Looking for new Lupies for mutual support and understanding!

Hi there, 

I'm Suzy, I'm 23 and I've had Lupus for 12 years, I was diagnosed when I was 11 and was in the last stage of kidney failure. I was diagnosed with CNS Lupus this year after years of symptoms. I also have Fibromyalgia, an underactive thyroid and a few other things. I'm having a massive flare at the moment and will be starting methotrexate next week after trying and failing with mycophenalate. I know it can be quite lonely sometimes dealing with the fatigue and pain and it would be lovely to chat to other people who understand! Please feel free to send me a message, I'd love to hear from you 

Suzy x

11 Replies

  • Hi Suzy, I am so sorry for what you are going through but it all sounds so familiar. When I was first diagnosed I felt so alone as no one seemed to understand my pain and frustration then I joined my local Lupus Group and met some wonderful people who had been or were going through the same as me. The talks from experts and nurses were very useful and informative. I learned lots of tips about coping and little things like applying for a Radar for the disabled toilets! I made some very good friend who I am still in contact with today. The great thing is that we don't always talk about lupus but about everyday things too. But if one of us is feeling down or in pain we always have some one to talk to or visit us at home or in hospital. Just to let you know these friendships were made over 20 years ago so it really is worth a try. Keep strong x

  • Hi Amethyst!

    Thanks for your lovely message. I was diagnosed at age 11, and have now had lupus longer than I haven't! I have been going to my local lupus group meeting for a while now, although not as often as I should because it's too early in the morning for me. I have made a couple of friends from this which has been a great support, although we don't speak that often which is a shame. I am still looking for fellow lupies and I thought I would try out this website after getting no luck from other lupus support networks, and by that I mean no responses!

    Having lupus is now second nature to me, although it still takes me by surprise when i'm having a flare. Unfortunately i'm back out of remission and it is again active, although this time it is CNS lupus and no longer my childhood lupus nephritis.

    Hope you are feeling as well as you can be today!

    Suzy x

  • Hi Suzy,

    If you're anywhere near London, we have a support group specifically for young people (16-26) with lupus that you would be very welcome to come along to. You can find the details of the next meeting here - lupusuk.org.uk/young-people

  • Hi Paul :)

    I'm not, unfortunately! I live in Edinburgh but I do occasionally attend my local lupus support group - it's just too early for me!

    Thank you so much for your message, it is greatly appreciated :)

    Suzy x

  • Hi, I don't write on here very often but I read the posts often. I feel even that helps because I know I'm not really alone. Lots of people who post here go through exactly what I go through and they are amazingly supportive and understanding. Keep coming back. There's always someone here. Xx

  • Hi friendly2013! It's lovely to meet you and thanks for your message!

    Stumbling across this website has been a god send, I have spoken to so many lovely and supportive people all day. Although I have had lupus for many years, it is still difficult to go through a very bad flare and sometimes it really does help to talk to people who genuinely understand.

    How does your lupus affect you? If you don't mind me asking! I hope you are well and that you've had a happy day!

    Suzy xx

  • Hi Bellflowe,

    Lupus effects us all differently doesn't it. The tiredness is my main problem and it really does limit my life, there are so many ordinary everyday things I'd like to do but my body won't let me. I think I get other symptoms like aches and pains or brain fog confusion ect but I tend to put it down to my age (62). I was diagnosed 9 years ago wit S L E. I must have had it for many years before that but was diagnosed with many other things including depression. Of course depression often goes had in hand with conditions like ours. I tend to make little of my symptoms I think if I've had 2 chest infections and a virus in a row I think that's what I've had but really I should be thinking Lupus.

    Take care my friend lets chat again.

  • Hi Friendly2013!

    Lupus does indeed affect us all differently. My aunt has lupus also and although we are similar in tiredness and joint pain, we have many symptoms that aren't the same.

    Often we have symptoms of lupus years before diagnosis, I was so tired all of the time and couldn't sleep properly and my joints were stiff when I tried to get up in the morning. Bearing in mind I was 11 when I was diagnosed! Depression does tend to go hand in hand with lupus, unfortunately. But then I'm not surprised with that really. Constant pain and exhaustion isn't exactly fun!

    I hope you have a lovely, supportive family and you feel as well as you possibly can today. Hugs x

  • Hi I have lupus n just found out about having fibro too this year as well as sticky blood. I get terrible ulcers either end wen I flare it's so painful. If u wanna find me on fb I'm jacclaire or leave me a message here.

  • Hi there! Thank you for your message :)

    I'm sorry to hear that you are unwell. The ulcers sound terrible and very painful! Do you have SLE or discoid lupus? Fibro is very similar to lupus and sometimes it's difficult to tell the symptoms apart. I personally find that fibro affects my shoulders an awful lot - they have been aching and tense for years! I also have an underactive thyroid and very low Vitamin D, so it's difficult to know what is making me tired...all of them I suspect!

    Wishing you a peaceful night x

  • Hi Suzy,

    I am so sorry to hear what you are going through. I also have Lupus and Fibromyalgia, Celiac Disease, Urticaria Vasculitis to name just a few. I can understand what you mean about being alone. It feels that way at times especially when you are always tired and in pain. I guess you now know that here there are a lot like you and are willing to share their experiences. Whenever you feel the need to chat to someone, this is a very helpful site. Hope you get better soon. Keep on keeping on!!! Take care!


You may also like...