkers in reply to PMRpro]

Far too much reliance on blood tests - I've suffered years unnecessarily with other conditions too

[DorsetLady PMRGCAuk volunteer]

He made me feel so invisible

That’s dreadful, what happened to the caring profession?

[PMRpro Ambassador in reply to DorsetLady]

My nephew has just spent some time at the local hospital with a rather poorly 18 month old with RSV who was struggling to maintain her oxygen levels. The patronising consultant decided she was fit to go home - they said no she wasn't. they knew their daughter. It turned out they were right, the O2 levels went off badly later. The patronising consultant said "I want you to feel heard ..." I pointed out the answer to THAT is "Well listen then",

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very patronising , wonder if he would have said same to an adult male patient….

[Longtimer in reply to PMRpro]

So shocking what happened to “Do no harm??”

[Gossiplady in reply to PMRpro]

Hi PMRPro! I am speechless. I do hope life is improving for her.

[PMRpro Ambassador in reply to Gossiplady]

She's home - the extra night made the difference.

[Gossiplady in reply to PMRpro]

Oh great. I am so pleased.

[JGBH in reply to DorsetLady]

Unfortunately I see very little care coming from this so called caring profession. It seems many enter this profession for status the title gives them (too high in my esteem, they need to have instruction in humility) and yes, the financial rewards although they are complaining. After all they chose to become doctors, nobody forced them. Unfortunately patients suffer. It is frightening when one is very ill and relies on them to help.

[PMRpro Ambassador in reply to JGBH]

They did mostly choose to be doctors under very different conditions to now.

I was watching a programme about the critical care ED at Stoke Royal earlier - one of the critical care medics was talking about how he is just one small part of a large team that saves people's lives - he really sounded very very humble.

[JGBH in reply to PMRpro]

Indeed I have met a few humble consultants but many are still believing they belong to a superior elite, unfortunately. They do not seem to listen to patients because they ´know better’! They certainly do not communicate with other consultants when a patient has multiple complex health issues… each ticking their little box, work done, no consideration like treating the patient as a whole…

[Body_bonkers in reply to JGBH]

Totally agree - what might be achieved if these three rheumatologists talked to one another. I can deal with the arrogance but expect them to be up to date on latest medical research and to pay attention to patients who know they're own bodies. This one only had 13 years experience and seemed to revel in telling me he disagreed with someone 3 x his experience who made my initial diagnosis

[PMRpro Ambassador in reply to Body_bonkers]

Inborn arrogance ...

[JGBH in reply to Body_bonkers]

Indeed! Their egos are often much too big for the consulting room. They often state that such or such a drugs does not cause problems to patients when you explain to them that a certain drug really interferes with your body. They know it all…. I call it ‘book brainwashing’ in that they believe everything that is written (probably by big pharma companies) in their book, rather than paying attention to what each individual patient is telling them. Indeed we know our bodies. We are individuals who react differently to treatment but they ignore it often.

[Body_bonkers in reply to JGBH]

Can't help feel it does not help being a female - some can't handle strong women and once you hit mid-life you opinion matters even less

[JGBH in reply to Body_bonkers]

I do agree. I always take notes with me… you should see the face of some medics when I get the notes out of my bag…. Some seem surprised I should be able to take charge of my health issues.

[Body_bonkers in reply to DorsetLady]

He was actually very attentive but then having a student and nurse in the room at the same time tends to induce better behaviour !

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

Sounds about right!

[Pixix]

Quick question…did he (or any of them!) prod you in about a dozen or more different places all over your body? This is the test for fibromyalgia (I’ve had it for 12-15 years), & recentky the rheumy decided to do the tests again. Then they give you a score, mine was sent each time to my gp. Most of my consultants have copied me, except the last rheumy, but found it in my notes. Do remember that you, like me, could have both! S x

[Body_bonkers in reply to Pixix]

Thanks Pixix and yes I have been prodded with no tenderness before or after steroids. I've recently completed a questionnaire too but did not meet the eligibility score on that either. I've been learning about this condition too and it really does not feel like me. Feel confident it is PMR and something else on top of perimenopause symptoms

[Pixix in reply to Body_bonkers]

I agree…as far as I’m aware that’s the standard test for fibro, & it should make it clear that you haven’t got it, I would think. I hope you get a diagnosis, I find it easier to get in when you know what you’ve got!! S x

[Gimme]

That's appalling treatment. "only if you are desperate"????? It's inhumane to expect people to live in pain. I am so sorry that you had to go through that invalidating experience. You have every right to be feeling angry and upset.

[Body_bonkers in reply to Gimme]

I was ready for ten rounds with Mike Tyson coming out of that consulting room Gimme !

[cranberryt]

I have also seen 3 rheumys who refuse to acknowledge PMR. I keep convincing my GPs to treat me. Unfortunately the first GP who diagnosed me retired. The second was a temp and still waiting for them to hire a replacement! It is so frustrating to not be heard or believed.

[Body_bonkers in reply to cranberryt]

Going to have the words 'I told you so' carved into my gravestone cranberryt ! Hope you get a decent replacement soon - rheumatologists seem to be as much a problem as the condition itself

[Poshcards]

It's ridiculous, my dear mum was diagnosed with PMR at age 80! by our rheumatology hospital and they kept her in for treatment for a week x

[seamaid in reply to Poshcards]

I was also 80, now 82 a climbing 😀