My main problems at the moment is the progressive SOB,palpitations, nausea , itching and pain.. I have no idea if they will listen but I have ran out of options currently. And I will keep over and do feel really really wrong.
How can I get heard and not passed off. How will I get through the door.
Reading healthunlocked.com/lupusuk/.....
Think you have done right thing.
Hoping and praying all goes well. Take care.
Thank you SC ❤️
I really hope this may be a turning point bc it's been a long time waiting. X
I've been to A&E numerous times with breathing difficulties and if I say my breathing is deteriorating I have no problem.a few times I've been admitted last time was Nov with a diagnosis of Lupus related pleurisy and pneumonia. The last twice in May and June I've been seen by gp for pleurisy and managed it at home until I got an emergency appointment with my Rheumatologist. Good luck xxx
Thanks SML,
I really struggle to go even though I've worked in ED, I have PTSD from previous hospital admissions that were beyond horrible. So I am hesitant. But I just feel wrong. I can't prove it, you can't see it but I feel really wrong. I'm glad you've managed to get help when you've needed it hopefully they take me seriously x
Sorry you've had bad experiences too so have I unfortunately but my breathing goes very quickly and I know when I've got no choice but to go to hospital. It's been a bad year for my breathing 😔 xxx
Aww not great at all. I reckon there's something in the air.
No luck. They don't know. Sent me home at this unearthly hour of two am in the morning without transport
Sorry they didn't listen to you.i was once taken in by ambulance and they sent me home at silly o'clock.... cost a fortune for a taxi as we have no buses at that time. Have you asked your gp about respiratory physio to see if you have a dysfunctional breathing pattern ? I see one and the breathing techniques help Xx
Just read they sent you home…so sorry. I guess you can follow-up with your GP? I know that’s not what you wanted, I know you wanted A&E to figure it out. I’m sorry.
I’ve been living with similar SOB for the past 5 months, went to hospital for it and they sent me home too. All my scans were normal, so the hospital said there was nothing more they could do. My GP had to do all the follow-up.
I really hope you get some support with this, it’s not nice to feel alone when you’ve got worrying symptoms. 🌈💜
Cheers MFb,
Yeah not ideal, I am at the end with my current GP, so will have to switch, the practice won't even speak to me until October. But ah well, just have to wait a few hours in the rain for a bus to come. Z
Oh my gosh that sucks!!Yeah, sounds like it might be time for a new GP. Hopefully you can get some good word-of-mouth recs for your local area.
Yeah I've registered elsewhere if it goes through. But it's truly a nightmare. I'm too complicated apparently. When in reality I just have a couple of issues badly managed. I know you've had similar problems r.e. SOB, but it's linked with the seizures. And all in all it's like I'm loosing my mind.
Haha I realise that the things I say half the time don't make sense
Sorry to hear about the seizures, what a nightmare! That does sound crazy-making. I’m so glad you reached out here on the forum, this disease can be so lonelifying. We’ve got to have a safe place somewhere to vent about this crap! 💩🌻
Totally, If the lupus was controlled it wouldn't damage my brain and make me even more loopy!
And truly am freezing to death outside on this bus bench
Feeling appalled at the way you’re being treated by the system 🤦🏼♀️…& so glad you’re here with us…Sending you 💞💞💞💞💞🍀🍀🍀🍀🍀
Cheers Coco 😘💕
It doesn't matter who you are or what position you hold you can still be gaslighted and made to feel as crazy as anything.
We will see what happens going forward
XX
P.s. I can't even believe I would head down to A and E elsewhere and was just so far off my cognitive baseline I barely remember anything. It was all a fumble of words or lack of. It's like I'm trying to be there but my head is on another plane...A wee bit like the start of this article -sciencedirect.com/topics/me....
😟 as much as another CAN relate, I am….A&E has never been an ‘easy’ place for me…even when the action taken saved my life💞💞💞💞🤷🏼♀️
Totally ❤️🩹❤️🩹
I am so very sorry Lottie. Have you contacted your Rheumatologist? Ring every day until they respond to you. How appalling that you were not listened to and treated with care at A&E. I am sure that is not standard practice but they are just overworked and under resourced. You could try NHS Direct too they may be able to help you with some advice. I really hope that you get some help. Have you got a Neurologist for the seizures? If so call them too xx
It's not standard I wish I'd gone to my A and E where I worked before but I didn't want to mix sickness and work with colleagues. My chilblains lupus aspect didn't cope to well with being ousted into the wet waiting for a bus at an unearthly hour.
I will contact rheumi again, bc they are the only ones that don't think I'm bonkers rn. My neurologist knows the seizures aren't doing great and loves to call it anxiety. And the lupus pain no one gives anything for tbh.
I'll keep trying once I feel a little more rested.
Bless you. If I were you I would raise a formal complaint.It is never nice to do it and I have been reluctant in the past and just got home and had a cry and thought this is my life. A few months ago something changed and I had had enough of being told my nosebleeds were anxiety 🤬, my obesity was responsible for 48 falls and that no one would do anything for me because of my “ lifestyle choices”. I let the GP have it, I was so angry I emailed the complaint as soon as I got home. It felt good to say no more of this blame culture and lack of care and respect. Even IF it were anxiety, it is a shoddy diagnosis made because they haven’t found the cause. You deserve better so deep breath and demand nothing less . Good luck xx
I'm just not feeling strong rn, this last yr on the verge of giving up trying to do and get anywhere. Bc it's just constant pushback, and it's making it extremely hard to work.
I get it Lottie, I put up with it for years. Have you got an advocate who can support you? Mind are excellent. I wish you all the best xx
Thanks CP 😌 it's just lil ol' me, and a counsellor who is really going above and beyond, which I am truly blessed even though our time is coming to a close.
I wish you strength and presence of mind exactly when you need it.✨Be kind to yourself first and foremost.
D🏃🏽♀️
Thankyou D, 💖💖💖 I really do appreciate it. X
I also just want to update everyone and just say a BIG Thankyou! ❤️🩹 I am truly blessed even on this forum, and may your kindness not go unrewarded. My lupus nurse hasn't even convinced the GP to change her mind or even give me simple analgesia in the meanwhile prior to my rheumi in Aberdeen. L.nurse thinks biologics are the way forward, and hopefully they will pass on the note to the new rheumi about that and investigating why my WBCs are so high (for me). So I have requested to move practice and have filed a fair, I believe, constructive formal complaint to the practice. For now, I am struggling, in pain, but my mind is much stronger right now to continue fighting. Xx
Is this right? Can anyone help me
Is anyone convinced that turmeric has helped their joint and muscle aches?
Polymyositis Help please share with me thankyou 
How do the medicos manage to make me feel so inadequate and a hypochondriac
