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

13 Replies

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  • Oh Suzie.... Bless us heart bab...!

    I understand..... Though I class myself very lucky, as mine is mainly the skin.... Discoid/SCLE.... X

    I find the hardest to deal with is the tiredness.... No one really understands.....' You have to fight it!...' I could scream!!

    Just remember.... You are not alone chicken..... !! X

    Xxxxx

  • Hi Sempa! Thank you so much for your lovely message :) I know how you feel about the tiredness, it is horrendous. You know, my mind is so active and I have so many hopes when I wake up of the things I will accomplish in that day - but my body just seems to desert me sometimes, although it is all the time at the moment. It is so frustrating but I have to tell myself not to be so hard on myself! My Aunt has discoid lupus and it is quite distressing for her. She gets blisters in her nose and ears and her skin can be red and hot and sore. Her eyes also sting. It's a horrible thing! I feel for you, really I do.

    Thank you for your kind words, I am so happy to have met you! You are also never alone :)

    Sending hugs, Suzy xxxxx

  • You brought tears to my eyes little one. I am 52 and was diagnosed with Lupus 5 years ago after being sick for two years. SLE . It is hard and I have flares often. I have never been symptom free. I am so thankful that at least I was older when I got sick. My heart goes out to you young people who are hit with this and you have a tough one. I hope you have many people around you who are supportive and understanding. I do understand that no one can truly understand how hard this is everday except for those of us that have it.I will be here to talk anytime.

    Prednisone my best friend or enemy?

  • Hello Atibrat! I am so happy to hear from you and yet so sad to hear your story. I am sorry you are so unwell with your Lupus, do you find relief with anything? For me it is plenty of rest in the evening and a cup of tea. There's something about tea that I find so therapeutic! Although of course some days nothing helps. My best friend has always tried to be helpful and listens to me when I'm having a bad, just as I do for her. Although sometimes she calls me when I've told her I just need to rest and she won't get off the phone for 2 hours - exhausting! I have a very supportive family and an aunt who has lupus. However, I do find that they sometimes expect too much from me. If I'm too ill to leave my house for ONE day or even afternoon (and I really try to get out even if I feel awful) they will make jokes about me being a recluse or a 'hermit' and tell me that I need to 'try'. That is the most infuriating thing, being told to try.

    Prednisone is definitely a double edged sword. What side effects do you have from it? I found myself being irritable, hungry and swollen!

    You have made my day and I am so happy to have met you :) And I look forward to many more conversations with you!

    Sending hugs, Suzy x

  • Bellaflowe....this forum is an excellent place to start for support. I was diagnosed with low grade lupus at 51 this past April. I come on this site daily to read and post. The support is immeasurable. My own family does not believe I have lupus. I started taking digestive enzymes in April and a natto k (prevents sticky blood). My bloodwork showed I had no positive Ana, no lupus this past AUG. I don't believe I am cured as I am still tired, joint pain, nauseous, tissue pain, etc....I still come on even though rheumy said no lupus because I feel I still have symptoms....I hope at such a young age you can find the strength to fight this disease, and look for answers through your doctor and your educating yourself to all possible treatments. It's ok to have days when you can't fight. One day at a time....

  • Hello Natura! Sorry for the late reply but thank you for your lovely welcome :)

    I'm so sorry to hear of your story. There is nothing worse than being made to feel like you're making it all up. What do your family have to say? And has your rheumy discharged you or are you still under their care? I don't imagine you can be diagnosed with lupus and then undiagnosed - that is terrible. I heard that they were doing that in the last year for patients who didn't quite meet the lupus criteria or their symptoms weren't severe enough. It is a disgrace. Lupus is not curable, it is only managed and if you are still suffering then something isn't right. How were you originally diagnosed?

    I have been fighting lupus for 12 years now. I've had it longer now than I haven't had it. Recently it has come back out of remission and it is now neurological involvement I have to deal with. I'm just fed up really - but it helps to talk to people who understand!

