I became very ill over the weekend and couldn’t keep any of my medications down. By Sunday night I was screaming in pain (joints and lower back) and my husband called an ambulance. The paramedics were absolutely superb, they even asked me if I had a lupus plan! I don’t have a lupus plan but I want one now!!
I was treated in A&E with morphine intravenously and prednisone and then they admitted me. The A&E nurses and doctor were very good. They got the pain under control and really looked after us well.
I was taken up to the medical assessment ward at about 6am and that’s where things just went wrong. Instead of letting me be and rest after such an awful night of pain, I had nurses in and out constantly checking my blood pressure, weight, swabs for mrsa, endless questions that I’d already been through in A&E.....
The ward consultant came in at 10 am pronounced that I was in a flare and that I should increase my regular oramorph medication with a view to increasing my regular zomorph dose. He told me he would only continue the steroids if my inflammation markers were up. My CRP is always normal - like it is in lot of lupus patients....so I didn’t hold out much hope. I told him that the problem was that I hadn’t been able to keep any medicine down and he said they would keep an eye on me and see how things went.
My husband had fortunately brought my dosette box to A&E so I was allowed to take my usual meds. I didn’t have any oromorph though.
I was still in a lot of pain and despite being told to increase my morphine dose and asking for pain relief four times, I was only prescribed two paracetamol.
At 2pm I was told I had been discharged and was turfed out of the ward into a chair in the discharge ward. I sat there crying in pain until my husband came to pick me up. We then had to wait an hour for the medication they had prescribed me - which turned out to be an anti sickness medication.
My discharge letter asks my GP to increase my morphine during the flare and review the need for further anti-sickness pills.
I just don’t think that hospitals are set up for lupus patients. In the discharge ward I was sat next to four very sparky ladies (none of them younger than 70) who were chatting happily about how nice a stay they’d had in the hospital and how lovely all the nurses were. They had a rep from Age UK there fetching them tea and biscuits and making sure they were getting home safely and that they had all the care they needed when they got there. How very different to my sorry situation!
Was I just unlucky this time or is this the usual sort of treatment lupus patients should expect when admitted to hospital?
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Oh no how terrible this all sounds - I’m so sorry!
Also your experience is very familiar to me. I once had four long weeks in and out of the acute ward of my old island hospital in 2015.
Two surgeons i was under got everything wrong and the nephrology consultant was brilliant but concluded privately (in my ear) that I had rare autoimmune disease which required a much larger hospital serving a much larger population - doctors and nurses who can understand autoimmune diseases.
During one of these week long stays there was a woman in her early 60s with Scleroderma, Sjögren’s and Lupus. She had chosen to come up and live on the island with her new husband so that she could be near her daughter and young grandchildren. She had been a theatre nurse all her working life and had a heart attack in her 40s and was on the acute ward recovering from double pneumonia. She was very unimpressed by the standard of care she was receiving for her rheumatic diseases, particularly Scleroderma. Luckily the nephrologist was on hand for both of us but even she was out of her depth. I learnt from a friend that the woman sadly died the following year from a pulmonary embolism.
Two of nurses were absolutely horrible and refused me IV paracetamol over the weekend - saying “people like you with chronic conditions would just get themselves admitted so you can get stronger pain meds if we agree to give you this!” ????? So I cried with pain until a junior doctor came and overruled her. I had only reluctantly agreed to stay under observation for a long weekend if they allowed me to have proper pain medication while there. My CRP was over 100 and ESR was 90 when admitted. By the time I left my CRP was 7 but my ESR was still over 90. They were baffled but they shouldn’t have been as I’d been diagnosed with RA and suspected Vasculitis. No rheumatology input at all apart from when the nephrologist phoned him first thing on Monday morning and requested that he view my bloods online from the mainland.
This woman and I talked a bit about ourselves as we were otherwise surrounded by elderly people with lots of visiting families or self harmers ie one suicide attempt, 2 heavy duty alcoholics and an old woman who kept screaming and vomiting but, as soon as the nurses were out of sight she would gulp down a Pepsi from small cans in her drawer! It honestly was a total nightmare of a long weekend and I ended up there more as an unpaid minder and social worker rolled into one rather than a patient under ob!
