Just flicking through my local paper, I started to read a "column" written by a local A&E doc.
This is apparently, one of the "most valuable lessons" she ever learned as a medical student :
She relates how she "was on a ward round with a senior doctor, She stopped us all at the foot of a patient's bed and asked us just to look and pronounce the person in it "sick" or "not sick" Tick the box. If you look too closely at a photograph you lose the impression of the whole and that's important in medicine. I have used this test, mostly subconsciously I think, ever since."
Oh dear. A judgemental doctor with no shades of grey. The scariest and worse kind in my experience. Amazing how a medical degree suddenly confers psychic powers and a divine right to simply diagnose-by-glance. Funny, but I've been told I was "not sick" just before my bowel perforated. I've been told I was "not sick" at the very same moment I was having a stroke. I was even told I was "not sick" by a succession of doctors watching my 10 year old little body waste away who were utterly confident they "just knew" and didn't need to run any tests.
I'll leave her with a little training from my consultant. "Don't ever be one of those doctors. Don't ever think you know better than your patient. If you can't find out what's wrong with them, then it's you who has failed. Don't blame them, don't judge them, blame yourself."
The next time I find myself in the adrenaline haze of flashing lights and an ambulance escort to A&E, I dearly hope doctor-judge-Judy won't be on shift.....
I thought this was just a problem with people like myself who are labelled as "Learning Disabled" - the GP not even bothering to look at my notes and the outstanding neurological referral before diagnosing migraine and telling me to suck a Disprin.
ReplyDeleteOh this is so true. I remember when my mother had a brain tumour her specialist came to the hospital and pronounced it was physiological due to the fact my dad had died earlier in the year. She had a 6 inch long tumour winding itself down from the stem of her brain down her spinal cord blocking all life supporting nerve signals !
ReplyDeletePhysician heal thyself
ReplyDeleteMy fiancée has had a scaphoid fracture a couple of times. Both times she was in incredible pain, even a week later with it in a cast. Okay, one of those times was probably because the cast was done badly, as it got better when they redid the cast in reaction to her turning up in massive pain, but it still hurt more than they expected it to. The reaction on several occasions was just "it doesn't hurt that much!" Come to think of it, the dentists have been saying that to her for years as well. I've never actually said it, but on so many occasions I've wanted to say "excuse me, it's her pain, she knows how bad it is".
ReplyDeleteNow she's been diagnosed with fibromyalgia, and AIUI, that may well explain those situations. However, I'd've thought the that situations involving real doctors in this ought to have caused some curiosity or investigation, rather than just contradicting her about how much pain she was in.
My times in A&E with bad pain have always been migraines (as it's turned out), and the odd thing is that they don't contradict you about head pain...
I think she may be either expressing herself badly, or hadn't really taken the lesson as it was meant. There is a 'look' to people who are acutely, life-threateningly ill; on a ward, these people are your highest priority (obviously). Not a method of denying illness, but rather of prioritising in a busy environment.
ReplyDeleteIt is still much, much better to approach this systematically (because some people who are acutely ill won't have that 'look') - in Scotland we use something called a SEWS score (http://www.scotland.gov.uk/Publications/2007/10/23093529/21) to spot people who are becoming acutely ill, or who are declining. Before things like this were introduced (ie probably when this person was a student) then you might be much more reliant on the general appearance of illness.
Neither the systematic SEWS or the 'looks sick' are supposed to say that other people on the ward are not ill; more that you want to keep the closest eye on the sickest, the ones most likely to die or seriously deteriorate during your shift.
I had two doctors dismiss my reports of sunken eyes and flaccid skin as vain worrying about my looks. Turned out my PTSD had resulted in me sweating all the electrolytes out of my body, as I found out soon after, when I nearly died of dehydration. Nice.
ReplyDeleteI like the advice from Sue's consultant.
Dear Sam
ReplyDeleteWithout wanting to sound like a bendy evangelist (a bendyvangelist?), if your fiancee is suffering at the dentist she may be resistant to local anaesthetic, and if she's resistant to local anaesthetic it may well be due to a connective tissue disorder.
If this hasn't been looked into it would be good to push it with doctors, as one can get surprisingly useful treatment for connective tissue disorders if one's lucky.
misspiggy: no worries, you're not the first to mention it :) she's reluctant to ask about more stuff having just got the fibro diagnosis; apparently, I can bring it up when she sees the doctor - and at times when that's happened in the past I ended up feeling like an idiot because she's visibly uncomfortable at the mention and doesn't actively agree with anything I'm saying.
ReplyDeleteLocal anaesthetics at the dentist - they've never made her completely numb, and the furthest they've got is with 2-3 times the normal amount. We tell dentists that she seems a bit resistant to it and they use extra, but she doesn't tell them that it still hurts any more because it never does any good. She also gets very little benefit from codeine (but more from dihydrocodeine). She has had some joint-ish (possibly) issues in hands and feet and fingers, with her popping her fingers from time to time (in the sense of grabbing the distal end and pulling on it firmly, at which point it 'pops' back into place). She has very fair, smooth, soft skin except where there are odd rashes. She has odd hair that doesn't fall out as much as it generally does, and has little to no split ends (not sure if that's related, but it's one of her oddities - the other bits in this list relate to things I've read about Ehlers-Danlos). When she put on a moderate amount of weight moderately quickly, she got stretch marks that are still there, a couple of years later. The fronts of her knees look odd (to her at least) a bit like odd scarring, which she puts down to when she had a rash on them as a teenager. There may be other factors that link as well.
