Log in
22,640 members18,028 posts


Still no diagnosis feel like the world is ill aware of the pain l am coping with. Well coping feels like lm on a knifes edge at the moment.who knew that being so exhausted could be so depressing.. My fingers are swollen and don't move very well. I struggle to get out of bed due to the pain in my swollen ankles, knees, elbows and fingers. Excruciating pain in my lower back and can only be described as walking on glass. The thought of leaving the house for Xmas shopping fills me with dread and l have been known since this illness started to have a number of panic attacks. Not sure how much more of this l can take its as if lm so Alone and no one understands.

6 Replies

I'm so sorry you feel so rubbish. Just wanted to say that I do completely understand, as I have been in a flare for 3/4 weeks with the same thing, and was equally exhausted and in pain. The back pain in particular is something people can't understand until they experience it. Because it doesn't just affect your back - every little movement is agony. This may not help you but I saw my rheumy last week and got an emergency steroid shot. Has helped massively. Back still sore but I've gone from hardly able to move (Monday) to going back to work on Wednesday. Are steroids an option for you? Hope you can get some relief soon, and please know I sympathise and understand exactly what you're going through x

1 like

Take care. Have you considered a chat with on of the Lupus UK contacts?


Hi Anne51,

Have you discussed your anxiety and low mood with your GP to see what additional support they may be able to offer with treatment/counselling/therapy? For more information about support services that are available, we have a leaflet about depression here - lupusuk.org.uk/lupus-and-de...

As Kevin53 has suggested, it may be helpful for you to speak with somebody who understands lupus? I would be happy to provide you with some telephone numbers for our volunteer contacts or let you know more about your nearest support group if you'd like? What area do you live in?


Thank you as l haven't been diagnosed by anyone apart from their being excoriating pain swollen joints and no sleep despite large amounts of prescription medication l apparently don't quality for counselling . I love in Birmingham west mids


In some areas it is possible to self-refer for therapy or counselling, so this may be worth investigating - nhs.uk/Conditions/stress-an...

Have you discussed your anxiety and depression with your GP? If they are unwilling to offer you additional support, it may be worth changing to a different doctor. You can find more information about this at citizensadvice.org.uk/healt...

I'd recommend that you get in touch with our West Midlands Lupus Support Group. Yvonne Norton is the chairperson of the group and also a Trustee of LUPUS UK. You can find her contact information here - westmidlandslupus.co.uk/con...


Thank you


You may also like...