The next week I spent on that same ward a few months later I was treated like a nuisance despite having a post op wound sepsis. Everyone else in my bay was elderly, 2 with dementia, one with suspected stroke. They used my age (52) against me so I had my drip stand taken away as there was a shortage - my drip clipped to my curtain rail instead despite the fact that I had diarrhoea and an open wound in my abdomen! They said I was able bodied enough to unclip my drip myself and dash to the toilet when I needed to!?
Fearful for my safety I discharged myself against the surgeon’s wishes, back to the care of district nurses visiting me at home.
I’ve never stayed in new larger university hospital overnight since this despite 2 paramedic call outs with lovely paramedics, who seemed to know more about my autoimmune mix than any of the general doctors or nurses down here or back up north. In fact they actually knew more than my CTD dr or rheumy about Sjögren’s as one of their mum’s had this and Lupus - advised me to avoid A&E and hospital admissions like the plague! They sat on my bed and chatted quietly to me for ages using torches in the dark, monitoring my heart, oxygen and BP - until I eventually fell asleep.
I kept telling them there were emergencies for them to attend but they were adamant that I needed them more!
I would say I have full blown hospital phobia now and weather all sorts of pain flares and concerning symptoms rather than ever allow myself to be admitted to hospital again! An elderly friend of ours was left in my new hospital for 3 hours on the commode so I’m not reassured! Xx
I was in a room on my own this time so I didn’t have the joys of being with a lot of others. I’ve been in and out of hospital enough times to know what it’s like though!! I did smile when you described the old biddie gulping down Pepsi when the nurses weren’t looking!!
I just don’t know what we are supposed to do when in a really bad flare situation. Are we just supposed to sit at home, take more pain meds than we are prescribed and hope for the best??
We’ve never called an ambulance before but I was just so bad on Sunday night and couldn’t keep anything down to help the pain. The paramedics certainly didn’t think I was wasting their time, nor did the A&E staff.
It was only on the ward that I was treated like a time-wasting, bed-hogging, chronic illness leper. The whole experience was just so humiliating and sad.
Is nobody interested in why I am in so much pain? Shouldn’t they have at least tried to find out why I couldn’t keep my medication down or watched me for 24 hours to see that I was going to be alright on the anti-sickness medication.
Leaving hospital yesterday I really felt “what’s the point of going on” if there is just no relief or help?
Yes it really does nothing for the old mPTSD this sort of experience I agree. And as for the carrying on bit - I think it's scares us deeply when we are made to feel so uncared for. This is how my GP practice makes me feel. Even when i go in for blood tests I'm made to feel a bit as if I'm wasting time as they can never find GP request on their system. Even when I went to A&E with my rib fracture they didn't lie me down to examine - i had to stand up and there seemed to be a "chronic" label over my head so the young doctor got a real shock when he saw a day old haematoma the size of a football staring out at him! And no one has ever asked me how I'd had such a bad fall.
Still at least paramedics were good to both of us so there is hope. I'm guessing every patient who isn't in for advanced cancer or acute organ failure or stroke is made to feel like a numpty of a bed blocker these days.
I don't have advice on pain meds as I can't tolerate any apart from Diazepam and Paracetamol. I just pace the floor or writhe, shout at my poor husband and think of my 3 lovely young adult sons and seeing them find partners, have children and choose careers and I think of walking on a beautiful beach in the evening sunshine and of lovely things. Or if I'm beyond thinking of any of these I think of how I would express this experience as an artist. I guess I'm lucky for being able to achieve some mindfulness most of the time as this is almost all I have. xxxx
I do think I would benefit from the sort of mindfulness that you describe TT. I’m just a negative stress-ball though! When I try to think peaceful thoughts I inevitably end up thinking about all the things I will never be able to do or achieve. I am only 42 and I feel like my best years are behind me. Uuugh!
I really like art too - although I am no artist. I envy you! I like to illustrate my Lupus Blog. I also make cards and mess around with other crafty type things. It makes me feel useful when I create things.