    Keep strong and just know that it's not all just in your head x

  • Bella...I actually was originally diagnosed when I found out I had scarred kidneys from a sono being done on my gall bladder because a clinic ordered one for me when I told him I had a bloated feeling in my right ribcage. I mentioned to sono technician that I really believed there was something wrong with my kidneys since I ended up in ER not able to urinate. Sono showed scarring on both kidneys which lead me to kidney dr. He told me it was minimal, and that I would be fine. After telling him all my symptoms and explaining that my brother has intrinsic circulating anticoag lupus, he listened and tested me for lupus. Turned out positive ANA 1:80 , low end lupus. 5 months later, rheumy tested. Negative lupus. Wanted me to see him in 6 months, I think. I cancelled. He just dismissed the symptoms I had saying if I was able to exercise and walk, I was not sick. I liked his positive attitude, but didn't like him dismissing my symptoms. My family all believe it's just getting older, not lupus. Maybe, maybe not. In the back of my mind, I am worried. Thanks for listening. Hope you are feeling ok.

  • I am still amazed at the incompetence and negligence

    of some doctors. How awful for you. I am a firm believer that you must take charge of your own care and be persistent with doctors, even if it is awkward. Nobody likes confrontation (well, there are a few nutters that do!) but we must stick up for ourselves. I had an awkward situation with my rheumy a few years ago when I told her I wanted to be referred to a lupus specialist in London. She threw a tantrum and said, 'Why do you need to see another doctor?! I am a specialist!! Oh I take it I'm not good enough for you?!'. She then started crying and saying how disappointed she was in me. I was so uncomfortable but more annoyed than anything! I thought how dare she make me feel guilty about wanting another doctors opinion! So I persisted until she backed down. And because of that I know see a wonderful doctor in London (as well as my rheumy at home) and because of him, I was diagnosed with CNS Lupus which had been allowed to get worse because my rheumy ignored my symptoms. Now I am very much trial and error with my medication to try and get my lupus under control and I start methotrexate on Monday - so fingers crossed!

    The moral of the story is, if something doesn't feel right, it probably isn't. Perhaps it is lupus, it certainly sounds like it. A friend of mine is lupus diagnosed and she doesn't have positive ANA. Are all your other blood tests normal? Families always think they know best. Sometimes it's good and sometimes it's infuriating!

    I'm here anytime to talk, please don't hesitate to message me. Suzy x

  • Thanks Suzy....

  • How are you today?

  • Suzy...feeling ok...got a sharp head pain last evening that scared me. It was short. Back pain better today even though it's damp and raining. Just made myself an anti depression smoothie just to help me get thru the day. I am getting some nerve stings here and there...don't know where these come from. Woke up out of a dead sleep two nights ago from pain in my right rib cage. Every time I breathed in deep, it hurt. Did small circles around my intestinal area (something my sister does for her diverticuli) and the pain went away...may have just been gas. Ha! Hardest thing is feeling new pains or old ones and trying to stay calm. How are you feeling today?

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked Suzy!

    I am sorry to read that, in your case, lupus began early. It is also the case that some families have more than their fair share of autoimmune diseases and unfortunately, your family is one. It is also unfortunately true, that many of us have more than one autoimmune conditions. Additionally, a percentage also suffer from fibromyalgia which complicates matters. It is sometimes hard to know if the pain is lupus or FM. If it is lupus, the corticosteroids will help; if it is FM, the steroids will not make any difference! Lupus is a disease of 1000 Faces ie it can mimic almost every disease known and we are frequently told how "well" we look, when that is not the case.

    I can say that MTX is a well tested drug and is used for treating rheumatoid arthritis. RA, MS and Type 1 diabetes are genetically related to lupus. I would recommend to you the injectionable form (unless you do not like injections. There are 2 main reasons. First, it reduces nausea and sickness; second, there is some clinical evidence that this works better than orally. You must also take Folic Acid EXCEPT on the day you take the MTX. It can take some time before it becomes effective and you will also need monthly blood tests to ensure the MTX is not causing any problems. There is every good reason to be optimistic.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    Be well!

    Ros

  • I am very unwell, Suzy, but I will think of you & maybe be well enough to chat properly sometime.

    Very good wishes - I too feel lonely, isolated, abandoned by the 'health' 'service'; and finding it impossible to deal with the pains & many, many other symptoms...

    Love to you, & best wishes,

    Aileen. x

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