Thought I'd sign up to this forum as when I was having strange symptoms and waiting for test results before my diagnosis, this site constantly cropped up relating to my symptoms with advice and support.
I'm 23 and was diagnosed with SLE on the 4th July. The past month since my diagnosis and around 2-3 weeks before has been hard. Waking up in the middle of the night with excruciating joint pain in my fingers and aching biceps and tingling in my fingers means I get so little sleep. I have had a non-itchy skin-coloured bumpy rash on my upper chest and breast for 6 weeks. Does anyone else get this? Doc prescribed ointment 2 weeks ago believing it was a yeast infection but it still hasn't gone.
Just wondering how everyone else managed to cope for the first few months as the pain and rash is making me very unhappy and caused my self esteem to plunge.
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AmyKG
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I was diagnosed about 18 months ago; my main symptoms being shortness of breath and painful joints in my hands. The first few months were difficult, especially the uncertainty of it all. What helped with the symptoms was that after several months on hydroxychloroquine and prednisolone, they did reduce. But much more important psychologically was the support I got on this forum - this was the only place where people didn't treat me as if I was speaking an alien language.
The other thing was that I have tried always to set goals for myself - things that make it worth getting up in the morning for and that I can look forward to making progress with. They are very different to the sorts of things I used to do when I was well, but still meaningful. x
Thanks whisperit, I'm holding out for the hydroxychloroquine to start working soon. I know it's only been a month but the mornings are so painful and it means getting to work 2hrs later every day and making up time after work which is exhausting.
Your advice about setting goals seems really useful, I feel like I need a bit of a push to get me out of this rut.
Welcome to our lovely site. I hope you will find it informative and supportive.
It's very difficult in the early days of diagnosis. It's a rollercoaster ride of emotions and symptoms. Accepting this diagnosis is tough. So take time to come to terms with it. Be kind to yourself and be patient with yourself. Don't push yourself too hard. Get lots of rest. And don't feel guilty for that.
I was wrongly diagnosed with SCLE in 2013 and I was put on Hydroxychloroquine 2 x 200mg a day. Nothing else. In hindsight, the doctors totally failed to grasp how low I had sunk with my symptoms. Although some skin issues seems to be clearing up within 3-4 weeks, really it was a year to feel I was really getting somewhere (by which time Rheumy was suggesting I lower my dosage!). I really wish I'd been firmer - but I didn't have the knowledge then - and asked for a course of steroids to overlap with staring hydroxy, in order to give me extra help getting out of a bad flare.
Lots of people here seem to have courses of steroids when diagnosed but I was never offered. There are obviously risks in taking steroids - lots of posts and info here on steroid usage - but a short course may help you now, steroids act faster than the hydroxy. They might get rid of that rash? Is it a photo sensitive rash? Worth asking your consultant or GP re steroids for it??
Also, if I could have given myself advice back then, the whole struggle with the diagnosis, the emotions and life implications and meds etc, I would have asked for some time off work to help adjust. But I battled on. The way I'd been brought up. You go to work. You don't let people down. Hard work ethic. I know now that that doesn't work with lupus. Pushing your body too hard doesn't pay.
I know we are all different. We all have different symptoms. Different treatment plans. Different ways of coping. So you must do what is best for you. We can only share our experiences and thoughts in case they do help each other.
Take a look at the Lupus UK website. They are an amazing support to so many of us here. Membership is a nominal yearly fee. There are great information leaflets on their website and they sell a good selection of books too. I gave a couple to my husband and Mum to read. They were much more understanding as a result.
Stay in touch. Let us know how things progress. And don't be afraid to ask. We all understand and want to help. You aren't alone.
Thanks for your comment, it really is lovely to just have a bit of support from people who empathise with my situation. I don't think I've quite accepted the diagnosis yet, I keep thinking that SLE is so rare and it must be something more common that I have and I must have been misdiagnosed.
The consultant pointed out the rash to me when she was doing the diagnosis, I thought it was possibly heat rash so didn't think much of it at the time but she was quite concerned yet not concerned enough to give any sort of ointment at the time. It was only until I visited the GP 4 weeks later and told him it still hadn't cleared up on its own that he gave me Clotrimazole, which hasn't made the slightest bit of difference. I don't think it's due to the sun as it is on my chest and both breasts and spread to areas which would be underneath my bra so not in direct sunlight. I think the doc was hesitant to give me steroids as he thought the rheumy would have prescribed something if they thought it was serious. I also have steroid ointments for eczema on my hands so I may try this on my chest and see what happens.
I've been having a lot of trouble contacting the rheumy since my first and only appointment where they diagnosed me. They said I would need an appointment in 2-4 weeks after initial diagnosis to see if the meds are helping. That said, they then booked my appointment for 21st December (almost 6 months away!). I've rang them multiple times and the line is always "busy", I got through once and the woman said there was complications getting hold of my rheumy and they would call me back ASAP (that was 12 days ago). Feel like I'm getting zero support from them which is frustrating and upsetting.
I feel the same as you regarding the work ethic, however my supervisor has been really supportive and understanding about my diagnosis and has said I can have time off whenever. I'm studying for a PhD in haemato oncology and my supervisor specialises in blood disorders so has a lot of contacts who are studying lupus at the moment and so they all understand how the symptoms affect individuals and what I'm experiencing at the moment. That said, I'm coming towards the end of my first year of studying and didn't want to take time off as I have an oral exam and report to hand in at the end of September and I didn't want my SLE to affect my work
Going to have a look at the Lupus UK website now as I'm feeling swamped and feel I could really benefit from the resources and support you mentioned that they provide. Thanks so much for taking the time to chat, it really means a lot.
Having lupus now for almost 5 years, stay positive and don't give up. I have a degree in Healthcare and trust me, at times it is hard, and sometimes lonely cause people don't seem to understand this disease, and you will get some people say, "you don't look sick", and of course I laugh and tell them that you don't have to look sick to be sick, true story.
If you cant get any support for anywhere, just know you have a friend with lupus with kidney problems at times in Fort Collins, Colorado.
Thanks Terri, your support means a lot. I'm just finding it a little hard to adjust at the moment and every day is a little different but I'm trying to stay positive and take it in my stride.
Sending support to you too from across the pond! Hugs and best wishes.
Have you started any treatment to help manage your lupus? It is important to bear in mind that certain medication like hydroxychloroquine can take up to six months to exert its full effect.
Sometimes, certain situations can be overwhelming which is why talking to someone can help relive worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a local contact to speak to, you can email me at chanpreet@lupusuk.org.uk .
If you live anywhere near London, we also have a young people (16-26) support group which meets every couple of months, and you would be very welcome to come along. You can learn more at lupusuk.org.uk/lupus-in-you...
We offer a free information pack that contains helpful factsheets and guides which you can download or request here: lupusuk.org.uk/request-info...
Please let us know how you get on, wishing you all the best.
This is what I am starting in Fort Collins, Colorado. I am getting the word out and have even met some great people here in the same area that I am in and don't have a support group so we talk to each other and trust it helps. There are so many people out there with lupus that don't someone to talk to or just to get something off there chest. Like, why people say to them, " well you don't look sick", and I just tell to remember, it is not their fault for thinking that, cause we have a been raised on that, you look sick, you are sick. But now with lupus and other auto- autoimmune diseases , it is mostly inside you that does not feel good and of course it effects you mentally and physically, and not having some support, do not help at all. So you have some one here from the states and stay strong, and god bless.
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