i just got diagnosed like three weeks ago. i've been crying every day since. each day i wonder if it will be the day i accept it finally. i'm constantly on this rollercoaster of emotions. what's worse than being devastated is seeing my boyfriend and family in shock and denial. my boyfriend says i'm gonna be okay and the doctors are gonna fix me and i won't be in pain for the rest of my life. but i feel like he just doesn't understand and hasn't even done much research on the disease. my friends for the most part don't get it either and act like diet and exercise are all i need. i've been on meloxicam and cellcept and i feel worse than ever. i also have ibs, bpd and ptsd/anxiety. i just ate my first real meal of the day and i'm laying here unable to move because of the cramps. even water makes me throw up when i'm bad. i'm afraid of losing more people that i care about. my fear of abandonment is worse than ever. i'm more scared of losing mobility. im scared that i'll be in pain my whole life. and that i'll develop an opioid addiction bc i know myself. i'm scared of all the things i see lupus doing to people and i just don't know how i'm gonna be able to cope. will i just get used to feeling this way? how long did it take you guys to kind of calm down after you found out? i feel like i'm making my body feel worse bc i can't control my anxiety and grief.
new diagnosis: i just got diagnosed like three... - LUPUS UK
new diagnosis
I'm 33 and have numerous conditions including SLE - I am currently pregnant with my 3rd baby and just completed college..
It's not a life sentence a lot of it is about how resilient you are.. live your life and enjoy every second x
It's a perfectly manageable condition - the stuff u read on here tends to be people at their worse who feel compelled to write and vent because it helps.. we don't hear the positive stuff enough x
Hi Kay814
I know how you feel. I felt exactly the same, also newly diagnosed. I have been in extreme pain for the last three months. One area recovers and another area will start. I cry not because of the illness but the level of pain it brings and scared where it will start next. I have been in and out of hospital too for the last two months. My husband is working overseas. I am staying with my sister but she have a small baby to look after. My mum is extremely ill with the sane autoimmune disease (almost die a few months ago), so the whole family is busy with her. My in laws live two hours drive away. I am normally very independent and string but when you are in extreme pain, in the hospital by yourself with no visitors it makes the illness 10 times worse. I felt people didn't understand what the level of pain I am going through and how this is changing my life. Signing up to this site is the best thing through out the journey so far. Reading everyone else's post, I have something to relate to. I check this site everyday and feels better that I am not alone.
Good luck.
Been there when I was hospital u have to just keep on going think u were alone how would u cope I know It's hard
Hope ur better
I too felt overwhelmed when I was first diagnosed, but with trial and error with medication we got there, I now tick along nicely and complicated a total warrior a couple of weeks ago to rsise money for Lupus uk. At first you will feel like it is all about the lupus but as the lady says you have to live your life and try and manage it the best you can, your body will let you know if you have pushed too much and need to rest (usually the next day). Speak with your specialist nurse and try and find what works for you. Good luck and hope you feel better soon x
Diagnosed recently as well, though I'm more at the end of my life than the beginning (so mortality presses anyway). But I have work, a family, and try and have as much of a life as I can.
One thing is absolutely essential and that is to have docs (GPs and consultants) who you can trust. Make sure the meds are working for you (there are a few options), and look at improving your lifestyle when you are stabilised (diet, stress, exercise etc etc.).
When you are in the middle of a nasty flare up things can seem hopeless (I know, I was there 2 months ago). When the meds start to work you start to see some chinks of light again, and see the possibilities of putting your life back together (perhaps not in quite the same way as the past).
One thing I'm finding is that I seek out people who are emotionally mature enough for me to be able to be open about this disease (though not make it an endless topic of conservation) and who are just calmer people (because nervous types are very grating!). I recognise some friendships might not survive it. I am also recognising I might need to rethink work too.
Basically in my view a diagnosis like this is a wake up call to rethink your life a little (or a lot).
My consultant (the nice one) said unlike the past Lupus is not a life sentence. People can live to 90 and have a relatively normal life once they find meds that work and they make necessary adjustments. But it takes a while to accept, I know. Give yourself space to learn to live with it (and other people need to give you that space too).
Sorry to hear you're struggling. It does get easier and I've been through that period when fear and grief just completely overwhelms you. The right balance of medication can improve things significantly and it may take a while to learn to live with your conditions...but you will get there.
Lupus UK have a great telephone contact service where they can connect you with others around the UK to hear their experiences and for mutual support. I spoke to a lovely lady when I was struggling and it helped so so much just hearing her say that what I was going through was normal and she'd come out the other side. Your family can use this service too to speak with other Carers and discuss their feelings. I'd really recommend it.
