At what point do you need to go to hospital? - LUPUS UK


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At what point do you need to go to hospital?

Crazy_Cat_Woman profile image

Hello everyone, I have gone to A&E a few times when my pain levels in my back and stomach have gotten unbearable. The response has been very similar each time....go home and take more painkillers.

This week I have been so unwell. Unbearable pain in my mid back which wraps around to the front, migraine, vomiting, night sweats, shaking and extreme fatigue (with insomnia due to the pain). My joints are swollen and sore and I have sores on my legs, butt, chest, arms and neck. I have a noticeable swelling on my back at the bottom of my ribs (left side) where the pain is concentrated. I have been in bed since Friday. My pain medication is 30mg morphine capsules twice per day with additional oramorph as needed.

I don’t want to go to hospital to wait hours only to be told to go home and take more morphine. Surely, if I need so much painkiller there is something very wrong?

My GP can’t do much for me even although he is really super and supportive. I have an appointment with a different rheumatologist in my care team on the 8th August who specialises in vasculitis.

Hubby thinks that I should hold out for my rheumy appointment but I’m very worried about how I’ll I have become this week.

Does everyone have the same experience with A&E as me or can they be seen and investigated when they are very sick?

p.s. my local A&E is in a different city from my Rheumatology hospital.

Hope you are all faring better xxx


17 Replies

Can you contact your rheumatology team for advice, via rheumatology nurse/helpline or consultants secretary.

I think you need help but understand your concern about going to the emergency room. You are really suffering. The e.r. doctors only handle the immediate issues, so I fear they may tell you to up your medications. You have a lot of concerning symptoms. I think you need to see your GP today. They can make sure you don’t have an infection and see if your lupus is active. That is very important.

Keep us posted and feel better.


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On a positive note joint pain in lupus can come on suddenly and in different degrees...a couple of years ago I had sudden excruciating lower back pain and I could not even get off the toilet 🚽...

..but I eventually managed to more or less take a few, very slow, crutch aided steps to bed.

Locum GP was called and as I was in bed horizontally did a few leg joint tests but kept looking at his 💻 !

First time for me as a newish “loopy” who was utterly frightened. I thought I had a stress fracture/wedge fracture?! GP was totally lupus ignorant but did prescribe codeine sulphate prn 😊

Eventually the pain subsided!😊...after about a week.

I think it was a huge flare-up of the spinal nerves, muscles etc?

I’m ok now but still afraid of a return...😰 of such dreadful pain and immobility?

Lupus is so unpredictable.😰


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Hidden in reply to Hidden

Not just Lupus. This was pretty much how things started for me 8 years ago and inflammatory polyarthritis was initially diagnosed.

RA, Vasculitis, Sjögren’s, Lupus can all behave like this and I guess the usual way this kind of flare up is treated is with steroids - either orally, intramuscular or by infusion. Is this an option for you perhaps CCW?

In the old days people with RA etc were hospitalised for total bed rest and put on steroid infusions. But the bed rest is now thought to be counterproductive and the advice is “keep moving it or you’ll lose it” with all forms of arthritis apart from if you have septic arthritis. But how would we ever know or get this diagnosed if always told to go home and administer more morphine or whatever?

I think I did have septic arthritis once about 5 months after being misdiagnosed with RA and put straight on Methotrexate. I ended up gnawing a hole in my pillow the pain was so horrific in my wrist. Next day my pinky finger was sticking right out and my hand had changed shape. I saw a young GP who went white and gave me antibiotics to take immediately! My pinky finger has never gone back in despite physio etc.

This could have turned into sepsis I later learnt so it can be life threatening.

Nowadays we are often abandoned to manage things by ourselves. I have a similar situation with facial pain just now. If they think it’s dental then I have to see the emergency dentist who presumably can only either extract tooth and clean up or administer yet more antibiotics. Dentist says I do have simmering infections but it’s not dental abscess. Doctors day it must be dental as it’s my jaw and face. A&E would certainly send me straight home as a time waster despite swollen face.

Apparently it’s inflamed or infected salivary glands with swollen parotids and lymph nodes but I had to find this out for myself! X

I save all emergency department visits for only emergencies. So if I think I or a family member is internally bleeding, having a stroke, heart attack, PE, blunt force trauma or possible appendicitis. All other things we wait it out till our GP opens in the am or sometimes on weekends a walk in urgent care practice. I think urgent care is always last to be seen in emergency departments they prioritize emergency life threatening cases first. Can you see your GP today if they deem it an emergency they can prearrange an A&E admittance perhaps. Feel better soon. Xo

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Yes although I’m not nearly as unwell as you are but I do have left chest pain and swelling plus a few lumps - waiting for ultrasound but probably cysts the GP says.

I have twice been to A&E. Once last year about 7 hours after falling and fracturing my ribs I finally persuaded my hubby to take me in as was struggling to breathe. They looked slightly eye rolling because I clearly have “chronic” above my name and despite it being late afternoon still had no bed so examined my side while I had to stand. As soon as they saw the bruising and swelling the young dr immediately sent me for X-ray and couldn’t have been more pleasant and concerned.

However when I couldn’t lift my head to look at light or turn it for terrible pain in my left jaw up to my left eye the previous winter, an E&A consultant put me in a little consulting room by reception, where he examined me, asked a few questions and then told me I didn’t have meningitis but I do have a chronic condition therefore the place to ask is GP. I said that the GP couldn’t get an appointment for me that day so suggested I came to A&E instead given my symptoms. The dr said don’t bother to come to A&E as i’m a chronic patient and A&E is bad for us (or we are bad for them I think?) a nyway he thought it was neck muscle related head pain and I should go back to GP and request Diazepam. He was right.

