I'm new here, diagnosed a few days ago. Only 21 a... - LUPUS UK

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I'm new here, diagnosed a few days ago. Only 21 and need advice on how to carry on...

alice_doick135 profile image

I have been struggling with extreme fatigued and achy, painful swollen joints for months..getting to the stage in which I can hardly stand in the morning without the help of my partner. I work in retail and i am struggling big time. I was diagnosed with lupus 4 days ago, although saying was only mild she did various blood tests which i'm waiting to hear back from. How are people continuing to work and continuing in their normal routine. I am so emotional and in such bad pain is awful. I have been put on steroids for 2 months and also 200mg of hydroxychloroquine a day...any advice for someone recently diagnosed...

11 Replies

Hello and welcome Alice_Doik,

First thought is that it will take some time before your hydroxychloroquine takes effect; typically at least 2-3 months. You should find that this eases your symptoms, and if not, being at such an early stage of diagnosis, you may find other ways of reducing your symptoms (for example, an increase to 400mg a day might help).

Meanwhile, on the work front, join a trade union and read the LupusUK leaflet on working with lupus here lupusuk.org.uk/publications/

Keep in touch x

You will feel much better when the medications start working. I found hydroxy took a couple of months but did wonders for the joint and chest pain and fatigue. The steroids should work quickly though - what dose are you on?

From my personal experience I can work fairly normally between flares although retail sounds tough when you're fatigued/in pain if you have to stand a lot? Have you told your boss? Can you take a few days to rest and let the steroids start working?

I hope you feel much better soon

x

Hiya - only 5mg of steroids at the moment - I went to work Monday but he sent me home -- sadly he's not the most understanding so I'm job searching a more admin based role elsewhere :) trying to keep smiling but it's been an emotional few days -- xx

Hi dear. Sorry to hear you are feeling unwell. I promise the bad moments will pass. It takes time, don't give up!

Hugs!

You have got a lot going on, both in your mind - having to come to terms with the lupus diagnosis and in your body - with the lupus giving you pain and fatigue. Very very hard at 21 but you will feel better and you will get through this. What I have learnt is that when the lupus hits you need to be kind to yourself and rest much more and you need other people - including bosses!- to be kind too. I think there is a leaflet on here that you can give to your work to help them understand - one of the admin guys may put on a link?

But if you can find a less physically demanding job that you are happy with, I'd definitely go for that. I was in the military which obviously was never going to be compatible with lupus but I found a job that is more flexible and I can work from home (bed sometimes!) when I'm in a flare.

Your GP can sign you off work if necessary? Take some time to accept the diagnosis and let the drugs take effect and the flare get better. You may be someone who has times when they feel very well between the flares and flares may not happen very often - the way you feel now will NOT be the way you feel for ever even though it might feel like it.

I can go months/even a year feeling very well and I know many people are the same. You will learn the signs (maybe a rash, ulcers, joint pains re-starting?) and learn to take it easier/ start more drugs when that happens and hopefully keep it at bay.

Don't feel you need to be brave and keep smiling - you are having a tough time and it's OK to admit it and ask for help (it's taken me 6 years to realise that though so I haven't really got a leg to stand on!)

xx

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator

Hi Alice_doick135,

Welcome to the LUPUS UK HealthUnlocked Community!

I believe you have already requested an information pack via our website however if you haven’t, you can do so here: lupusuk.org.uk/request-info... .

We published an article on our blog about pain management which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem... .

It is reported that almost 90% of people with lupus experience extreme fatigue; making it one of the most common symptoms alongside joint/muscles aches and pains. Last year we published a blog article on managing fatigue which you can read here: lupusuk.org.uk/managing-fat...

Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .

If you need information about lupus and employment, including information about your rights and what support services are available, we have two booklets that you can read and download at lupusuk.org.uk/working-with.... If you need physical copies sent to you, please email me with your name and address.

Please keep us updated, wishing you all the best.

I remember that feeling. Tough to shake. How are you now?

alice_doick135 profile image
alice_doick135 in reply to

the medication has really kicked in!! Feeling so much better than I did :)

in reply to alice_doick135

Good! The pain going away takes a lot of fear with it.

alice_doick135 profile image
alice_doick135 in reply to

It’s still a weird stage as I got a letter after seeing the Hospital doctor and after verbally diagnosing me with lupus it doesn’t mention it in the letter - it says artheritis in ankles and connective tissue disease or something? All too confusing

in reply to alice_doick135

You ever get the feeling that when a doctor can’t really diagnose anything they just say “it’s lupus!”

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