My first day

Today I was finally diagnosed as having Lupus, two of my sisters have it, my mother had rheumatoid arthiritis and my father had osteo arthiritis, but according to a variety of doctors, I had growing pains, then it was hormones, then period pains then it was the menopause. I am 53 have suffered with pain all my life, as a child could not attend a school assembly because I would faint. I even had a type of pace maker fitted, because I still fainted, had low blood pressure. I then had to have a radical hysterectomy and this triggered IBS, rheumatism, and lots of other symptoms that I had before, but now were much worse. At last a diagnosis, but what now? I am scouring the net for help - today is my first day.

7 Replies

  • Hi Angela, Well finally! you know what is wrong and now you can move forward! First thing is to accept that you have this condition and very next is to start managing your condition by seeing a Rheumatogolist and start you immediately! on medication.You must also think positvive and want! to have a healthier lifestyle, dont just on a heap and say what now and i cant, you can! stay positive and be patient with yourself because the medication takes time before you see results. Spend your energy wisely, dont over do things, get loadzzzzzzzzzz of sleep especially if you are a working person. Do research and how you can improve your health and this includes a healthy eating plan. All the best and prayers that soon you will be feeling much better and more positive. Take care

  • Very good advice from Charz001, I would also add that your sisters must have lots of experience with medication and with what works or does not work for them. That might be very useful to you.

  • Hi Angela7m,

    If you would like I can send you one of our free lupus information packs? If you think it would be helpful just send me a private message or email with your name and address.

  • It is a relief, finally being told that you definitely have lupus. The next task is learning all about it, although I don't think that anyone can ever know all there is to know about lupus as it does like to keep us on our toes. I agree with Charz - acceptance is key, although it can be very hard to do.

    Whether you want to shout, scream or celebrate, post and we'll all be there for you. :)

  • Only to add to already good advice, start keeping a diary of symptoms on a daily basis - symptom, degree of pain from 1-10, how long it lasts, medication you're taking at the time, effect of medication you're on. That will help you summarise your illness trend when you go see your rheumatologist and helps the rheumatologist in putting together the most appropriate treatment for you.

    Be strong - once the euphoria of having a diagnosis passes, you'll probably start to panic I relation to the future. Try not to - although this illness is unpredictable, the right treatment will help controlling it.

  • We are always here if you have any questions or worries- Welcome to the Lupie world, we are a lovely friendly , funny helpful lot, probs best people you could ever meet as we understand and GET IT ! :)

  • Thank you to everyone who has replied to my blog. It seems strange now, but before I was diagnosed I just thought I was old, now I know it is the SLE and that probably the medication will help in time. I am keeping a diary trying to keeppositive and trying to achieve a healthier lifestyle. The rheumatologist put me on Hydroxychloroquine and I am getting some side effects, nausea, headaches and an upset stomach, but I am hoping this will wear off as my body gets used to this medication. Thank you all again.

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