LUPUS UK
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Hello from D.. SLE diagnosee..! Struggling :(

Hello all - I'm Deb, Sussex UK based. First of all, I'm sorry you needed to put yourself on this blog... but hoping you find it a positive "raft" to cling to in times of need and just for sharing. I've been recommended to join by a wonderful chap (Paul) at Lupus UK so... here I am. I'm newly diagnosed with SLE (as of Feb 2018) but with the (seemingly often) 4yr wait for diagnosis. Once my life lone Raynauds worsened to a scary degree and the vasculitic lesions started and my new younger GP(!) identified my years of low white blood cells and complaint of utter fatigue over and over it was off for the rounds of Rheumatologists at my local hospital. My new Consultant Rheumatologist said I've probably had it since birth. However - I have a Registrar I meet on occasion that is obviously of the opinion I don't have SLE as I am negative ANA. Paul (Lupus UK) sent me a great link for those with this issue and new research that is coming out for better diagnostics: lupusnewstoday.com/2018/04/...

- it's so utterly upsetting to have one Physician saying you have the disease - and another clearly feeling you do not - whilst trying to manage the hell of the symptoms.

I am REALLY struggling with work - Social Work. As you may know, the job isn't for the feint of heart, over 50's - and certainly not with this condition. I'm off sick again, and feeling I just can't hack it anymore. I'm scared. I live alone with a needy cat... although have just acquired a very understanding older man (ie he also has brain fog!). I say older... he's 61 and I'm 55. My Occupational Health Physician says I need to see how the 4 days working from home goes.. (as agreed with my line manager) but frankly this isn't much of an answer - I am in the office lots due to meetings and out in the community for my cases. It's exhausting. Reduction in cases might work too... but most days I'm lucky if I can actually get out of bed in the morning. I'm wondering if I need to retire on ill health grounds... Paul said a lot of 50-60yr olds with SLE feel it's time... I'd like to discuss with anyone who has gone through this in the UK - and will be posting a "please help!" question.

And now, it's time for a lie down.... sorry, think I blathered.

Thanks all and hope you're doing OK.

Deb

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Hi Deb. I'm very much in a similar position and line of work as you (RNMH), I've been diagnosed with SLE six weeks ago by the GP and am awaiting Rheumatology appt. My work have been extremely supportive and have offered to adjust my working hours, have contacted the owners of the building I work in to see if they can make some changes and I'm waiting for Occy Health.

I did read up on policies about sickness because I am worried about HR and the joys of disciplinary action if I'm off more than three times in a year. With a bit of exploration I found that SLE can be described as a disability under the Equality Act 2010, so I'm in the process of getting HR to record that I have a disability so that I'm not subject to any action for time off. With this there also comes an obligation for the employer to make reasonable adjustments for you, this I would argue would include addressing case load complexity, numbers, distance to be travelled etc. The other thing is have you thought of possible redeployment to a role that doesn't require so much travel and would allow some home working or attending meetings electronically?

You said that a registrar has questioned your diagnosis, what I'd say is that if a consultant has said you've got it, I'd take their opinion, they really are the specialists, the registrar, while probably very experienced is still on that learning journey. Read as much as you can, it helps with understanding whats going on with your body and also helps you stand your ground with unreasonable medics!

Take care.

Jim

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Thanks Jim. Sorry to hear you've been diagnosed - but would be wary of a GP making it ie don't think they can. Has the Occ Health person taken it as read? I'd have thought you'll need the Rheumatologist to do the diagnosing. I suspect you have a long journey ahead of tests and Rheumatologists before you get to the full on diagnosis. Mind you, what bloods came back from GP surgery tests? Sorry to ask this - but do you have organ involvement? You'll be a clever chap, of course, and know what criteria you'll need so far. I've just read that article from the chap at Lupus UK I spoke to today (see in my original email) - he was so helpful... From that you'll be able to diagnose yourself! I definitely have SLE, having read it - and my ruddy symptoms for years! Read it and see whether you have the 4 requirements... it's lengthy but essential reading if you're about to start seeing the Rheumys. You want to go into the appointment with a clear list of your symptoms - when they started, how often. Take photos of whatever you have ie lesions, mouth sores, blown up joints and show them in the appts. Don't feel embarrassed about talking about yourself - I did and it didn't help. Are you local to Brighton? What were your bloods? And no worries if you don't want to discuss. so yes, have adjustments etc.... but they're not enough... D

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Ahhh actually this is the article for you on diagnosis: academic.oup.com/rheumatolo...

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Hello and welcome, Deb,

There's a lot of people on the forum with experience of having had to make adjustments to their work situation, as well as having to take ill health retirement (as I did), so I'm sure you'll find help and support here x

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Welcome Deb, it’s a long journey but this is a great forum, very informative and a place to feel less alone. I dip in and out and it’s good to know I’m not alone in my struggles and there are so many posts and people that I can relate to.

In reply to my year old post I’ve since been diagnosed with limited Systemic scleroderma (CREST) as well as SLE. I’m now on Azathioprine and pinning my hopes on it working. My rheumy is at the Princess Royal and I had to give up work 3.5 years ago after a long struggle to keep going, in the end it was just too much.

Hope you find the forum helpful and supportive too. Thanks for the link, I’ll read that tomorrow...brain dead at the moment!

