Last night I was reluctantly taken to a and e. I got neurological symptoms and my husband insisted we call 111, and they sent an ambulance, and paramedics said I should go in. I really didn't want to - in my experience a and e usually ends up with people saying 'nothing is wrong, ho away.' (Except sometimes.)
It was really hard. The fluorescent light was so hard all night, even when dimmed and with sunglasses. The dr said I was photophobic which I realise in retrospect isn't true at all - it's photosensitivity, I get a hot red rash and feel dreadful all day afterwards. And it's recent too - I never had this issue before these joint pains and face rash and heart/lung issues. It all came at once.
He saw on my file I have endocrine disorder and rheumatology referrals, and I said that earlier that day I had been tested for a lupus autoimmune thing, though no results yet. But even so, when the routine bloods were clear (as I expected), and I was going to leave, he said he would write to my gp and then said 'there is nothing wrong with you'.
That was distressing to hear. I mean, is he saying it's all in my head?? Luckily the consultants don't seem to think that so far, but it's still super distressing to have e a dr say that.
The whole experience has made me think I would love to ask your great experienced advice on things to do during any a and e event to make it less awful. Sunglasses for the lights, etc.
But also strategies for how to handle doctors who think you are eg just 'photophobic' and imagining all your pain, systemic body collapse, etc!
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Milkhappy
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I too have had the experience of ringing 111 and being railroaded into an A&E admission because the operator algorithm tells them to call an ambulance, even when I know that isn't the best option. A&E is not a good place when you have a flare of a chronic condition, as opposed to a life-threatening medical emergency or severe injury.
My coping ideas are
1. avoid when possible - out of hours GP services are usually preferable (if only because you don't have hours on a trolley)
2. always take a bottle of water, and something to nibble on (food or a comfort blanket)
3. always take a supply of any meds that might be handy - for me, that means painkillers, steroids and PPIs. Especially when an admission is possible - there is nothing worse than being at the mercy of the medical and nursing staff for your meds. I always keep a stash of my own when I am admitted.
4. Have realistic expectations. A&E is handy for two things - to make sure you're not actually dying and - as a bonus - getting updated bloods/ECGs etc. Do not expect any diagnostic insights or therapeutic breakthroughs. You are highly unlikely to be seen by a senior specialist and junior casualty docs are, bless their cotton socks, likely to make all sorts of faux pas when they try to interpret what is going on in a chronic condition.
So sorry to read you have just had a very distressing A&E visit and how it's affected your confidence and made you I'll!. I completely agree with Whisperit and have seen on the news recently that the out of hours 111 service has been criticised for sending too many patients to A&E by ambulance just because the computer software says so. Mind you paramedics who first come can spend a lot of time deciding whether to take you in so they too must have felt you should be checked over at hospital. Once there the attitude of doctors can be so different in a& e because there so used to throughput and not developing a relationship with you. They have to be tough to cope with the long hours and sights they see. I've had some good experiences of A&E and bad ones over the year that have left me feeling as you do. Not being believed is the hardest thing to overcome with the medical profession , I've achieved it by being consistent about symptoms. It can be a bruising experience that with time will fade and I'm heartened that you say your consultants do believe you have an immune illness. You hang onto that and given time your confidence will return. A tip I was given by my Rheumy was if I landed up in A&E on a weekday I could ask the doctors to contact him to discuss problem etc. I hope you feel better today . Are you due a Rheumy visit?. This might be speeded up as a result of your admission. Hope you feel better that your not alone. X
I second all that whisperit and misty14 have to say about 111. And I too dread going to A&E because of the lighting. But I always make it clear when they ask about allergies that I have a severe delayed reaction to the lights. Its a delay of about 6-12 hours but has previously caused organ damage. Once I ensure that has been documented on my allergy list they seem to take it pretty seriously.
If you'll allow me I'd like to try to explain a little about A&E lingo having working in many a department for more than a decade. It is my experience that in the pressurised environment that the doctors and nurses work in, they are never able to give the time to care for a patient that is needed. They aren't given the time for communication or compassion, however much they want to give 100% to each patient, they are usually only able to give 50-60% of what they want to. This is my professional experience.
Once a patients bloods, scans and tests cone back "normal" the pressure on them to discharge the patient to avoid a breach and get the next one in is immense.
I dont know what symptoms you had that took you to ED but they must have taken you seriously as they ran tests. Once the tests came back normal then they discharged you. Now, the doctors saying "there is nothing wrong with you" is the problem." What the doctors perhaps should have said was, "I have listened to your symptoms and completed appropriate tests, however those tests have come back as normal. There is nothing in your results to indicate that we need to keep you in hospital. However, I will write to your GP."