I think I mentioned before that I am also Scottish (from Perth) but moved down south 8 years ago.
Sounds exactly the way my sister was treated over the last two years! What is wrong with these medical people.
There is a Facebook Group called Cure the NHS Hull and East Yorkshire, they have made a map to pinpoint Problematic treatment by the NHS. I urge you to get in touch with Lisa, the admin, to have your problem noted on the map. It doesn’t matter where you live in the UK.
I've had SLE for 41 years and the only department of a hospital that Ive ever - NOT been bullied and stigmatized is a Renal unit. The illness has effected multiple other bits of me.
The only other time I was treated dignity was when I broke many bones in a car accident. That was so simple, so easy - it's just not funny. I didn't have to explain myself - grovel or beg for my life.
Such terrible treatment. Much of this stems from the strains our systems are under. There was a day when hospitals actually « cared » for a patient like you. Now they just rule out infection, certain lupus complications and send you home in pain. It is surprising your rheumatologist wasn’t called.
Thank you KayHimm... Yes, I was surprised they didn’t want to get my Rheumy involved. I tried to give the ward doctor my Rheumy’s details but he wasn’t interested because it was a different hospital. 🤷🏻♀️
They just weren’t at all concerned about what was wrong with me and made it very clear that they wanted their bed back....
OMG. I have had a bad experience in hospital last year and thought it was just me, I was supposed to be a day surgery patient but ended up being shoved into a ward with no explanation or by my leave after having my gallbladder removed.
The surgeon, theatre team and post op staff were brilliant.
The problem was the ward, lead by one nurse and 6-8 " care assistant's" no idea what they were doing and at first I thought the so called " care assistant" who seemed to be assigned to me might have had some sort of training but no. She first tried to do my OBs., 3 times on one side with much huffing and puffing with both the BP & temp but obviously didn't get the results she wanted so tried the other side same thing happened but suddenly she was happy, god knows what she wrote in the notes.
I expected to be in pain but the paracetamol I was being given wasn't cutting it as the morning dragged on and I had to ask for it as well. By midday the pain was so bad I asked for some pain relief but was told that it was 45 minutes to soon. 1 and a half hours later the patient in the next bed could see how I was and knew that I was still waiting for the pain relief so she went to the nurses station to remind them. "Care assistant" came back not only with the paracetamol but the strong painkiller she should have given me first thing in the morning.
The whole ward and treatment was so bad I have come to the point of never wanting to be in hospital ever again. At least at home I will have the peace and quiet and can sort out my own pain relief.
As soon as the strong painkiller started to work I was on the phone to hubby to get me, up dressed and ready standing by the nurses station and talking to them. They didn't have a clue that I was not only dressed but had my bag with me ready to go. The penny still didn't drop when hubby appeared and asked if I was ready, I said goodbye to them and walked out the door.
Never ever again will they get me to stay again and that's not the half of the total nightmare. I was literally traumatized by the whole thing and upset for months after.
That does sound like a really bad experience Boudica1. I’m not surprised that you don’t want to go back anytime soon.
I totally agree with what you say regarding having control of your medications. It’s just awful being reliant on others for it. Especially when you are in such terrible pain.
Ughhh! I’m so glad to be back home with my husband and our cats. They look after me so much better!
I know just how miserable being in constant pain can be. But you are not in a good position to be quite so dependent on morphine.
Over time it will weaken your immune response and possibly shorten your life.
It is sometimes possible to reduce inflammation and therefore pain by reducing your intake of foods that are deemed inflammatory. High on the list are sweetened foods and wheat containing foods. Also dairy products in some people.
Increasing vegetable intake is considered anti inflammatory.
These are just some hints that may assist you in the longer term.
Thank you overnight. I have tried a variety of diets over the past two years (including vegetarian) but haven’t been able to pinpoint any particular problem food group(s). I even had one of those allergy test things done at a herbalist/health food place but it didn’t flag anything of note. I am terribly allergic to fish and have to watch for that as an ingredient in sauces etc.
As for the morphine, I completely understand your concern about becoming over-reliant on opiates; however, I’m not being offered any other pain management alternatives at the moment. Things will hopefully change for the better next month when I start at the pain clinic.
