Confused and fed up

This takes a lot for my to post here as I'm not much of a talker about problems, I'll try keep this brief.

I'm 23 and nearly 3 years ago presented with a rash head to foot I was sent straight to rapid access and seen by a derm. I had 3/4 kinds of rashes on my skin blood rashes down trunks of my legs a hexagon shaped rash on my arms etc. They suspected a vasculitis? at first then took a biopsy of my arm which was diagnosed as cutaneous lupus was put straight on Hugh dose pred slowly reduced to nothing but elecon cream when rash flares. Few months of visiting derm I was feeling systemically unwell I would describe of joint pain chronic tiredness nausea weakness she told me I would have to go back to my gp and tell him this as my blood tests were negative. Countless times I've seen my gp I developed ulcers peripheral neuropathy migraines raynaulds blurred vision and now very poor memory. I've been referred to neurologist for my nerve pain... but now I don't know what to do anymore. I'm down and depressed about feeling like this every day I struggle with work and home life. Sorry it's so long to explain what can I do?

Thanks Charley

8 Replies

  • Hi Charley,

    Welcome to the LUPUS UK community here on HealthUnlocked.

    I'm sorry to see that you're so down at the moment. Do you have a good relationship with your GP? I would recommend making an appointment with them and letting them know how you feel at the moment. They may be able to provide some additional support for you. If you have a close friend or family member that you can confide in then I would recommend it.

    If you think it would help i can send you one of our free information packs. Inside are a few pieces of information regarding lupus and the symptoms along with a list of contacts who live with lupus themselves and who are available to talk to for support and advice.

    Just let me now your full name and address by sending me either a private message, or an email, and i will pop one in the post for you.

    Best wishes,



  • Hi would i be able to get one of dem info packs off u please? I'm stil very confused about whole thing.

  • Hi Dawn,

    I have posted the information pack out to you today, so you should hopefully receive it within the next few days.

    Best wishes,



  • Hi Charley

    Sorry to read what a tough time your having. With your symptoms and history you also need a referral to a Rheumatologist!. Worth talking to your GP about it as well. Good luck. X

  • Hi Charley

    So sorry to hear what your going through. It does get you down and many of us can relate to those feelings.

    As the others have said its time to have a chat with the GP about how your feeling and see what sort of supports there is or just to have some time off work and the added pressures.

    I've not had to go through your symptoms but the fatigue and weakness with low mood gets to you in the end and adds to the cognitive problems or memory loss etc. these things rest will help with. I take antidepressants as well as the other meds because I can easily get low and it's a horrible place to be.

    See your GP chuck xxxx

  • Thank you for your responses, I will attempt to speak with my gp again. It's not so much that I'm depressed about life just with the frustration of not getting answers :(.

  • Hi Charley, I'm quite new to HU, diagnosed July 2015, symptoms for many years. I have found this site invaluable. The care, compassion, support , advice and hugs we share with each other is truly amazing, as this is such a cruel illness. I bet you have heard many times from friends, family, colleagues "but you don't look ill". We know we are and hopefully so does our GP who can start the ball rolling for all the tests and scans etc.

    Please do consider taking some sick leave as you will need it to come to terms with the condition, how you feel, how to cope, plus any new meds and hospital appts you will be attending. You definitely need some time out "just for you", even if it just chat on here. Good luck with everything.

    Take care

    Babs x

  • Yes I hear that all the time and then I feel guilty and question myself if it's in my head but I know it's not I'm drained of all the bubblyness I used to have. And taking time out of work is pretty much out of the question getting behind on bills will male my stress level worse and then feel even more ill it's a never ending circle. Hopefully I can find a good gp who will start getting things done thank you for the support its made me feel better joining this site and having people to talk to about it that understand


You may also like...