As every lupus sufferer knows we deal with so much pain daily that we become tollerant with lots of pain...ive been in a very dull progressive flair since a week ago today. I suffer with the organs and abdominal lining etc inflamation, serousitis..along with lupus, vasculitus, raynardsm hypermobility etc etc. Monday morning i had never felt the pain crushing me around my waist so bad in all my life, on arrival to A&E how i managed to sit calmy in a pain trance till i was seen i never know but as i moved to the cubicle to be seen, vomit was not the word, my heart rate was droping my blood presure droped bp. 69/54 the docs thought i was dieing my husband explained all about my lupus, as the doc had never had experience of it, people rushing around me in a panick...11 hrs later covered in wires lubes and nurses sat beside me ever time i moved i vomited, countless injection of morphine the doc was at a loss anf finally found my rhumy to my relief...as the a&e doc tried his best to calm my pain but it needed her experiance to help him....finally 36 hrs rolling around screaming and vomiting that nothing would stop it...finally she gave me a coctail, of steriods, morphine, atisickness, and bags of diff fluid, on diff drips i felt the magic relief...the reason i have typed my story is please, please, i wish every doctor could have training on lupus, we hurt differently to (normal people) as such we are very sick and need someone who knows how lupus works...i know i scared the a&e doc he even told me so, but when nurses askyou to help them be aware of lupus somethings wrong in the nhs where is their awareness...xxxxx home recovering now yet another week of sick..unpaid and worrying about my right with work, xx sending hugs around to all my fellow lupies.
Home now on steriods and my normal cocktail, till my bloods come back from london, before i start imuran..xx has anyone else had to have the blood test before starting(imuran) AZathrioprine i think its called..x
Also does anyone know where i could get an information book on, what my right with work are as ive been of sick 2 in a few weeks...And if theres information i could have on what rights they have regarding me..if thats makes sence x
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willowwag
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Dear WillowWag, what a very traumatic time for you, I am so sorry that you have been through so much.
First of all I would like to address your work related question, you are obviously very unwell at the moment, and worrying over work is stress you do not need. Have a read through this link, and see if any of the advice is applicable to yourself.
Regards education of all doctors and nurses within the NHS on Lupus, how wonderful would that be? It could certainly shorten the 'years' it takes doctors to diagnose us, that is not a criticism per se, but we all know knowledge of Lupus seems to lie solely with Rheumatologists who specialise in connective tissue/auto-immune problems.
For me, every opportunity I get, particularly when visiting other specialists, I give them the details for Lupus UK, and nicely try to persuade them to familiarise themselves with it, not just for me, but for other patients they may see, in a similar position to me. And I am here to tell you, it does work.
Hi karen and purpletop, the crushing pain is my lovely form of lupus the joy hay...i feel crusing like every rib front back and side is crushing inwards the pain is horrific,,if you ever have had gallstones multipy that by 100 and you on the right track of the pain...i feel the crushing but really what happens is all the organs in my abdo area liver, kidneys, intestines and lining swell and start inflaming hence they get bigger giving me the impression im being crushed, it the gets so tight in there is pushes every thats there up (giving the sickness)...i feel the same about the awareness and when i came home i gave my copy of lupus uk and the fact sheets to the nurses, i hope that the intrest they showed makes them really understand and if by passing on my information makes them more aware thats a great thing...karen thank you so much for you link, just taken my meds, cup of tea and pjs on and im going to have a look through your link x thank you both so much its knowing that theres other like myseld which stops me from being depressed i felt like a alien on a planet in hospital. God knows how people who have very rare condition feel...x hope you are both as well as you can be with lupus it is such a distructive desease....my rhymy told me this way of describing lupus....im like a puzzle i look complete on the outside all the pieces are put together pick me up and move me and you will see im really in pieces just trying to hold them all together...shes wounderfull and i cried at her explanation on how strong lupus patients are x
How awful this experience must of been for you and your husband, unfortunately we hear this story regarding doctors and nurses not knowing about lupus all to often. As a charity our main aims are to train and supply lupus specialist nurses all over the UK and to raise awareness so that everybody, as well as medical professions, are aware of the condition.
We've recently had a couple of booklets published which are self help guides to work and employment, if you would like i can happily send them both out to you, if you can just send me an email or a private message with your name and address i can pop them in the post.
If there is anything else i can do for you please do let me know.
Take care,
Hayley
LUPUS UK
Hi willowag,
What an awful experience, I am glad you are home and feeling better.
The blood test you needed is for TMPT ( I think ), basically you need this enzyme to be able to metabolise the Azothioprine.
Yeah i think thats the test, to see if my body will cope with it,,see what would i do without you all..got to admit im still feeling rotten and i am finaly admitting im not doing so good, daytime tv for me for now and the sofa, i kept saying to my husband sorry for being ill, he just said to me, i loved you before we got married, i loved you the day you became my wife, and i loved you yesterday, i love you today will always love you for the rest of my life...he said seeing me so ill reminded him that so easy those you love are not invinsable and the cherish them with all your heart. I know lupus patients familys and loved ones when the see us ill, it must be hard for them to seeing us ill. I hope that you all have someone who will look after you like my husband is for me...x
Willow wag...how awesome a hubby..I, too, am lucky to have one of those...he still sees me as the day we married....I was so tired last night I went to bed early. He always says love u. I know now to go to bed when I start getting really short and cranky....it's terrible. I can't always sit with my family and watch a movie. Upsetting to me...