Just because a routine set of bloods cone back as normal in A&E, and trust me they won't run or even understand the funky bloods that a rheumatologist will do, doesnt mean there is nothing wrong with you. Its just a phrase that docs use to reassure patients, but I've seen it backfire so many times. The doctors may be a junior on rotation so only there for 6 months. Or they may be a consultant who has years of experience. Either way the job of an ED doc is to decide, is this patient in need of immediate hospital admission and treatment? And is their life in danger if I send them home. They are not going to be able to diagnose complex auto-immune disease in a four hour time frame on a set of bloods that will only involve a biochem and hematological screen.
So, to summarise. Let go of what the ED doc said. It was an ill thought out phrase. It sounds like you have a pending referral to the correct people who will know what tests need doing. Its not all in your head. A very wise physician said to me once, take a medical dictonary and when you have eliminated every possible diagnosis from A-Z, then and only then do you consider its in their head. And if that is the case, its still a medical problem just under psychiatry. I've never forgotten those words.
I come at this not only from a medical perspective, but I too have sat in ED with normal bloods being told that there is nothing wrong with me yet I've been in a full lupus flare. I stood up, SATs dropped to 60% and took a quick trip to resus. Auto-immune disease is so misunderstood in the medical profession so don't let the comments of an A&E doc play on your mind. Go and see what the doctor you've been referred to says, just prepare in advance for the appointment so you ask all the questions you want to and have a list of your symptoms at the ready.
Good luck and I hope you have managed to rest up. And don't worry, its not in your head.
Good luck.
Well I totally sympathise although my only experiences of A&E have been the opposite extreme and, once they have taken bloods and tested my pee with sceptical expressions on their faces, I've been kept in, put on very powerful IV antibiotics etc for presumed sepsis - only to have them eventually realise that it's not infection but systemic inflammation that is at play - combined with severe drug reactions .
I had this experience 4 times between 2013-16 and now I only ever contact 111 and try play it all down unless I'm seriously scared or get through to someone who knows about autoimmune diseases - but that's only happened the once! Most doctors and surgeons in A&E and on acute wards are out of their depth with the likes of us and we are either ignored or dismissed or else over medicated for the wrong thing!
If it's any consolation I have a friend who was air ambulanced from her island home to the Scottish mainland - only to be told by a junior doctor in A&E - where she waited on a trolley for hours and hours - that her paralysis of bladder and bowels and complete immobility was due to sciatica. She would have been flown home but the last plane had already gone so instead she was given MRI "just to be on safe side". The results were immediately shown to a neuro surgeon who said he had just 30 minutes to operate before this woman would become paraplegic for life! She had a condition called Cauda Equina and he managed to operate on this minutes before her spinal nerves were completely severed. I always think of this story now when people tell me about dismissive treatment they have been subjected to. A&E is usually no place for autoimmuners. Hope this and other comments make you feel less miserable about your lousy experience.
Such a BANG HEAD HERE moment, still makes me so annoyed. How many times.....listen to your patients, they don't come to ED because there's nothing on at the cinema!
Yep she was screaming Cauda Equina in her head too having read up and already suffered from sciatica for years! I'm suffering from sciatica badly myself just now (caused by severe lumbar degeneration) so very mindful of what to look for - based on her experience! X
I think what the A&E Doctor meant was there was nothing wrong with you 'at that time' that needed any immediate emergency treatment. He was probably a junior doctor & really busy & I'm afraid the days of doctors in A&E having the time to have the calming explanatory chats with patients that used to happen are not now possible as they are working against the clock.
I'm afraid I have no advice regarding light sensitivity but I do sympathise - it must be very difficult for you....especially when a doctor doesn't seem to understand. I hope the Consultant you are seeing is getting to the bottom of your health issues.
I recently went to A&E for the first time ever,...on a Saturday - with a broken arm & concussion after a fall, & I didn't see a doctor...ever......I'm no spring chicken- I was alone & after sitting in an almost empty department for over 2 hrs, waiting to see the triage nurse, I had to traipse along corridors struggling to carry my coat, umbrella & handbag (with one hand) to get an Xray ....when I arrived in a taxi the receptionist (a clerk not a nurse) looked at me & asked why did I think I needed to come to A&E ......when I said I thought I had broken a bone in my arm she said "What makes you think that?" To clarify I don't look like a mad Bag Lady.....I just said I'd had a fall & needed to make sure. Looking back I was an idiot!
