Very new to all this and feeling very lost and confused. Following initial diagnosis back in January of seronegative RA I have recently been diagnosed with SLE.
I am taking 200mg Hydroxychloroquine daily and 20mg Methotrexate weekly. My symptoms are ever present, painful joints with minimal swelling and fatigue like I didn’t know existed. I have lost over a stone in weight and have now become breathless on exertion with left sided chest pain when taking deep breaths. Attended A+E yesterday, had CT scan which came back as normal same with ECG, D Dimer bloods were raised.
I just don’t feel listened too by anyone. This isn’t normal for me. I’ve gone from being a busy active woman to someone I don’t recognise. My rheumatologist and specialist nurses just seem to throw prednisone at every symptom I have which keeps me awake all night. I work a job I absolutely love but right at this moment in time I honestly don’t know if I can continue due to fatigue and pain. I’m so miserable, feel completely alone and desperate to get back to some kind of normality. Sorry to waffle on.
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Tess1971
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Firstly - a very warm welcome to the forum. Secondly - you are not alone and not waffling- we are here - you have come to the right place for support. We understand. We are all experiencing some if not all of what you describe - rubbish isn't it? Auto-immune diseases pull the rug from under your feet and try to take away who you think you are.
Its a bit like a bereavement, there's anger, grief, a sense of loss and all sorts of emotions. And of course its all invisible to those looking on, other people however well meaning don't really get it even though they think they do.
This forum is a safe space to ask questions, listen to the experiences of others, rant when you need to and offer an ear and support and understanding to others too.
Its hard to carry on sometimes , but we do, and we get by and gradually in one way or another by making changes and accepting that for now (and maybe longer) that is what we need to do. Then, something gradually dawns on us - we find we are managing it bit by bit and a new 'us' begins to surface and maybe that isn't quite as bad as we first feared.
Thank you so much, you have given me a chink of light at the end of the tunnel. I’m just having one of those days today, feeling bit sorry for myself.
My main concern, today! is my breathlessness on exertion, nothing abnormal found yesterday in A+E, they were very good. Chest x-ray, CT scan and ECG all normal, so what could be causing the breathlessness and pain in lower left side of chest when taking deep breaths. Anyone else experienced this? Thank you
We all have those days Tess. I don't have the symptoms you describe at the moment. I have had pain in the chest wall called costochondritis in the past which was relieved with a painkilling gel from GP. It went away by itself in the end, as lots of lupus things do - they flare up and down. I think you might find one of the leaflets from Lupus UK helpful. Go onto their website which is separate from this and click on the What is Lupus tab, then scroll down til you see Publications and then look for the one that says Heart and Lungs.
Hi. I've had breathing issues since 2014 when I developed bi lateral pleurisy with effusion.Pleurisy and pleuritic chest pain is quite common in people with sle. I've been under respiratory and chest specialists, I've seen an asthma consultant and had every test possible.ive also had pulmonary rehab and respiratory physio One consultant thinks my lupus affects the muscles which leads to dysfunctional breathing.
Prednisone is the only drug that settles my breathing and keeps my lungs stable . Every time i try to come off them my breathing deteriorates very quickly. As a result I'm currently steroid dependent. Over the years I've learnt to read it and I have a distinct pattern so I know when it's going to go. I've also learnt to read which way its going to go so i then decide if I need to contact my gp and increase my steroids.sometimes I can ride it out if its a minor flare but if its a bigger flare or a chest infection I need stronger antibiotics and a steroid increase. I take a prophylactic antibiotics 3 days a week.
Stress is a major contributor so you must keep that to an absolute minimum.
Breathing excerises and pacing yourself helps too. Kind regards SML x
Just to add that insomnia is also part of Lupus. I can't say steroids stop me sleeping there are many days I have 'sleep days' when that's all I want do....especially during steroud drops.I just had a spell of not sleeping but I have been struggling with pain as a result of 2 ongoing Injuries.its all swings and roundabouts but you never know which you will be on or for how long x
hi,please take your Prednisolone as early in the day as you can.
Sometimes I take a bottle of water and a couple of biscuits to bed.
If. I wake after 6 am I eat the biscuits take the Pred,drink some water.
When I was first diagnosed and struggling with high dose Prednisolone,if I couldn’t sleep,I’d get comfortable on the settee,put boring TV on low and lights low.sometimes it worked,sometimes it didn’t.