Hi natura, sounds like we both are very lucky the have great husbands, my husband last year gave a bone marror donation to someone in the uk, when they asked are you sure you want to do it he said yes my wife is ill and if one day there was someone out there to help here, how could i ask for help if he was not willing to help someone himself,, the bone marrow worked and the gentleman he helped is doing well, mu husbands like my own little hero..xxx
I'm late to this thread but wanted to say: Willowwag, I think you're awesome for sharing such a horrible experience, but I'm really glad you did, because it's always useful to see how each of us deals with such things. Now I know (and it seems stupid to say I honestly might not have thought about it before you wrote this): next time I'm in A&E and not getting the right treatment, I should ask for a rheumatologist immediately. And I am also so glad you and Natura have husbands like mine I really hope you're beginning to feel a bit better now.
Hi carcrash, thank you so much for your post im still home recovering, i agree and have learnt that as soon as you go to A&E ask who ever looks after you do they know about lupus and ask for your team to come to see you. I was screaming in pain and my husband had to tell the doc what the give me morphineeeen! The doc said oh orimorph is the same, but nope he didnt listen and i was failing fast, he then decided it was time for the morphine, wish they would listen to us as we know what works...glad you to have a lovely husband to look after you xxx
Hope you are feeling better after such an horrendous experience. I too was an emergency out of the blue on Monday, it's frightening how quickly our health can change!. If you need further employment advice I would advise you to contact your local Citizen's Advice Bureau who have employment specialists and they will sort it out for you. Sending healing hugs.X
I'm having similar problem to you only not as severe but I'm struggling with strong chest pain that's inflammation of the heart and lung lining . It's suddenly flared strongly out of the blue and it's proving difficult to settle. They're upping the steroids to ease it!. I hope you have improved, thanks so much for asking and Take CareX
What a lovely husband you have W, your post nearly made me cry.
To answer your question on azathioprine, the test comes back fairly quickly and you take a dose of azathioprine related to your body weight if the test is OK. They then monitor it closely as your white cell counts and platelets can be affected. In my case my blood counts went down so they swapped me on to mercaptopurine, a related drug, which is working well. The drug that has really made a difference to me is hydroxychloroquine. Since I've been taking it my hair has stopped falling out, I don't ache so much and don't suffer from fatigue. Are you taking this?
You have had an awful experience. Good luck with everything.
Hi bitternwatcher, thank you for your reply i know im so glad to have him. I dont know what i would do without him..thank you so much for explaining the test yes im on hydroxychloroquine it helped a little bringing the flares to about 6 a month but they are back up to 3- 6 a week now with the crushing in agony pain and the sickness..i think this is why the imuran drug is being added i had a steriod injection 4 months ago which helped for about 5 weeks and then it all went crazy again..im on steriods oral now till the tests come bk fingers crossed i will get something to help at last it took 7 years to get diagnosed and been a lupus patient for just over a year x hugs
Hi Willowag, what a wonderful rheumy you have and you certainly are strong. I'm so glad that they managed to talk to your rheumy so you could get good treatment. It is so sad that lupus awareness is still not out there as it should be with doctors/nurses. I hope you are now having all the rest you need and deserve xx
I had a somewhat similar experience to you a few months back after being rushed to hospital with stomach pains. As I have had plenty of previous emergencies I have a sort of routine which involves taking all my numerous meds with me.
But the docs I met on the day in A&E seemed not to take account of my medical history and decided I should be no food at all whilst being observed. Nobody seemed to take responsibility for writing up my meds. So I didnt get any for about 18 hours in which time my bodies symptoms went into overdrive. It was no longer just pain in the stomach region but a full body flare.
Those that know about, and how to treat lupus are scarce. It obviously was not enough for me to have attended the same hospital previously several times and to obviously have in my notes that I was a patient with lupus and add ons. I had my hospital number with me but it didnt seem to make any difference.
Some rarer conditions such as lupus need specialist knowledge. But its not available in many A&Es as they deal with the most common reasons for admission and more complicated conditions can get missed. Particularly by junior staff. Putting pressure on specialist departments will only serve to make the problem worse in my opinion as it will make it more difficult for the the information flow to get to the front line doctors. We lupus patients will be the losers.
Hi overnight, sorry to hear you have also had to go to A&E its so hard trying to explain your condition isnt it. I have to say the A&E doc in my case asked me had i contacted my rhumy, when i said no he rung her himself for instruction on how best to treat me and she then came down. I really hope you are feeling better and wont have to have that experience again.
Hi all just wanted to update you with some information i learnt today, after a phone call to see how i was doing by my lupus nurse...i dont know if this will apply to others but its worth a go...she said if i ever go to A&E my accident and emergency work on this basis..when you check in at reception and give the person at the desk your problem, they may not be medicaly trained. So when we say we have lupus, she has no clue what lupus is we could be saying oh im turning into a zebra. We probubly would get the same response. Take a seat...and then we watch ever one go in with cuts, grazes and in my case a boy who ate raw chicken....(im very ill and you get to be seen before me!) well look here. I now know that in this case if i attend A&E I need state it like like. I have a autoimmune disease, which causes inflamation of my organs...I am on immunisupresive medication and i wish to be seen as a case of urgency before minor injurys.....she told me to say this because not so long ago sadley a lady with a long term health condition passed away after waiting 2 hrs in the A&E while minor injurys went before her and when she went into be seen her condition had become so severe. That she sadly passed....if i ever have to go there again im going to make sure that when i say lupus, they totally understand what im saying and i need urgent help..xxx something to keep in mind if your made to wait and you cant...xx
At my hospital i think they are now looking into how someone with a long term illness, has to wait to be seen in A&E hope your all with me in saying our condition should come before a boy who has eaten raw chicken playing on his ipad while im vomiting rolling in agony. I have learnt that with lupus you need to stand up for yourself and the care we deserve..until those in the medical profession learn and become more aware about our condition.
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