Keep smiling, brighter days are to come x
Please have a chat with one of the many Lupus UK contacts. Best wishes Kevin
It's not a diagnosis any of us want. With time and medication adjustment, life will improve. The BPD and PTSD are probably contributing to your lupus anxiety. Keep visiting your GP and rheumatology department until your tablets are right. You can do it. Good luck x
It's really not a life sentence. I was diagnosed about 25years ago I have been through some tough stuff but you do get thro it. Get your mess balanced and find a good GP. Talking to someone does help. It stops you from feeling alone. Find the Lupus UK website. They have lots of up to date info. There is a lot of doom and gloom around some sights but keeping positive helps you so much. Stress doesn't help at all it just makes everything worse
Hope this helps xx
thanks so much for your insight guys. unfortunately i'm in the US (already in disability thank god). i'm sure there are the same kind of resources in terms of connecting with others here though. i have joined a group on facebook as well as here and made a friend. you are def right that my mental illnesses are just making me react so strongly. i'm gonna have to find a way to keep my anxiety under control maybe go back on benzos if they will let me. you have helped ground me so much. thank you ❤️
Hi Kay814
I did exactly the same as you I cried for weeks I hated seeing my family looking so scared and sad and until quite recently I'd go to my appointments thinking they'd say that'd made a mistake and it was all ok. But once you get through the shock you'll feel more at ease with your diagnosis. I might be a lucky one I've been keeping well for a while now all but a nasty flare at the beginning of the year. I do yoga which really helps maybe give it a go it might help with your anxiety too. I know your feeling frightened and bewildered but it will get better once you gets your meds on target. Good luck x
Hello. I'm so sorry you've been diagnosed with Lupus. I just thought I should let you know that it is not necessarily a life sentence. I was diagnosed in 2010 and mine is now in full remission - 'dormant' in fact. I also have PTSD, and IBS, and Fibromyalgia and a brain tumour, but thank goodness my Lupus has gone to sleep. I was diagnosed with positive ANA tests over the space of about 2 years, along with elevated ESR results, a face rash and joint pain. Now my ANA is negative every time they test it, and my ESR is within normal levels and I don't have sun sensitivity or rash or arthritis anymore. I still have pain, but that's due to when the Fibromyalgia flares up. I live a good life, but I've had to learn to adapt and pace myself.
My PTSD is much improved. I spoke to my GP and got referred to a psychiatric nurse who recommended EMDR therapy. And it worked for me. I feel less anxious now.
My IBS is much improved due to seeing a herbalist. She has helped me do food intolerance testing and then I cut out the offending foods. My general pain rapidly reduced within 2 weeks of cutting them out and my stomach felt less bloated and much less painful too. SHe prescribes herbs to help sooth and heal the gut. I very rarely get an IBS attack now. My Fibromyalgia also improved on the diet.
I've also found drugs that help me (quite a lot didn't) but that took time.
So I hope that's given you some hope for the future. It's a journey and you'll find your way.
xx
wow we have so much in common lol. i'm so glad your lupus got better, im praying it works out the same for me. honestly ibs and anxiety for me are the worst. besides joint pain. i can't afford the ibs medications as my insurance is shit. i try to eat healthy but even so im nauseous constantly, nausea meds don't work really and i smoke too much weed probably to help combat it and get hungry. obv not gonna deny i like being high but i mostly do it for my body to feel better. it helps my vomiting a lot so my ibs isn't as horrible as it once was but even water sometimes makes me sick. i'm working w my GI to figure this out. i avoid things that trigger me mostly but my ibs is extremely unpredictable.
Have you been investigated for migraines? They can often cause vomiting, and there is a strange sub-group of migraines that give you the nausea and digestive troubles without the headache. I never feel nauseas with my own IBS, I just get constipation with random diarrhoea and I've found that taking Buscopan (a cheap over the counter medication) does seem to stop those attacks quite well.
Hi kay814 ,
I'm sorry to hear that you are struggling following your diagnosis of lupus. This is understandable because it is a very uncertain time. I hope that you will continue to use this community for support and information - it is great to see the supportive messages you have received from others already.
I would like to echo the advice that many others have given already and encourage you to chat with some people who have been living with lupus for a while. Hopefully it will be helpful to chat with someone who understands what you are going through. If you'd like to speak with one of our trained volunteer telephone contacts, please just let me know whereabouts you live and I will send you details for some people who are near to you.
We also have regional support groups who organise meetings. You can find your nearest group at lupusuk.org.uk/regional-gro.... These meetings can sometimes be very helpful for family to attend to, as it helps them learn more about lupus and lets them hear more experiences from other people living with it.
If you'd like more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info.... If you need anything else, please just give me a shout.
Hey, for me i found out i had lupus and MCTD almost 10 months ago. I also have lung disease. It was heart breaking for me cause i had to stop dancing in order for my meds to work. I live in NYC so working full time is a necessity unfortunately. Going to groups and finding people who can relate to me was the best. It made me understand that this isnt a life sentence. Support is the best. Try not push people away. Try to keep active. Those people around you will understand if you cant make a certain event. Talk to your GP and Rheumy about how the meds effect you. They can always adjust it for you.
omg i live in NYC too! the struggle is real 😔 i looked up groups in person but there wasn't a lot i found and they're all in manhattan. i'm in queens. thanks for your advice ❤️ i haven't gone to the GP yet bc i know she's gonna freak out and probably make me go on like supplements and shit. after i talk to the rheumy tomorrow i'll make an appt with her
OMG thats so kool. Yeah i come on here to vent sometimes. I live in the Bronx but i work in Manhattan. Usually speak to other patients who have lupus and they send me to groups online. Yeah it is hard to get to face to face groups. The one thing my rheumy told me was 1) dont stop being active. Keep dancing even if its low key. Do yoga (it helps get in a zen mode) 2) when you feel tired or you cant do it, dont stress it and relax. Flares can happen cause you overdo something sometimes. Let your job know and have an understanding on what you have and what your going thru. Unfortunately, in NYC we are always on go but now its the summer go to jones beach and relax hehe. 🙂
Kay & Jay, I was born in the Bronx and also lived in Queens & Manhattan. In NJ now.
I understand where you are coming from. Closest I have gotten to a diagnosis so far is my regular doctor convinced I have CREST. My rheumatologist appointment isn't until August 17, so here I go again, more pain, more nausea, more exhaustion, more sleepless nights, more burning itches and miserable days & nights. Now at 4 years being told it is all in my mind.
i feel you... my joint pain started years ago and i was repeatedly told i was just overdoing it and had tendinitis. i had a lot of random mystery medical problems and it took years for someone to connect the dots. hopefully the rheumy will know more. mine knew what i had just by looking at my blood work and symptoms.
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