just been diagnosed

I have SLE. i was only diagnosed about a month ago, I've been back to my gp a few times with some issues but they cant seem to answer my questions and just refer me back to hospital. No one can seem to tell me how this will affect me long term and if the symptoms I have now will go away in time. I'm feeling a bit lost and confused tbh dont really understand this lupus thing, looked it up on internet but that just confuses me more! Anyone else feeling like this?

8 Replies

oldestnewest
  • Hi, It is so hard to get your head around at first. If you look up Lupus UK they have lots of leaflets on line that you can read. Or you can contact Paul at Lupus UK by messaging him and they will send you information through the post. If possible try to read from reputable sites, such as Lupus UK, Lupus Site. You can buy books too from Lupus UK.

    I think everyone differs in the way lupus affects them and this site is really good for giving first hand information as to how it affects individuals. I have only been diagnosed since January too though and like you still feel I am getting my head around it too.

    Thinking of you and hope that you also get more information from the hospital nurses too.

    Take Care x

  • Thanks mstr for your kind words. I have signed up for lupus uk and am waiting for some info. When I go to my GP i just feel they dont understand the condition and make me feel like I'm waisting their time. I guess I'm just frustrated that no one seems to be able to give me any answers.

    I hope you are coping with things ok and that you are taking it all in alot better than I am!

    x

  • Hi there, What I have realised is that although my GP surgery has been great I now tend to view them as a kind of referral point. Now I have got into my head that they can't possibly be specialists in all areas that kind of helps. So, yes I go to them when I am unsure or have an infection but I now tend to ask questions on here from people who have lived with the condition a long time and have so much knowledge. I also save my questions for rheumatology visits or when I am seeing the specialist rheumatology nurse.

    I guess no one knows how lupus will target an individual completely. Some may have skin manifestations, other joints or both - for others it may attack other areas, such as muscle, and internal organs. However, the real key thing I am now learning is that medication is so much better now and there is lots they can try. Also take heart from people on here who have been managing lupus for 20 - 30 years. They are still here. The key area is don;t think any question is irrelevant - ask the specialists as then they can keep your conditions controlled. If one med doesn;t work then say and try and work together to find one that does. Flare ups I find can be hard when it's a big one - now I just 'down tools' and do very little so that it will pass more quickly (not always) but I know the storm will pass.

    I'm still learning but I have to say I'm not so afraid any more. For all it's crap it has made me look at life differently, value it more and slow down and smell the roses. Keep in touch with us all as we all are there for each other x

  • Here's the thing, you need to bear in mind that there are no answers, the medical profession still hasn't found out what causes lupus. All they can tell you is what other patients of theirs have experienced and some statistics but that doesn't mean you are going to have the same symptoms or that you'll be so lucky/unlucky as others.

    I know it is a lot to take in, you want answers and clear indication of how bad is going to get and how long you have to live, I had the same reaction when I got diagnosed. But each person is affected differently, so you'll need to hope that you'll bring the lupus under control and then keep it there and live your life.

    You will get through many stages of fear, despair, anger, sadness, weeping for lost health, so don't beat yourself up about it, it is normal. You will see that there are many weird symptoms with lupus, weird by comparison to a healthy person but probably "normal" to a lupus sufferer. If you do, search this site throug the search engine or by looking at the Tags to see what has already been discusses and if nothing is there, ask it anyway here, it is a great forum.

    It will take you time to come to terms and your family might not understand what you're going through but we do, so we are here to help.

    I know everything is confusing at the moment but give yourself time and be good to yourself x

  • I was diagnosed in March 2012 - one year ago. I remember so well the many sad emotions, the uncertainty, the worries .... Whilst I had great support from Rheumy, GP (who admitted they didn't know much, but took all my complaints seriously and addressed my symptoms & infections promptly)and dermatologist, there were few longterm answers and explanations available from them (for reasons as explained by Purpletop above). I was lucky and responded well to treatment, therefore went into remission by December 2012. I felt my life saver was gaining my own knowledge and doing my own research and reading - The Lupus Book - and also LupusUK are both great sources of reliable accurate information. At times it was difficult to read online of all the experiences of people who didn't get the medical support/treatment they need, or whose illness simply could not get under control, as that had left me more worried. Other people's positive, improved health stories and periods of remission, made me realise there are also many people who live with SLE well under control. My heart goes out to you. For me REST REST REST seems to have been a great help in getting better, and an incredibly supportive husband, manager and friends. Good luck, now that you know the name of the illness, effective treatment can hopefully start and I truly hope that your road to remission will be quick. x

  • Thank you for taking the time to respond to my 'question' and the responses are so detailed. I am very glad that I came across this site, it seems there are some wonderfull people on here.

    I guess its all frustrating, the uncertainty for me is the most difficult thing to deal with. I am a single dad, have been for 12 years, I run my own business so I have had to be able to plan ahead as best I can over the years. My Lupus is affecting my brain, memory in particular, my sight, skin, joints etc etc and I am just worried, not for myself particularly but for my kids and employees about how this will affect them in the months ahead.

    I have spent hours reading through the messages and blogs etc on here and have found them very usefull. I have been through some difficult times in my life and came out the other side, so I think I will aproach this in the same way, keeping positive and taking one day at a time.

    Once again thank you for giving me your time and responding to me, that has helped more than you could ever know.

  • You've achieved the biggest step already, I.e. getting diagnosed. The right treatment will take care of the memory issues, fatigue, joints, etc. When I was diagnosed I could barely walk without stopping for breath every few steps and i cant describe the memory and brain fog I had at the time but treatment brought that under control. Try and keep a daily diary of your symptoms so you can summarise it to your rheumatologist at each consultation. Check illness trend this way so that the rheumatologist understands whether medication works, or needs tweaking. Diet is crucial, exercise (once you can attempt it) is again material. Anything that calms down the immune system is good. Many of us follow anti inflammatory diet ( as Zoeblu says below) with great results.

    Try and be positive but do not overdo it. If you have responsibilities as an employer and father, you need to start thinking how you can delegate as much as possible and how you can reduce the stress. I know it will be unthinkable at the beginning but your body will tell you when you need to slow down because despite medication your lupus will not calm down. If you want to continue supporting everyone you will need to do it in a clever way that doesn't stress you out. Think how you can achieve that, implement it and you're giving yourself a better chance to recover.

    All the best.

  • Hi I was diagnosed last July and have been flaring every time I try and come off of the steroids. Like you I have felt very lost and confused! Since February I've been following an anti inflammatory diet. My pain has decreased and my energy has improved. I feel like I have taken back some of the control over my life that Lupus has taken away. So this is my third attempt to come off steroids - only time will tell whether the diet is working, but I feel sooooo much more positive and determined to put lupus back in its box. I've also lost a stone in weight which is an added benefit! There is a lot of information about anti inflammatory diets on the Internet (most of it American) but the principles are not grain that contains gluten, no refined grains like rice - keep it whole grain, no cows diary as its feed in grain, no refined sugar, no caffeine. I know that sounds tough but actually with the right recipe book it's not and I've discovered some really tasty alternatives!

    Good luck Zoe

You may also like...