It’s really hard trying to cope with the fatigue ,what I have found useful is the spoons theory,it’s on the lupus website.
Basically,it’s based on you have so much energy, have to try to organise yourself so that you still have energy in reserve.in my case it means that I have to build in rest periods in between doing things,instead of rushing to get everything done.
After 6 years I still find it frustrating and disheartening.
At least I’m still here. I saw the rheumatologist this week,it was fairly positive,there no inflammation in my joints.
I just need to be careful of my lung health and to eat more ,she said I can not afford to lose any more weight.
You need to be kind to yourself,take pain killers when you are in pain, and attempt to manage the fatigue- you can’t get rid of it,it just needs to be managed.
You are not alone,this forum is helpful,we are here to support each other.
You can always post even if you’re having an awful day and need to offload. Take care of yourself xx
I don't suffer from this - I am watching and supporting my daughter recently diagnosed - so like you new to this and a minefield. Just wanted to send support and hope its a standalone 'one of those days' and you feel a little better tomorrow. I fear (as we are in early stages of trying to get medications right and get this initial flare up under control) if we will be heard. I personally - without any medical background and relying on material have found from Lupus org and online - think its attacking her intestines presently, I don't think they are acting on that +, but as she is over 18 nothing I can do but encourage her to keep asking. With our NHS being so overwhelmed in so many departments I do think you have to fight your corner and be a voice as you are just an NHS number in the scheme of things.
I know this is no advice really - just suggesting if you feel not being heard and this is not normal and impacting your ability to keep work life balance going, keep asking. Sad that we need to do this sometimes, especially with this illness that requires no stress, rest and keeping calm. Hope you feel heard and get your symptoms under control very soon.
Hi Tess, you are certainly not alone, you have come to the right place here. This group is so supportive and all of us here understand the pain, fatigue and isolation caused by Autoimmune conditions and the frustration and despair of not being listened to.Prednisalone works so well but unfortunately sleep depravation is one of the side effects, along with heartburn and constipation. I am going through gradual withdrawal for the fourth time this year so I empathise with you. It is unpleasant for me, most days I am like a zombie but it must be worse for you trying to work through it. Can you ask for a referral to Occupational Health so that they can recommend reduced hours until the flare eases? Your employer should know when you are struggling and need help. It would ease your stress and as Spanielmadlady says stress exacerbates the condition.
I sincerely hope things improve for you, it is so hard to function sometimes. Xx
I’m so sorry to hear about your symptoms x I have times like that too and am on the same meds. I just don’t know how much worse it could be if I stopped the meds. I can’t give any advice except to find a dr you can talk to and pour it all out! I tend to write down my symptoms and feelings before I go.
It sometimes helps and on a good day you can look back at your notes and realise that you do feel a bit better. Honestly you will have better days x sorry that’s not very helpful but wanted you to know you’re not alone 💖
Hey, I completely understand you and I used to feel that way too. I do also feel alone sometimes and instead of writing you w huge paragraph here was wondering if you wanted to add my socials maybe instead and have a chat there? I’m 27 and was diagnosed with sle lupus nearly 2 years ago. I’m quite active and sometimes it gets me very emotional when I can’t do certain things because of the disease.
Hi, I have what we call my 2 monthly lupus pain, it can be anywhere in my body, not at all nice, but it passes until a new one starts. I have had Lupus over 31 years, its not easy, luckily I have a wonderful Rheumy, take care xx
Hello there so sorry that you are feeling like this and it is completely understandable. Ironically, I had exactly the same experience as you last weekend - went to A and E with breathlessness and left sided pain breathing in. Had same tests as you all clear but was transferred to same day emergency care centre who did loads more tests and liaised with rheumatology who ordered more bloods ( not great for my needle phobia but glad to be looked after!) This showed significant ongoing flare and urine had protein. Being monitored now and was also referred for echocardiogram - waiting for appointment. I have only been taking hydroxy for 8 weeks so hopefully this will kick in soon. I identify with you about work - I love my job but the last 6 months have been a survival course. Feeling hopeful that flare will settle. Menopause definitely in there and post covid reaction. Sending you a big hug. Hang in there. It will improve and you are right to trust your instincts and persist in getting checked out. Xx
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Feel so alone :-/
Feel so alone. 
In despair feeling lost and very low 😔
Feeling a bit lost...,
