I’m 20 and going into my last year of University. I was diagnosed last year, but the symptoms were mild so I didn’t really pay attention to it. I didn’t really understand what it meant and I thought it was going to get better or stay mild so I wouldn’t need the medication. I delayed starting the prescription of Hydroxychloroquine till this January passed, and used ibuprofen gel to treat my flares. I found most of my friends to be really understanding, but some of them didn’t seem to get it. I tend to like keeping things to myself, so I didn’t like how I had to now tell every single person that I interact with that I have lupus and arthritis because I was in a flare. I don’t know how to tell them in easy language without giving them my entire diagnosis life story. (I saw someone’s recent post with a bunch of useful tips which I'm gonna look at).
I wonder if there’s anyone else like me who is young and feels like lupus and arthritis is going to affect the rest of their life. I had a severe flare of inflammation in July, which was a whole process with the NHS and my GP, but I finally got in touch with my specialist who gave me some steroids. However, now as I’m on low steroids, the swelling is coming back and so is the pain. Sometimes I wake up in the middle of the night and my wrists will be painful. I started methotrexate last week, but I know it takes a while for it to take in. I’ve upped the steroid dose by 5mg. It might be an odd question, but I don’t know how much I should be in pain before I ask for help from specialists. I know they’re all busy, and under-staffed, so I don’t want to be a bother. But now I’m in lots of pain again and I’ve learnt the hard way that I don’t have to be in so much pain to ask for help. How much should I wait before I ask for help?
I worry that my inflammation will limit my ability to perform in my job and any future opportunities that will come my way. I know stress isn’t good, and diet and exercise play a part too. And I’m going to have to change things around to minimise the stress (especially with uni), but it’s really hard.
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Contact student support at uni. They can be very helpful if you have a flare and struggling to complete assignments etc you may be given extended time. Also extra help during exam times.
Re pain if you are suffering you need to let the doctors know.
Don’t be afraid to ask for help.
Lupus uk do an information pack for newly diagnosed, lots of helpful information. Also maybe some leaflets to give friends / relatives to explain Lupus/SLE.
Hi - it must be so hard to have this stupid illness while you are trying to study. I won't share with you right now my horrible experience of getting a diagnosis while on the other side (ie trying to teach undergrads and do research) - but suffice to say it was not nice.
I realise this will be the last thing you want to do - but have you considered taking some time out to get your lupus under control? Pain can affect your ability to concentrate and remember information, which is the last thing you need right now, and stress will be exacerbating everything.
Learning to live with lupus can take time, but everything will be easier once you have the flares under control. Try not to look too far into the future - but maybe consider taking a semester (or a year?!) out, if you can? I know it isn't possible for everyone, but if you can it is worth considering. Good luck with it all.
I used to work in universities now (research and teaching) and WinterSwimmer is giving good advice. I would add that please let your personal tutor know about your diagnosis and seek support from student services or whatever your department/ uni calls it. `they can help you if they know more about what's going on. Good luck with new academic year coming up!
I’m also 20 and at university! I don’t have a diagnosis but have had a lot of health problems and am under investogation for lupus and FMF and other autoimmune and autoinflammatory conditions. I, like you tend to keep how truly terrible I’m feeling to myself and even when friends are supportive it can be hard to find people who understand, but I’m glad most of yours are understanding! There are quite a few posts on here and other places online with good ways of explaining it, there are also some really good accounts on Instagram which I’ve found make me feel a little less alone haha and also explain it in simpler ways!
I understand the weird question of how bad it has to be to get help, I have some diagnosed comoebid conditions which complicate it further and I put off going to hospital as much as possible but recebtly got stuck there in a flare try and look out for yourself though, you’re the only person who knows how truly bad it is and even though they’re extremely busy it’s their job to help so don’t hesitate to reach out for that reason
I’m so sorry thoigh, I have found the last few years extremely difficult and can’t imagine all of what you’ve been going through. I like you worry about not being able to work and keep up with study and my symptoms have massively impacted pretty much every aspect of uni. However like baba said you should definitely get in touch with your uni and make sure they are aware, my uni has been very helpful and accommodating and if you’re in the UK it’s worth applying for things like DSA as well
I feel your pain 😔❣️I felt I had no one to talk to about the illness or who would understand when I was diagnosed at 14 but at healthlocked we are all going through difficult times together. So keep in touch as we all can relate 💓 😊 my heart goes out to you stay strong and positive. You can get through anything your stronger than you think and clever than you know keep on going and never give up.
With any medicine 💊 it will take time to find the dose that is right for you, be patient and hopefully things will get better very soon. You might want to ask about taking pain killers and if there is more you yourself could do for inflammations other than tablets like ice pad or something like that. I hope I have been some kind of help to you ☺️ let's talk soon again.
You need to let your consultant know as I find the older one gets the worse the pain gets. Flare up is very random and can leave you in excruciating pain in your shoulder, fingers and knees. Swollen ankles and knees .
Hi love. I am 21 and also in uni, I got diagnosed at 20 too so I honestly know how tough it is. i know how hard it is to explain to people without telling them everything which we dont want to do, I know how hard it is to feel like it is something invisible yet can be so painful and exhausting and I know how hard it is to get on with uni while feeling so rubbish. It is so overwhelming at times, especially being so young and thinking about the future. You are not alone I promise.
