LUPUS UK
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Feeling so down

I am having lots of tests as I am newly diagnosed. I Am so scared and confused. Today I have called my lupus nurse and asked her if it was possible to see my eye specialist earlier as I am scared to lose my vision and she seemed a bit annoyed and told me that I need to learn how to relax. I felt like crying. I didn't mean to bother her but I am so scared and I was hoping she would understand. Am I crazy?

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Hi Tulipano. This sounds like a horrible experience to have had and would be so whatever stage you were at but seems particularly so when you are newly diagnosed. Of course you are going to feel scared and confused - that's normal and not crazy at all. What I have been struck by on my own journey is how hard you have to fight to be listened to and for your concerns to be heard without judgement. But you should know that you are within your rights to worry and to want to seek advice from professionals and you should not feel bad for doing this. I'm new to the forum but perhaps there is a helpline you can call to talk through your concerns and to help you feel listened to? I think I saw one in an earlier post...Anyway, hope you feel brighter soon xx

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Hi Tulipano,

You're not crazy at all. Being newly diagnosed with a chronic and unpredictable condition like lupus is frightening and stressful.

Have you spoken with your GP, consultant or lupus nurse about how you are feeling? Perhaps they can arrange a referral to counselling for you? It may be helpful to talk through some of your feelings and worries with someone.

We do have trained volunteer telephone contacts if you would like to chat to other people who are living with lupus? They are not medically trained, but they are good understanding people to chat with. If you would like details for a contact in your area, please just let me know.

If you would like information about more support services that are available, please have a look at our leaflet here - lupusuk.org.uk/lupus-and-de...

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Thank you ❤

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Hello again. I think I replied to one of your posts yesterday. We all understand your worries and concerns. We've all been there and waiting for appts, tests and then the results and hopefully someone who can interpret those results and explain them to you - it all takes so long and causes so much stress and worry for us. Doctors just don't get it. Can I ask what eye symptoms you have? I couldn't see any mention of it in your last post? Is it a Consultant Opthalmologist you need to see?

Wendy

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Just read about your optic nerve issue, as picked up on by your optician.

Did you see your Rheumy on 19th September? Did s/he say how long this referral would take?

Wendy

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Hi

Thank you for your reply. My opticians have found swelling around my optic nerve. I went to see them because of constant pain behind my eye and I can't see well from my right eye. I told my rheumatologist Dr and she referred me to an eye Dr. I have the appointment in October.

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OK. So you're waiting until October. If you've had the appointment letter, phone the doctors secretary and ask if you can be put on the cancellation list - i.e. if anyone cancels you are prepared to take that appt last minute. The secretary might be helpful. In the meantime, are you on any medication? Steroids?

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No no medication. I Am feeling so unwell

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That's a really good suggestion of Wendy's to call your opthalmologist's secretary and explain your situation and your concerns. Hopefully they may be able to slot you into a cancellation. There is something called optic neuropathy and optic neuritis that can rarely occur with lupus but it is treatable (if you like a bit of science there is a BMJ article about treating it here: bjo.bmj.com/content/81/2/130)

It is very worrying when the optician finds something but do remember that it may turn out to be something very minor indeed. This has happened to me - I've twice been referred on to opthalmology now - once when the optician picked up what she thought was some kind of growth on the retina and secondly when they thought the blood vessels were very inflamed. It actually turned out to be nothing significant on both occasions and the eye pain I was having was related to something else entirely. It's good that they do err on the side of caution though so you can get treated and sorted out if necessary.

It is horribly worrying to be diagnosed with a chronic health condition and you will find that many of us on here suffer with varying levels of anxiety. You might be able to find a mindfulness group or other psych help locally - where I live we have classes on subjects ranging from dealing with panic & anxiety, dealing with pain, mindfulness etc - they are all free and we can self-refer. You can also usually get to speak to a counsellor through your GP surgery.

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Right. And the lupus nurse wasn't helpful. That's not good. What about your GP? Maybe you should visit him/her and say that the eye doctors appt is October but you are concerned about waiting and feel very ill - can they help in the meantime?

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I will go on monday

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Great. Unfortunately although this illness gives us good days and bad, we still need energy to fight for ourselves. Dig deep. Find the strength you need. Pester the eye doctor's secretary and lay it on thick with your GP. Don't take no for an answer. Let us know how you get on. Now rest. X

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Thank you so much for replying. Means so much to me. Xx

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I too am newly DX'd w/Lupus(maybe Discoid?) plus now I am waiting for my Dermatomyasitis blood work results..the first blood test was lost, and now the second one has been over a week with no results..arrggg.I write in my patient portal just about every day...waiting for results is horible

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Hi Tul, I have had lupus for about 4-5 years now and i get tested yearly on my eyes as they are worried like you but i have been told i have better than 20/20 vision so they are not worried but that could be because i am so young (15) but it could also be because lupus might not affect the eyes as much as you are worried it does. But if you are worried just go through your gp or find an eye doctor and see them regularly. I hope you get the results you want and just PM me if need anymore advice or need someone to chat to.

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