I had gone to a minor injuries unit first, but they had no XRAY facility on weekends.....so said I should go to A&E...but they didn't offer any help at all as to how I should get there ..it was 12 miles away......so I called a taxi!
After more sitting around I was grudgingly told I had a fracture. I think as - although I was in pain I was not moaning out loud .....the nurse thought I was just being a fussy old woman. On reflection I was probably in shock as the next day I was diagnosed with concussion.
The final indignity was a plaster was applied by an HCA.....& I was told to come back on the Monday. I don't remember how I got home!
On the Sunday I phoned a doctor friend at a different hospital who was horrified & I was looked after by him after that, but not everybody has that option.
If I ever need emergency treatment again I will not be returning to that A&E!
Oh I do really feel for you and have had exactly the same experience recently. I think many other lupus sufferers have had the same, especially with neurological symptoms. If your bloods and other tests don't show anything abnormal then some doctors (especially a&e and neurologists!) seem to presume that we are then imagining it. In my case, if I'm having a flare up that is affecting any other part of my body it usually shows up in my blood with high ANA, low C3 and sometimes severe neutropenia BUT whenever I have neurological symptoms (loss of coordination, weakness, numbness and pins and needles in various limbs and cheek, cognitive difficulties etc) my blood tests seem more likely to be clear. I have read some academic research that suggests that this is often the case. I think if our bodies don't follow a typical pattern of symptoms/ damage (which is probably often with lupus!) and there aren't existing tests to confirm what we know we are feeling then we can be dismissed very easily. I was admitted by a really thorough young Dr who said something was definitely wrong but then had a really arrogant neurologist who told me I just wasn't trying hard enough in his tests and that I was just weak. He then said the neurology department had agreed I didn't even have proper lupus because my ANA was negative on both times I'd presented with neurological symptoms and seronegative people have more of a fibromyalgia condition and are just too focused on their pain and feelings in their bodies!! I don't think I have fibromyalgia but I know people who suffer with it dreadfully and felt quite offended he was so dismissive about something that causes many people severe problems. I had to explain that the months of steroid treatment (which I'd stopped the day before being admitted) for my big lupus flare several months ago was likely to have made my ANA temporarily negative but he hadn't heard of that and didn't believe me. I know it's hard but I think you just have to ignore the Dr who said this to you. You know your own body, you know you're not imagining it. How many lupus sufferers spent years pre-diagnosis going to the Drs for such varied complaints we all begin to feel like hypochondriacs until our blood results catch up with our symptoms? I think it's the same post diagnosis with neurological symptoms. If these Drs could experience for just a day what we all have to live with then they would probably try a little harder to understand and not make us feel like wimps, hypochondriacs or that it's all in our minds!
From my experience (and from my last GP's experience) neurologists are the worst for dismissing anything they can't explain or understand, including rheumatic diseases. I've been under two and both have said ridiculous stuff like "at least half of her symptoms are functional" and "you can't have too much wrong with you - you look too well!!". This despite me carrying a walking stick for my balance, having confirmed inflammatory arthritis, small vessel disease of the brain and paired bands in my spinal fluid confirming a systemic process is occurring 🙄😕🤷🏼♀️
I'm glad you're at home. My recent experiences with A &E have been poor but, as it has been pointed out, that once (the majority of patients) are identified as not in immediate danger, you are discharged. However, I know that this is not the case in every a&e dept.
Get plenty of rest, and try not to stress, this really does make flares worse!
Do keep in touch - you really worried me yesterday!
Hi, I sympathise with your experience in A&E - my last visit there was eight hours of absolute hell.
I just wanted to make a comment about the doctor using the term photophobic. This terminology is sometimes misunderstood. Being photophobic is not anything to do with a phobia, it means physical pain, sensitivity or discomfort caused by light. After suffering regular bouts of inflammation of the eyes (uveitis) I know only too well the extreme pain of photophobia. After years of repeated use of steroid eye drops I developed cataracts which were removed last year. I still have photophobia but it is far less painful now.
As for A&E doctors sending patients home because "there is nothing wrong" with them - this makes my blood boil. I suspect what they really mean is they haven't managed to uncover anything that comes within their emergency remit so you are fobbed off and sent back to your GP for them to decide what to do next. I understand the pressures our hospitals are under but it doesn't take extra resources for doctors to understand that patients who turn up at A&E are people who are in pain and sometimes a bit scared - the professionals need to take some lessons in communication.
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