I don’t think any of us like being on medication but c’est la vie..... 😢
I was just hoping to help you to find a way to step back a bit.
What will the poor cats do without you?
Shame about the fish allergies cos fish oil is meant to be anti inflammatory. I was imagining you tucking into a sardine salad with your cat trying to pinch a morsel or two.
A long list of ‘do’ foods and ‘don’t’ foods. The core of pineapple is also very good for taking inflammation down. I throw pineapple chunks along with their core (from fresh pineapple) in my smoothies. Salmon is another good anti-inflammatory that I try to eat several times a week. But I agree. Unfortunately the body becomes dependent on any medications. There is a time and a place for meds, that has to be up to the individual, but, though it may take a little longer, healing yourself through diet comes without side effects and is a safer alternative. My mom became so dependent on meds, and meds for the side effects of meds, and eventually nothing was working for her. She had the senior care facility she lived in take her off everything all at once. They stopped her meds at 4pm and she died that very night in her sleep. I think that is one of the reasons that I am terrified of becoming dependent on medications. But again, I respect that it’s an individual decision, and each person has to do what they feel is right for them. And I will always pray for the best for everyone. It is a miserable thing to go through the pain, fatigue, rashes, hair loss, etc., etc. 🙏My best to you all in your journeys.
I am in a dilemma too, as I was in A&E x 2 & omitted for a day & released still not knowing the cause of my nausea, etc. I didn't sleep for days & the noise & disturbances were neverending, I left exhausted, but at last re-hydrated....
As I am no better this week I am thinking of going back in with the hope they will give me the test my gp said I need which is to see what's going on with my digestive system & why i can't eat much without wanting to purge it all, nausea & pain...
Your experience just reminds me of mine & will I just be wasting my limited energy by going there again.... Will contact gp office & live in hope ml
Oh Maggielee, I’m sorry you have had a similar bad experience.
I think our best bet is to be treated as outpatients. My recent experience just showed me how ill equipped we are in the UK to handle chronic illness in our hospitals. It seems that our experience is shared by many others on the forum too.
Which test are you waiting for? I had a horrible pattern of long periods of nausea and vomiting with stomach pain throughout the years prior to my lupus diagnosis. I would have long periods (months) of stomach pain with frequent nausea, vomiting or diarrhoea and that would mysteriously self-resolve.
I had lots of tests (some several times over!) but nothing was ever diagnosed - I got the inevitable IBS diagnosis in the end. Looking back now I firmly believe that these episodes of severe illness were just part and parcel of my autoimmune disease history.
Are you managing to keep anything down at the moment? I was given Cyclizine as an anti sickness medication and it seems to be working (fingers crossed). Perhaps you could try asking the GP for something similar?
Hi CC thanks for letting me know your experience. I am I believe waiting for a colonoscopy...had some recording on the phone for an appt next week at the hospital will ck tomorrow to see if it was for the test..hoping so.
Ah food, a love hate relationship sadly... I skipped food most of the day & then had some avocado & little pieces of lovely chicken...seemed ok so went for chicken soup...& took some of many meds ...waiting now to see what happens, already have the upper abdominal pain, not severe yet...
I was given at the hospital Cyclizine & have used it as needed...couldn't hold it down last night... Will talk to gp about it tomorrow...
Will hope to hold out going back into hospital via A&E...just so difficult to eat now without discomfort 😢...
Do you regularly take the cyclizine ?
Hoping they do not come up with IBS as a reason... It must be related to something else....
Hello Crazy-Cat, sorry to hear about your experience. I just wanted to add about ‘the plan’. When I had a flare last summer and ended up in A&E followed by visiting GP a week later he asked me what ‘my plan’ was. When I said I didn’t have one he stressed that the Rheumy consultant should manage this. So.... a month later with said consultant I asked him what the plan was, he looked nonplussed and said there isn’t one as such. Then a few weeks later I was copied into a letter he sent to my GP with ‘The Plan’ listed should I flare because of my joints or because of my lung condition.... 😊
My husband and I thought we might bring up ‘the plan’ when we go in to see the Rheumatology nurse next week. They are doing a 3 month review of my MTX medication.