So yeah, I think she should mention it. She's reluctant. I tried mentioning the potential complications that can be avoided with treatment...
Military first aid for battle casualties teaches always look at the quiet ones first, if you have the energy to scream and shout you can wait a minute or two those close to death don't have that energy or time. I've often thought that was good advice.
ReplyDeletePeter - This is very good advice!! Also I WISH they would train docs to understand that those of us that live in chronic but acute pain and have a huge tolerance to symptoms might not be as "OK" as we look - hence the nearly dying often when docs say I'm "fine"
ReplyDeleteYep. This is me to a T. Struggled with joint pain and fatigue for 5 years now - my inflammatory markers are normal so apparently there's probably nothing wrong. All in my head. Rheumatologist sees me once a year, and the endocrinologist shrugged me off despite there being clear problems with my thyroid. But the pain is all in my head. I'm 24 and I walk with a cane some days, it hurts so much, but I'm just a hypochondriac...
ReplyDeleteI was undiagnosed for 6 yrs little ershin. Don't give up. If you have pain, it's very unlikely to be "all in your head"
ReplyDeleteAsk for a referral to a specialist centre for joint pain.
To be fair, psychogenic causes are very plausible. Not to say it's likely in any specific case, but it's possible. The problem is that doctors largely understand that fact, but that's the limit of their knowledge. Somatising disorder, for instance, is fairly well documented, and has some (not terribly available) well-defined courses of treatment, but armed with the knowledge that it exists, doctors don't actually handle it properly. Firstly, like fibro and ME/CFS, it's a diagnosis of exclusion - you need to exclude plausible physical causes. Secondly, it doesn't mean the person should just "buck up", or that it's "all in their head" - it means the symptoms are very real, and you can't "think them away".
ReplyDeleteAlso, although it's well-documented and explained, at take some issue with some of the psychological theories about it. Being scared of being well, for instance, as being ill allows us to avoid responsibility - like people who are ill in our society really get to avoid responsibility. Oh yeah, can you tell it's been suggested for me?
@Peter
ReplyDeleteGod, yeah, that's true, isn't it? I think ambulance crews are told that re car accidents as well. Very pertinent point.
Trying to keep very still trying not to scream in pain or make a fuss…failing…SCREEEEEEEAAAAMMMMSSS oh no they going away…come back.
ReplyDeleteI think I’m going to have the “but you don’t look ill” and “it’s all in the mind” inscribed on my gravestone.
Dear Sam
ReplyDeleteSorry to hijack comment thread slightly (apologies Sue!) but you have just described me. I spent 8 years in the fibromyalgia pot with no help other than painkillers, plus physio that made things worse. Only when I tentatively mentioned hypermobility to my GP did a huge range of additional treatment open up to me. I now have a diagnosis of Ehlers Danlos Syndrome Type III, with accompanying months of specialist physio, heart, dentistry, gastro, pain management and gynae support. This has kept me working and more or less functional. As Sue posted earlier, the NHS can be fantastic and I am so grateful.
I know it's none of my business, and I know it can be terrifying to seek new treatment or diagnosis because it's exhausting and because of fear that it won't work. But I would strongly suggest getting seen at UCH or Leeds. I wouldn't initially recommend going with a local rheumatologist that thinks they know about EDS/hypermobility. Prof Grahame at UCH is fantastic but he may not be working much longer. Most physios in decent hospitals are also wonderful when they know they are dealing with hypermobility, and can assess for it really well.
All the best!
If she's hypermobile at all (which the finger thing sounds like to me, but I'm no expert), it's pretty minor. I figure if it's EDS, it's 'classic' type, the one with a mix of mild-to-moderate hypermobile and vascular symptoms. She's never had any extra flexibility in any joint, just occasional 'oddness' in joints that pulling on them fixes, and that sounded utterly alien to me. The skin is a sign though, from what I've read. The one thing I do wonder - is there any alternative they can do to get around the local anaesthetic resistance? That might persuade her, the idea of not having torture any time she has dental work done...
ReplyDeleteOh, also, neither of those locations sounds terribly easy to go to from Lancaster. Well, Leeds has a direct line, but we can't take it because we'd be unable to stand up at the other end, due to both having positional vertigo issues and the line being incredibly rough. I think it's that line, anyway...
re teeth - apparently yes, I'm currently waiting to find out!
ReplyDeletePositional vertigo - another similarity. Joint flexibility is often misleading and increasingly not being used as the main diagnosis tool.
OK I promise I'll stop now!
Don't stop misspiggy - It's fine and interesting. I would say that Sam, If you get a chance to get to Leeds take it!! Get there however you can! I travel 100s of miles for my care, but surely it's much more important to try to get well? Or at least to be better treated than now?
ReplyDelete'Joint flexibility is often misleading and increasingly not being used as the main diagnosis tool.'
ReplyDeleteThis. Mainly because us bendies have a tendency to get less bendy as we get older. You might want to ask her to think back on her childhood and whether or not she was doing 'party tricks' or being told she was sitting/sleeping in a 'weird' position. Or if she was particularly clumsy, especially if she continued being clumsy when trying her hardest to be careful (I was terrible at that). Poor proprioception is usually a good marker.