Hello - New Here

Hello. I saw a rheumatologist yesterday who said he felt my symptoms fitted lupus more than anything thing else, although I am still undiagnosed as I don't meet enough of the criteria. My main symptoms are bilateral swollen hands, every morning, and random pains. I have a positive ANA and low white cells. I also have type 1 diabetes and hypothyroidism. I don't really know anything about lupus and some of the things I have read make for scary reading.

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  • Hello there! Don't be scared. Very many of us here are on the same journey. You will find a lot of friendly help and support on the forum. It can be a shock ( I genuinely wondered at the time why a referral to a rheumy was needed) It can make your head spin initially, but,you will find lots of useful information here. X

  • I have literally just come home from a rheumatology appointment who said she suspects it may be lupus and is sending me for tests. I don't get the butterfly rash though, or swollen joints. I have a lot of autoimmune issues and joint pain, but thought that was ehlers danlos syndrome. They all seem to over lap!

  • Hi newbs36,

    A possible diagnosis of lupus may appear scary, but it is important to stick to reputable websites for information (such as LUPUS UK, NHS and Arthritis Research UK). It is worth bearing in mind that lupus presents differently in everyone and so while you may read about a wide range of symptoms, it does not mean that you will get them all. It is also worth considering that many people who use online forums like this may have more difficulties or severe symptoms than some others and be in more need of support. It is therefore not representative of the lupus community as a whole and many people with lupus manage very well with treatment.

    If you would like more information about lupus, we have a free pack which you can request or download at lupusuk.org.uk/request-info...

    We also have our full range of publications available to read/download at lupusuk.org.uk/publications/

    In addition to this forum, if you would like to meet/chat with other people with lupus, we have our Regional Support Groups - you can find your closest at lupusuk.org.uk/regional-gro... - and we have trained volunteer telephone contacts who I can put you in touch with if you'd like.

    If you need anything else, please let me know and I'll do my best to be of assistance.

  • Welcome and please dont be scared. Everyone has a different experience of Lupus and no two people will experience the same thing.

    My Lupus was diagnosed two years ago so I am still in the very early stages of working out what does and doesn't work for me. I have had to make very big lifestyle changes but that is probably because I went undiagnosed since birth. Others who develop the condition and get treatment earlier may fair better. Essentially we are all different and have different symptoms.

    This site is a brilliant place for advice and support. If you have a question or strange symptom and think you are alone, chances are loads of people on here have had the exact same thing and can help. So dont hold back in asking for help.

    Also when I was diagnosed I thought my world would end if I had to give up work and be on meds and have less of an independent life. You know what, those things have happened BUT life goes on in a different way. I'm not suggesting that this will happen to you but what I am trying to share with you is that all my worrying didn't change anything. And as stress flares Lupus please do everything you can to look after yourself and stay as relaxed as possible. Know that this is an open safe place to seek support. We're all here for you.

    Good luck.

  • Thank you for all your comments, I really do appreciate them all.

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