All the best

Diane🌸x

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Thanks Diane. Glad to hear you have been correctly diagnosed. My heart went out to you when I read your original post. So awful. I'm on Metho as my TMPT (or something)blood test identified I couldn't take Azathioprine. Any changes for the positive yet? I do hope it helps.

This blog is helping me already - hearing from you is part of that. I've felt excrutiatingly alone, even with friends around. Found myself crying again today due to all the feelings you get with this... ie what next for my life and those close to me? This will help me so much I'm sure - and I can hopefully help others.

Re the link - it's not the whole article - just a press release type. I think this is the one I meant to put on: academic.oup.com/rheumatolo... it's thorough and exacting.

All the best to you and maybe we'll communicate again along the way. Deb x

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Hi Deb, because I’ve been pingponged from diagnosis to diagnosis to undiagnosis I don’t really feel at ease,ie is this really my diagnosis?! back in October my rheumy thought this was Limited scleroderma which I know I fit the criteria for so was happy with that, in January I asked him if I was still under the umbrella of UCTD and he said no, since then all my weekly /two weekly blood forms have SLE on and the clinic letters and correspondence have a diagnosis of SLE so I’m still slightly confused, I have an appointment on Tuesday with him so I have much to discuss, other than that I am really happy with him, he is a good dr, he’s kind and he listens to me, nothing is too much trouble, he answers all my (long) list of questions and he is trying to help me after years of no one really listening to me and blaming everything on Fibromyalgia and after seeing a really awful incompetent rheumatologist he has made me feel ‘safe’ if you know what I mean. I think he works at RSCH too, maybe we have the same rheumy!

He was going to put me on methotrexate but because of my ANA pattern I could develop lung fibrosis and he said one of the side effects of methotrexate was lung fibrosis and if I developed that we wouldn’t know if it was my disease or the drug causing it, my TPMT was fine so he put me on Aza at the end of January but within a month my WBC dropped drastically and I had to come off it which was frustrating as I wasn’t getting any side effects from it like I do with almost every drug I take, I had to wait for it to recover and I’ve been back on half the dose now for 3 weeks so not really long enough to notice any improvement, although my better days seem to go on a few days more and on those days the fatigue is not quite as overwhelming, whether that’s the drug I don’t know but I’ve had overwhelming fatigue for the last eight years pretty much on a daily basis so I understand your reasons for being so tearful, I have bouts of crying where it all feels hopeless and lonely even though I have a wonderful husband who is patient and kind and I’m just waiting for life to pick up where it left off 8 years ago, friends and work colleagues have drifted off into the background because planning anything is so hard, in many ways I don’t mind because I haven’t got the energy to cope with the pressure of being well enough to do things but at the same time I feel upset that I can’t do all the things I want to especially with my children (who are all grown up and amazing), I have to be grateful for all the small things that I can do, I’m still learning to be at peace with it all but it is incredibly frustrating, I try to think of all that I do have and can do and not about what I used to have and what I can’t do (not always easy) .You do go through a process of grieving for the you that you once were and people on here will know and understand what you’re talking about and feeling, there are some lovely people on here that have helped me so much.

So no Deb you’re not alone, stay in touch on here, I’m sure it’ll help you.

Sorry this is long...

Hugs

Diane🌸x

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Oh Diane - that was so sad to read - but helpful too as this was how I feel exactly... minus the kids sadly. Read that article it' great. Is yr rheumy beginning with H? Or V?! Off to do the housework - boy I need a cleaner!! X

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Ha yes a cleaner now wouldn’t that be a treat....and yes V and an H, I’m thinking we have the same rheumy 😀xx

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First of all welcome . I can identify with your issues as I’m in a similar position . Having worked in healthcare and often alongside social workers (whose job I couldn’t do due to high case load & often little reward )

I too don’t have a definite diagnosis yet and struggled to work 4 hrs a day so have been off sick for 3 months .

What I understand about early retirement due to Ill health is that it’s very difficult and a long process unless you have a life limiting illness and impossible without a firm diagnosis . Umm 55 in Dec and planned to retire early anyway but these last few months have confirmed to me that I’m very unlikely to be able to go back to work before then .

Hope you can a firm diagnosis soon in the meantime speak to your HR department in confidence and see what your other options might be .

Good luck

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Hey thanks Angela. I do have a definitive diagnosis - my consultant has said SLE for sure. It's just his registrar that is learning and obviously feels the opposite. I've made my feelings known on all that and my Consultant has said he'll try and ensure I only see him in my 3mthly reviews. It's just ridiculous to have someone under you messing with your diagnosis as a Specialist - it's clear my consultant "understands my concerns about this situation". It's also clear from the British guidelines I have SLE. I can send if you like? Lupus UK sent to me yesterday.

So sorry you've been off this long. I've struggled for years now too and I'm really feeling it's so very hard I'll somehow have to cut hours hugely or altogether. How anyone lives alone on a much reduced income will no doubt become clear for us some time soon.. Thanks for your support and I do hope yr meds start to work or are adjusted to at least put a dent in the symptoms..? Methotrexate has limited the lesions and sore peeling fingers but not a huge amount else. Hydroxychloroquine made me violently ill (aura migraines and diarrhea). A clean diet, 1.5litres of water a day and no alcohol help somehow.. great eh! All the best to you Angela... let me know how you get on x

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