Rheumy review tomorrow. Displacement activity post

[whisperit]

I have my rheumy review tomorrow. I last saw him 4 months ago. Last night I had a sudden panic as I realised how much is at stake on a good outcome - and how little confidence I have in this happening.

I raised my especially problematic symptoms at the last appointment (extreme fatigue, tachycardia, heart pain, flushes and shaking) and to my amazement, he said they didn't sound like they were related to the immune disorder, or to my meds. He advised me to attend A&E if the chest pain persisted. Otherwise, I should simply continue on my current meds, tapering the steroid dose.

In the 4 months since, I have been blue lighted into A&E when my chest pain grew particularly bad. No evidence of an MI was found, but I was started on B blockers. The other symptoms I complained of have worsened and my GP has arranged a neurology referral and test for POTS. He also requested an expedited rheumatology appointment (to no effect)

Meanwhile, my Occupational Health Doctor has seen me and recommended I take ill health retirement. He's written to request a letter from my rheumy to back this up, but my rheumy has not yet responded. I go on to zero pay in 3 weeks' time.

My big fear for tomorrow is that 1. my rheumy will do the same as last time and offer no advice other than "carry on carrying on" and 2. I will respond by becoming hysterical, thus reinforcing the idea that this is all an exaggerated anxiety reaction.

I'm rambling. I have no question to ask. I will post again after the review. Hopefully without the hysteria. Mx

[Fennella02]

Hi whisperit. I read your post after putting mine up. Very similar rheumy approach. GP battling to get the best and hitting a brick wall. Sometimes a little hysteria can be very helpful . . ?

[whisperit in reply to Fennella02]

Hi Clare, I feel your pain! Yes, it's so frustrating. I know I am going to struggle to find a constructive way of reacting if he takes the same "wait and see" approach as he did last time. There are some good specialists; my respiratory consultant laid out all the test results and explained his reasoning and why he was plumping for one explanation over others. But my rheumy waits for a question before offering any information at all, and if you don't ask exactly the right question, you don't get the most useful answer. Like your "decline" letter - you get the feeling that they are guarding a precious treasure that only people who know the magic word are allowed to gaze upon...

[Fennella02 in reply to whisperit]

The rheumatology approach is very different from respiratory. My consultant is much the same and encourages a high degree of self medication at the first sign of a 'lung' flare to minimise damage - it's very empowering once accustomed to it. How does the SLE affect your lungs if you don't mind me asking?

[whisperit in reply to Fennella02]

I have a diagnosis of interstitial lung disease. On scans/x rays, you can see a sort of diffuse clouding (some areas more than others) which has retreated after treatment. Symptom-wise, it mainly just shortness of breath, which came on in a matter of a few weeks.

[Fennella02 in reply to whisperit]

It's very encouraging that your ILD has responded so well to treatment. I shall look out for your update tomorrow- good luck x

[PMRpro in reply to Fennella02]

And I bet if steroids are needed there is no fuss about you using the dose you NEED? Some rheumies are utterly paranoid about using the stuff.

TBH, I don't really care whether using the amount of pred I need might possibly shorten my life by a year or two - because I sure as hell don't want to spend any longer than I have to in the sort of pain I'll have without it.

[whisperit in reply to PMRpro]

yes, i started off (like most people I imagine) being keen to keep my steroid dose as low as possible. My respiratory specialist was happy to prescribe twice the dose my rheumy wanted. My lung problems got better surprisingly quickly, but now, after tapering right down, my quality of life has become so poor that "long term" risks are irrelevant to me. Similarly, "steady as we go" is also no good to me. One of my goals for the consultation is to get my rheumy to appreciate this.

[PMRpro in reply to whisperit]

I was at the OMERACT conference back in May - and one of the workshops was on corticosteroids. Many of the doctors believe that as soon as we take pred we feel back to normal, pretty much whatever the dose and whatever the need in rheumatology. It was an amazing 2 hour discussion - and a few of them went away with a very different view about how to help patients who need pred.

[Hidden in reply to whisperit]

Ach I so relate to this last line about magic that somehow eludes us. I have started to feel that ENTs must be made with an invisible rubber coating to deflect me from ever meeting one!

The only way is to sneak in between the cracks - seizing the moment when we can. You'll find cracks if you can hold your nerve. I'm a bit of a what comes round usually goes round kind of person.

After being told i had to stay on methotrexate or my joints would erode horribly, I then had "watch and wait" for a few years until finally a a third rheumy hit the jack pot wiith my lip biopsy result.

If you can contain the hysteria then you can always channel it back later to the rheumy in letter form? I have done this twice with doctors and it worked brilliantly on both occasions.

I've been a bit hysterical once with a maxilo facial surgeon and once with a gp. The price was too high for a while but even then I got my revenge in the form of proving them wrong. So hysteria isn't the end of the world.

Just see what comes of it and I hope you are very pleasantly surprised. If not you then tomorrow's another day. Hang in there and good luck!

[PMRpro]

You're in the UK? Get PALS involved and consider a complaint. Not good enough - and he's obviously a bit ignorant when it comes to autoimmune disorders. I've met that a few times - I'm left to wonder why some of them chose rheumatology but I also assume that is the expression of why: get the patient on something and tell them to carry on carrying on because there is no cure. Lots of doctors can't cope with that part of medicine, they feel they have failed - and in doing so, DO fail the patient left right and centre.

Maybe you'll be lucky tomorrow and get a different doctor (hope springs eternal). But take someone with you. I was nearly thrown out for aggressive behaviour when I was hysterical at the specialist's obtuse response to me. My husband was sitting there so they weren't too obnoxious about it - they were colleagues!

[whisperit in reply to PMRpro]

Good advice as ever. I will be taking my sister, who is a doctor. She has instructions to step in when she sees I'm losing it!

[PMRpro in reply to whisperit]

Sounds ideal!

[Fennella02 in reply to PMRpro]

PMRpro you're so right about doctors not coping with the feeling of not getting the positive results they aim for. My Rheumy is really dejected, wounded even, if I don't have enough positives to match or exceed the negatives. I even found myself reassuring HIM on one occasion!

I consider myself lucky to have my current Rheumy (compared with my first dreadful one, he's like a breath of fresh air) but his approach is very similar to that of whisperit . As for the 'carry on carrying on . . ' reference - so true.

[Lupiknits]

I can only send my best hopes for you whisperit. Taking your sister sounds an excellent idea. Gentle hug and very much thinking of you.

I have a similar post coming up x

It's happening far too much

[whisperit in reply to Lupiknits]

thanks lupiknits x

[EOLHPC]

Thinking of you this morning...that was a REALLY GREAT thread of discussion yesterday...I hope you're feeling "ok" about today. These contrasts between the way our consultants relate to us make navigating the health system even more like Alice in wonderland...the great thing is that we're going through this together, helping one another to get what we really need. You are vvvv well informed, and vvvv self aware. your relationship with your respiratory specialist is evidence that your probs with your rheumatologist are not your fault. you've got great advice from seriously experienced forum friends. Whatever happens today, hang in there...come back to us with your thoughts, regroup, set strategy & tactics...you will crack this

🍀😘🍀😘 coco