Uni is so stressful as it is and having lupus on top of it is horrible - people don't really understand how difficult it is on us and it can be hard to explain. Tbh I am still figuring it out myself - but defo defo open up to the uni, both academic and pastoral support. I had adjustments and considerations made for me and also had a lot of support for my mental wellbeing as well. I am a medical student and your worries are mine exactly - I am scared about how this will affect my ability as a future doctor and it really does stress me out. But what I am learning is that with lupus, we really have to take it one day at a time. Everyday looks different and I have learnt that worrying about the future does nothing but make you feel worse physically and mentally. Please do speak to your doctor, it is better to prevent things early than wait until there is a trigger and you feel worse. My dr recommends mycophenalate mofetil as a medication option and seems to work for me, but methotrexate also works well just give it time. I have been on steroids for 9 months now so know what thats like too! Make sure you also have access to a specialist nurse as they are good to contact over anything worrying you in between appointments.
It is really tough and I am sure you are doing so much better than you think. I dont want to overwhelm you with too much info but please feel free to reach out over anything lupus/uni/medication/life related as I am going through the same as you and things are beginning to settle for me. You are not alone I promise. Sending love and hugs xxx
Thank you for your kind words, it helps a lot and I can come back to them if I'm struggling in the future. I've got an ILP (individual learning plan) in place, but I'm thinking of updating that because of the flares I've been having. Thanks for making me feel less alone 💜 and makes me feel a lot better
The most important thing with lupus is learning the triggers that set off flares and avoiding them if possible. They are different for each person so that takes time.
Sunlight is a huge trigger for most people with lupus, so try to stay out of direct and strong sunlight as much as possible. Use sunscreen, cover up and sit in the shade whenever you're at an outdoor party. Never lay out in the sun.
Before I was diagnosed I noticed my hair was falling out in summer and painful scalp and face rash and painful joints, and that was because I spent more time outside in strong sun in summer, which I no longer do.
If you had a bad flare starting in July, I'll bet sun is one of your triggers!
Another major trigger for many is sulfites, which are a preservative in all wine so best to avoid that too. I gave up wine, and I really improved.
Definitely don't smoke cigarettes either. Too many toxins in them to trigger you..
I avoid sun and sulfites and that really helped me avoid flares. I also manage stress by getting plenty of rest. Try to pace yourself and get plenty of sleep, don't sunbathe or spend time in strong sun, and give up wine and see if that helps.
I was treated with hydroxychloroquine and Meloxicam at first...Meloxicam is a once a day anti inflammatory so you don't have to take as often as ibuprofen and it's easier on the stomach and doesn't have the bad side effects of steroids. Your doctor can prescribe it.
After a couple years I didn't need meds since I was avoiding my triggers and having mild or no flares. If I do get what feels like a flare starting now I take Meloxicam for a bit and it's enough now to keep things under control.
Don't despair! You can figure out your triggers and learn to avoid them and manage them with some lifestyle changes. I freaked out at first too, and learned how to manage things and have led a full life except for more naps, no sunbathing and no wine!
Thats a pity with the sun, and what you said about the July flare makes a lot of sense. I really enjoy being out in the sun, and because I didn't get any rashes I thought I would be ok. But I have noticed my joints are more sore after a day of sun, so I'll keep it in mind. About the wine, it's a good thing I don't enjoy wine so i wont have to worry about missing out! 😂 I'll keep in mind about the sulfites. Thank you for your help!!
Even if you don't get the rash, sun exposure makes lupus worse in something like 70% of lupus patients. The body interprets the damaged cells from sun dae from solar radiation as an infectious intruder and that gooses up you immune system to attack not just the cells exposed to the sun but also other tissue in the body as well.
People don't realize the sun is indeed harmful radiation that causes damage, which is why people get wrinkles, tans, skin cancer, and age spots. For people with lupus, that damage triggers flares from the immune system overreacting to involve other systems like joints and organs, not just the skin.
So avoid spending time in direct sunlight as much as possible and use sunscreen and sun blocking clothing if you know you need to be out in it. Fluorescent lights also cause problems, but other lightbulb types are OK.
So sorry 😞 that you have been diagnosed so young with this debilitating chronic illness 🤒 don't suffer pain in silence, always speak with your G.P. or your hospital Consultant, I wish you the very best 🙏 at Uni. X
You've had some excellent replies from people here and it sounds like you've also been looking at other posts for advice too. But I just wanted to welcome you to the forum and say that if there's any information or signposting you need, please do get in touch with us at Lupus UK any time, we're always happy to help if we can. You can call our helpline Monday-Friday, 9-5, on 01708 731251 or email HeadOffice@LupusUK.org.uk . I'm also always happy for you to email me directly with questions if you prefer on Debbie@lupusuk.org.uk
Learning how lupus impacts you and how to manage it around your life can be a lot to deal with and can take some time. But you are not alone.
In terms of university, I'd definitely echo what others have said and say speak to your student support services. You mentioned in a reply that you have an ILP in place, which is great. They're sometimes not always suited to unpredictable or fluctuating conditions, but you should be able to get your ILP adjusted if needed, or have it written / set up in a way that means you can access more support when you're flaring and need it. Student Support should also be able to help if you want to look into applying for DSA or similar schemes to buy, for example, ergonomic computer equipment, if that sort of thing may help.
I agree it can feel really hard to know what counts as "bad enough" to seek medical advice when you have a chronic illness and feel ill a lot of the time, but please know that it's not actually about "bad enough" at all - you are not a bother and that is what they are there for. If your current treatment isn't adequately controlling your pain or symptoms, then do go to your medical team for support. They may be able to make some adjustments to your treatment to help. You are not a bother. I know it can take a little while to get an appointment, so in the meantime you might find this blog helpful, as it has some tips from other people with lupus about managing pain: lupusuk.org.uk/pain-managem...
I don't want to bombard you with too much information in one go, so if you ever have any questions, please do get in touch with me any time - Debbie@lupusuk.org.uk
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try and look out for yourself though, you’re the only person who knows how truly bad it is and even though they’re extremely busy it’s their job to help so don’t hesitate to reach out for that reason
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