Hello from Manchester

[ancoats23]

Just to say hello - I have had a recent diagnosis of SLE - Lupus and grateful to have discovered Lupus UK - having spent too much time doom=scrolling and reading about Selena Gomez and kidney transplants. Wishing everyone a good day and positive mental health in our personal battles.

[baba]

There is a Lupus center of Excellence at Manchester Royal Infirmary.

mft.nhs.uk/mri/services/rhe...

[ancoats23 in reply to baba]

I have an appointment with them in May - thank you

[KateM1985]

Hello! I am hopefully being referred to a rheumatologist after an episode of pericarditis and other symptoms that have been ongoing for a while (10 years approx). It's only recently that the dots are joining up pointing to something else going on and I just wondered if you'd mind sharing how you got your diagnosis and what triggered your GP to suspect lupus? Hope you're well and you find some useful information on here ☺️

[Millie74 in reply to KateM1985]

Hi KateM,

Lupus is so difficult to diagnose as it manifests itself in different ways in each and every patient and the symptoms can mimic so many other illnesses and conditions, hence why it can take many years to diagnose. My diagnosis took 6 years and followed quite a dark period of my life where I had lost a pregnancy late on and then had multiple miscarriages and fertility treatment. It was during this long period that I was eventually diagnosed and told that this was the probable cause of my miscarriages. It’s so difficult knowing that something is wrong, but not having a diagnosis, but the dots do eventually join together. I always say knowledge is power and that certainly is the case when it comes to your health. Hope you are feeling ok, I’ve lived with Lupus SLE for 10 years now and am lucky that I manage my symptoms quite well on my own by pacing myself -Raynaud’s, fatigue, myalgia, brain fog are the main ones for me. I tend to find I have periods where it’s dorment and then I’ll have a flare up. I had a major flare up in 2020 when I had pleurasy twice, followed by a pulmonary embolism - that wasn’t a good year!! I am a very positive person and I certainly don’t let Lupus define me, however sometimes it just likes to remind me it’s still there!!🤔 I hope this helps you and that you have the help and support you need going forward.

[KateM1985 in reply to Millie74]

Thank you for your reply Millie74 and I am so sorry to hear of how heartbreaking your journey has been. I can imagine a diagnosis being very bittersweet. I am pleased to hear that you manage your symptoms well 😊

I am currently feeling ok, apart from feeling uncomfortable when I sleep and feeling quite achy especially first thing in the morning, not so bad once I've got going. I am always tired. Recently I had pericarditis which came out of the blue and in November last year I had flu which took me until the new year to recover from. When I was pregnant I had low platelet counts where my levels dropped to about 80 each time, but the reason for this was never investigated. I've had hair thinning for as long as I can remember, I react terribly to insect bites, have low vitamin d and folate levels and a butterfly rash on my cheeks that worsens in heat and light and with some foods/drinks and if I'm feeling a bit rubbish. My mum has coeliac disease and my brother has had thyroid problems. Sometimes my fingers go very cold and pale looking.

The trouble I'm finding is that all of these things look very isolated to a GP (I don't ever see the same one twice!) and if the referral doesn't happen following my recent admission to hospital with the heart trouble, I'm not sure a GP will listen to me. I'm not medically minded, hate having to go to the drs (tried my hardest to avoid a&e even with chest pain 🤣) but this academic year alone I've had 14 days off for illness and it feels like my body is struggling, so I think I need to do something. Just not sure what!

Xx

[Millie74 in reply to KateM1985]

Your symptoms do sound like they could be Lupus related, particularly the butterfly rash although there are other autoimmune conditions that have cross over symptoms which is why doctors don’t like to put labels on until they are sure. Not all GP’s will have comprehensive knowledge of Lupus as they are generalists and Lupus is complicated. I know how frustrating it can be when you see different doctors and they look at individual symptoms in isolation. I would keep a diary of your symptoms, so you can talk them through with the gp and explain that you think they might be related and are recurring. The referral is important and you can ask your GP if you can be referred to a rheumatologist.

[Millie74]

Hello,

Having the diagnosis is the first step in getting the help and support you need, so whilst I know it’s not what you want to hear, for me it was actually a relief and an answer at last to the question - what is wrong with me? My advice for that early period where you just want to know everything now, which is natural, is try not to Dr Google as you will find worst case scenarios and doom!! Do keep a diary of symptoms that you can discuss with your GP. Register with Lupus UK, they are a great charity and have loads of information and resources on their site. Ask your GP to refer you to a rheumatologist. Try to stay fit and healthy and positive. Pace yourself, don’t be afraid to say no and take rest when your body tells you to. I hasten to say all of the above is easier said than done, I’m a sucker for doing too much and then paying the price!!🙄 But I do know what I should do!!🫣 Good luck with everything, always happy to be a listening ear.

[ancoats23]

Your post was like looking in the mirror - I agree that a diagnosis was a relief - I have been blaming depression and laziness - whilst knowing that I am really pushing myself. When the blood tests showed an organic cause it was a relief. Initially I was on a 15 month plus waiting list - very pleased when it was brought forward. I have been reading a lot of reliable sources - but definitely staying away from the wilder aspects of the internet. Thank you for reaching out. And hope things go well for you.

[Poshcards]

Hi, and welcome fellow Lupie xx