So scared :(

I have recently been diagnosed with lupus and I am so scared. I feel so depressed all the time, I can't stop thinking about dying :( I have tried to speak to the rheumatologist about how he thinks my life will be from now but he doesn't seem to want to answer these questions. The lupus has affected my heart and lungs. I guess I want reassurance really. I mean can this thing be brought under control or is it likely to kill me? (sorry for being so blunt, I know you all have same illness, but I need answers). Thank you xxx

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  • It is a normal reaction, we have all been there. The thing to remember is that we are all different and this illness affects us differently, which is why doctors will not be able to tell you much at this point in time. The good thing is that you have been diagnosed and that once diagnosed you'll be able to start aggressive treatment in order to bring lupus under control. Treatment will take few months before you can see an improvement, so you will need to be patient with it, have a sensible diet and rest as much as you can. Slowly you will start feeling better. During this time you'll have all kind of symptoms and reaction to treatment - keep an eye on this forum because whatever symptom or fear you've got, someone else here already had it and you can learn a lot about coping with it. Try not to panic and believe me that I know how difficult that is. I know you're afraid of dying but think of it this way, if you haven't died whilst you were being diagnosed, the chances of surviving are now much greater given that you will soon start treatment. Just take it one step at a time and remember that stress exacerbates lupus, so be kind to yourself.

    I know that at the moment your mind is going crazy looking to comprehend the enormity of this. Try to work with lupus, rather than fight it, it will be easier for you in the long run. You will find yourself grieving for who you used to be and for the health you used to have, that is normal but meanwhile follow the treatment suggested and be proactive about keeping your doctors informed and try and find ways to delegate chores or activities you used to do before so that you focus every bit of your energy on getting better.

    And don't forget we are all here to help. Hugs.

  • Hey slow down there...most of us are too....

    I'll share with you that I've done nothing but cry the past two days...but it'll pass and

    I don't think there's one of us that haven't had that 'it's all useless' feeling.

    Your Rhuemy can't answer your questions because everyone is different.

    This disease is so diverse, that although we can have similar symptoms, they can affect us in different ways and with different degrees of pain. But there are medications out there that can help with the symptoms, have you been prescibed any yet?

    Can you talk to your G.P.? a family member? a friend? Explain how you feel and don't leave anything out.

    Check to see if there's a Lupus group locally, and use us for support.

    I won't lie and say it's easy, it's not, but we support each other, so please use this site, it's really helped me to realise that I'm not on my own.

    Yep still crying, but smiling too.

    Lots of gentle hugs,

  • The doctors don't have all the answers after all their not the ones living with the disease, i walked out the gp's surgery like a zombie in shock and tears flowing down my cheeks when i was told i would end up in a wheelchair and dead when i was 49. I'm happy to report i have never been in a wheelchair, and i celebrated my 50Th birthday in February 2013, i did have cancer last year (which were prone to) but im okay now, my sister has lupus and like you, has a hole in heart and severe lung problems. lupus can be controlled, and like others have said this takes time. the only problem I'm having is trying to find a job.

  • We all having different degrees, some are having good days, and some are not. One thing you need to remember is this is not a death sentence, and life will continue. The more stressed you feel the worse it will feel. I like this disease to a fight, fortunately (if we can use the word) for us we know we have something wrong, therefore it can be managed. The focus should be on you being happy, my nan, had a hole in heart and she had 6 children all delivered naturally, I have not been so lucky, with lots of problems, and this is how we found out I had lupus, after suffering with different problems throughout. I have had my diagnosis for 10 years and it is managed now. Life is not over, you need to take each day as it comes at the moment until you can start to plan again. I can not stress the importance of planning for a happy future. You have a diagnosis, tick, now you can work out strategies or focus on enjoying your life, soon to be a tick. Get support, surround yourself with motivated people who will help you feel well and happy, plenty of rest and plenty of fun.

  • Now im scared...my breathing has become increasingly more shallow..now I have pain in my left lung OR breast bone...im not 100% sure which but around that area. I thought I was just unfit as I have put on so much weight. I now have to breath through my mouth alot of the time to take in more air. I was diagnosed with lupus when I went for a regular bloodtest as I take gabapentin and lamotogine and they monitor me for side effects. I went to hospital and Dr told me nothing. What lupus was or what could be done if anything. When my next bloodtest a few weeks later came back clear...then I was told I was better.that was it. I have had many sypmtoms since but my lungs are the most worrying and im going through divorce due to a violent relationship. ..so the stress is unbearable. I had no clue you can die of lupus even though my mums breathing got bad and she died of kidney failure.she too had been diagnosed with lupus but like me..it was never followed up. Im not being treated as Drs tested me and said my meds can cause shallow breathing and thats what causes it...but ive been on meds a long time and never had lung problems. This post has scared me.

  • This is how mine started hun, I had terrible pain in my left shoulder, ribs, chest etc (it seemed to move around too, sometimes even in the right shoulder), and very short of breath, in fact when I laid down I felt like my chest was being crushed and couldn't breathe, I also kept having a raging temperature. This went on for weeks, in fact it started in November and I kept being told I had a virus, this went on til feb when they decided to do a blood test to check for blood clot, this came back very high and was sent straight to A&E. It was there that they found my left lung was full of fluid and all round my heart! They admitted me and told me it could be serious, they were testing for cancer :( It was awful. Anyway, even after they sent me home and I was feeling a bit better they carried on with the tests because they wanted to find out what had caused this, and that was when they discovered the problem with my immune system. I have never been right since. The fluid keeps coming back around my heart and gives me pain and makes me feel unwell, and I have been admitted to hospital again with it since too.