But the point is that when it all gets too much as it has for you now - where do you go? Most places with rheumatology departments have dedicated beds for patients to be admitted to if very ill with a rheumatic disease.

Are you too far away from rheumy hospital to get their help today or could you phone and ask your rheumy what to do perhaps?

Hugs - sounds like you’re in a dreadful way. Xx


One issue is what to do after hours. In the U.S. most of us dread the emergency room experience too. But there are the « in between » things that need to be looked at on the weekend. At first I was negative about these urgent care centers that are popping up everywhere in the US. You know what? I think they are great. I went in for a quick urinalysis before a vacation (reassurance if nothing else) and once when I thought I may be sick from moldy bread. The wait was about five minutes. The staff was very nice. The place was clean. And if you need emergency care, they arrange for an ambulance. So I think it is a shame people are forced to go to the emergency room simply because there are no alternatives.

You shouldn’t have to choose between an e.r. visit and waiting in pain until Monday to see a doctor or, as is more likely the case, a physician’s assistant — perfectly suitly for the job.

My two cents 😅. You know the health care system problems makes me angry.


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Hidden in reply to KayHimm

Well I do agree. Here in UK we have 111 which is the NHS out of hours number. In Scotland it’s called NHS 24 and it’s for advice about whether this requires an urgent response or can’t wait until morning or Monday - but is not a medical emergency such as stroke or heart attack which would require us to dial 999.

It is good but it takes a while to get through and lots of “if your problem is dental then please press 2..” type of questions. When they answer the call centre as loads of questions including for your DOB and other questions to exclude emergencies. If you mention chest pain or paralysis then they simply send an Ambulence. If it’s not an emergency they will take the problem to a nurse or doctor who will respond after a while via the call responder to say that a doctor or nurse will phone you back or they may transfer you directly to one of these. Or they might decide it could still be an emergency and send paramedics round or ask you to come to your closest small injuries unit or nearest other GP out of hours service - or even send a GP to your home.

It works quite well I think. I did this in winter due to terrible headache that left me unable to even get up and go to the toilet without screaming pain. My husband phoned 111 and 2 paramedics came and sat with me for ages. One of their mum’s had Lupus and Sjögren’s so they totally got it although I kept asking them to go because even their voices hurt and their torches were awful! Finally they decided it was probably a migraine rather than an aneurism but told me I must go straight to the GP in the morning. I did and finally got diagnosed with cervicogenic headaches.

Hope this explains a bit more how our system works here. X

KayHimm profile image
KayHimm in reply to Hidden

Yes, that sounds like a good back up, for sure. But the niche these urgent care centers fill is when someone needs a strep test on a Saturday, or has a severe headache or needs treatment for a UTI or an ankle sprain. Apparently, they can get blood tests back fast. I think for a lot of patients with autoimmune disease — like one who just posted — it is a good option. I am not naive. It must somehow bring money in. Otherwise, these places would not exist in the U.S.!

You and I do like to stay informed about healthcare. Can you believe it is still a huge issue in our elections?! We just can’t get it right.


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Oh I know - and here it’s a post code lottery as to how easily we can access the out of hour provisions as well - not to mention having transport or someone who can take us there.

Yes big topic of great interest and deep concern for both of us - particularly if Brexit happens soon with a no deal looking increasingly possible. Your president is most keen to work with us on privatising UK healthcare! 😬🥴🤷🏼‍♀️

KayHimm profile image
KayHimm in reply to Hidden

Really?! Why am I surprised 😮? Fox News defines all policy here. It is probably not for discussion here but I do not think the answer in the US is government-sponsored health care. It will stifle the innovation that benefits the world. But there has to be universal health care. What is of note is that the chronically ill have an uphill battle here. It is horrendous.


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KayHimm in reply to Hidden

Ahah.. want the UK market! Interesting.

Can you get your husband to take you to the A&E where your rheumy/ vasculitis department is? Then they will call them down to A&E to assess you rather it being just an A&E dr who doesn’t really understand your disease. My GP often writes a letter explaining to take to A&E which sometimes speeds things up. I’ve always been admitted when I go to the hospital where my rheumy and other consultants are but if I go to my local one they are very kind but say why on earth has someone as complicated as you come here when we don’t have on call neurology/ rheumatology/ nephrology - so go to your rheumys hospital. They often admit me but they are then constantly emailing/ phoning rheumy for instructions so probably annoying for them all and better to go straight to where they know you?

Think we often confuse them but don’t feel you shouldn’t go if you feel awful and are in bad pain, lots of non chronically diseased people go for very minor things and what you’re suffering isn’t minor and deserves help x

No idea where you're based so this might not help

Royal Berkshire Reading is excellent

I was really ill with stomach psin/severe vomiting for several months variously diagnosed as an ulcer/hiatus hernia

Staying with friends in Reading - partner took me to Royal Berkshire AE

Diagnosed acute pancreatitis caused by gallstones

Six days in hospital then Emergency surgery for removal gallbladder all sorted on that front at least

Consultant could not belive GP missed the obvious

Think they do it all the time

Excellent care from all concerned.

My own GP misdiagnosed for 2years.

If you are near Royal Berkshire GO there!

Unfortunately My nearest A&E is Huddersfield. Reading would be a bit too far! Sounds like a good hospital though.

Hello everyone, thanks for all your lovely responses. I haven’t gone to A&E yet....just holed up in my room. I thought I was getting better this morning but the pain came back this afternoon and hit me like a train.

It’s interesting to hear that everyone is quite sceptical about getting help in the emergency room. I have tried 111 a few times but they inevitably send me up to A&E 🤷🏻‍♀️.

I can’t look at my screen for very long because of the nausea. Just wanted to say thank you. Big hugs to you all xxx

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