A flare plan is such a sensible and practical idea. It would prevent so much faffing around and confusion. Why isn’t it standard practice for all lupus patients to be given one? Said plan could then be reviewed every six months to take into account any new symptoms or treatment.
Hello CCW, I am SO sorry to read what you have been through!!!! Based on my personal experience and research knowledge, I can confirm that you have been through a classic lupus pain crisis. Although there is widespread ignorance about the severity of this pain, one case that I read about was mistaken for melingitis (also in a woman who generally have higher pain thresholds). One of the hallmarks of severe pain for paramedics and nurses, is that it triggers nausea. Often the vomiting is so bad and continuous in a lupus pain crisis that it is impossible to take any kind of medication, especially crucial corticosteroids, orally. Which is of course exactly where you found yourself. Paracetamol tablets in my experience and anecdotally simply do not touch the sides in such a crisis...higher doses of paracetamol in a drip and morphine is widely used. Prochloroperazine in dissolvable tablets put just against the gums is one form against the nausea. If this is not enough, 12.5mg can be injected. Morphine, oramorph, for chronic pain in oral solution is prescribed, as you know to prevent lupus pain getting out of control, or I have had a higher dose injected by an emergency doctor at the height of a pain crisis. Once the crisis hits however, morphine suppositories are no longer available in this country but GPs may prescribe voltarol and paracetamol suppositories combined as they do for women recovering from c-Sections and hysterectomies. I used to have district nurses come out to inject me with prochloroperazine in crises to prevent me having to go into hospital and be put on drips. However, my local nurses were "reorganised" so I got the nurses at my local GPs surgery to teach me (on an orange) how to self inject into a thigh (after a chat and permission from my great GP) which I now do when my pain gets out of control. I am a big advocate of breathwork and mindfulness and teach them in my work, but lupus is a very challenging condition and sometimes it will spiral out of control. Again, I am so sorry that you have been through so much pain and been so shockingly treated on the ward. Hope that working with your GP and your rheumatologist that you can develop a better system for dealing with your severe pain. Long post I know, but just in case there is something useful here for you. With my very best wishes Lily
Dear CCW, I am so sorry that my first post here in a very long while, resonates so much to my experience over the last few months, I have been very unwell, with several admissions, and all bar one, have been extremely traumatic, so I empathise.
All my admissions were via Ambulance, 6 in total since September, complicated respiratory issues, and all my local hospital and one in my old home town, the latter of which, was a better experience.
All is fine with paramedics, and up to a point A & E, it is when you get to the wards, it all goes pear shaped in my experience, there seems to be no joined up thinking, communication between (my) relevant Consultants and me as the patient, which resulted recently with me being denied regular medications, little to no consistent pain relief, which leads to me feeling vulnerable and scared, which led to me discharging myself back to the the care of my GP, and which is where I am being looked after, while a care package is now in place.
Until I get before my usual specialists, unless my life is on the line, I refuse to go A & E, but that is proving difficult as my appointment keep being cancelled, and moved further down the calendar.
As TT stated, mPTSD is an issue I suffer from badly, and this last 8 months, have done nothing to improve this. I had a surgery, privately on my spine recently, and the care was outstanding, which really irks me off, as this is the care we should all be getting on the NHS, but even basic needs are not being met, medications are important, and pain relief key, yet I was denied, and when they did come, usually hours after asking, by that time I was in a perilous condition with vomiting and high temperature. Not good enough.
I am not one to bash our precious NHS, but at times it is hard to be positive with it, I am exhausted and jaded at the barrage of excuses, you are a complex patient, yada yada, not my problem, and yet here we all are with tales of woe.
I do not know what the answer is for us chronic complex patients is, I am lucky in a way I was able to deal with the spine issue privately, but I cannot keep doing private consultations and paying for expensive scans.
Sorry to sound negative, I have had a terrible time over several months, and am struggling to put it behind me in my recovery. I feel very let down by so very many people. Thank goodness for my excellent GP.
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