    I think its important to get things checked out, you know best! I kept telling my gp I was worried about my heart and he insisted my heart was fine (without an ecg!).

    If I were you i'd go to A&E with chest pain and they will give you chest x-ray and ecg and at least then you will know and it can put your mind at rest if it is all ok!

    Good luck xxxx

  • Hi there

    Sorry to hear this; | think you need to get yourself to your GP, and ask for a referral. Its simply not acceptable to be diagnosed, and left to deal with it with no follow up in this day and age.

    PLEASE, be strong, ring your surgery, and book an appoitment - a double appointment if possible. Take someone with you that you can trust - and write it down so you dont forget anything.

    See a different GP if you have to, but with your mums history, let alone all the stress of everything else, you deserve the time to explain your worries, concerns - and be listened too - and given the treatment that we all deserve.

    Please ring - today - let us know how you get on, and a hug in the meantime x

  • Thank you very much everyone for your replies x It took so much courage to come on and post, I have been looking at this website and others for a couple of months now, then I just get scared and close the page. I find it easier to pretend I don't have anything wrong with me because the truth terrifies me :(

    I have been prescribed loads of medication, which doesn't help because its a constant reminder how ill I am every day, and I hate taking them!

    I just really hope they get this under control. I have been so poorly since November, buut before that I just thought I was lazy and managed to get on with things x

  • Zebedee01 im sorry for you that fear is effecting your way of thinking....hold you head up high and fight hard against this awfull grossly misunderstood condition. The only way is up for you now...live life for today..have fun, smile and enjoy yourself..even on your bad days..put the thoughts of dieing to the rear of your mind..after all..we are all born to die and it could be ..(god Forbid) you could die an accidental death..so grasp life with both hands even with a weak grasp and fight FIGHT ((((Fight)))) best of luck hun.

  • Thank you to all for your reply to my comment..I will nag GP until im heard and may well try and get to A&E worst case scenario. ? & hugs to you all xxxx

  • Thanks sharonleane xx Get yourself checked out, good luck xxx

  • Hi zebedee, you have come to the right place for reassurance and sometimes the best information you can get as the rest of us have all been there and done that we can certainly sympathise with all the feelings going on in your head as well as the physical symptoms going on in your body. Rest assured that Lupus is no longer the death sentence that it used to be and we can live a very full and active life thanks to modern medicines - it may take a while to find what's right for each individual and we do discover that unfortunately some drugs don't suit us along the way but it is so worth it once we get settled on whatever is good for us.

    I would however like to point out however that there is one thing that you can do to help yourself in everyday life that if you are found to be photosensitive which lots of us are will make a lot of difference. Ultra violet light makes symptoms much worse whether it is from the sun, low energy bulbs or flourescent lighting. I am so sensitive that when I changed all my lighting indoors so that I had nothing emitting U.V. indoors I improved a huge amount and every time I go outdoors in daylight I cover up completely - gloves, scarf, long sleeves, trousers (thick enough to block the rays) and a factor 50 on all exposed skin. This was all on the advice of my dermatologist and made a huge difference to my symptoms. Manuka honey taken one teaspoon every morning is also found by some to be beneficial.

    At the moment I am living a full and active life and know of others who manage to work and have a very fulfilling life so lupus does not have to put an end to decent quality of life, I have just tweaked certain parts of life to fit it in. Please try not to live in fear of this disease you can lead a very full and active life. Being diagnosed with something like lupus means your life goes through a lot of changes and you have an emotional roller coaster ride to face, shock of the initial diagnosis, grieving for the way life was and the way you wanted to live life and changes that have to be made. You may feel angry that you are ill and have to take medication there is confusion over what it is and that you are frustrated with doctors and everything going on. All the hospital appointments might make life at work difficult and all this while you are in pain and suffering all the other symptoms and feeling knackered all the time. Yes it does feel difficult and like you have a fight on your hands but don't fight it love, acceptance is so much easier, it may take a lot of tears and feeling like shouting and screaming and wanting to blame someone - a stress pillow is good here... you can beat it up and bury your face in it scream and shout with nobody hearing and it might make you feel better, it works for some and you are not physically hurting anyone.

    Remember if you think of things you want to ask at hospital appointments write them down and take the list of questions with you, if you don't when you get home you will think of them and wish you had remembered.

    Good luck and I hope that you can find some reassurance from here and chatting to your fellow luppies. ;-)

    Madmagz x

  • Thank you so much xx You lot are so kind, you are making me cry :( xx

    I do not seem to be sensitive to the sun (thank god), I do burn very easily and get headaches but apart from that I don't seem to be affected by it x

  • I feel for you, The best thing you can do is be active in your medical care. Keep asking questions !!

  • I was diagnosed 2 years ago and like you my lungs and heart were affected. I was hospitalised for 5 weeks (on oxygen) to get lupus under control, like you i felt i was dying and probably i was not far off! I felt so alone, scared and depressed with a handful of leaflets to refer to which could answer all my questions? Dont think so! everything in them was medical fact but nothing about how my world had been turned upside down, fear i wouldnt see my babies grow up and mourning the happy healthy identical twin i used to be, instead i was now a chronically ill twin who still cant really share my fears and anxietys because i dont want my sis to realise how serious this illness really is. 2 years on i am alot more positive, the plaquenil keeps my lupus quiet at the mo! I am a happy mum and sis again, ive accepted my illness and although each day is a challenge i wake up most days smiling and i refuse to let lupus beat me. You will get stronger, believe me, ive been there. I have regular pulmonary functions and heart scans yearly to keep a check on things, and all is good, thank god. Im sure they will keep a close eye on you too, i know its not the best news to get, but be thankful you have a diagnosis and the treatment works :) xx.

  • Thanks sophie, that's really good to know xx

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