Does it ever end?

Hi, I'm new to the site and I'm so glad I found it!

I'm off to see GP again today to discuss blood results from dermatologist...

I've been having symptoms for over 10 years but just have never associated them with anautoimmune as they present themselves at different levels and different times.

I'm really down at the minute as I've had what is possibly a flare up (of what is to be confirmed) or I am going completely mad and imagining the pain in my joints, fatigue, hairless, mouth ulcers, rash...and so much more. Told by one locum GP to take paracetamol and go back if I wasn't better in a week - that was 3 weeks ago. Symptoms not any better but not any worse at least.

I'd already had an appointment to see a dermatologist as I'd been itching and scratching myself stupid over the past couple of months ( diagnosed as dermographism)

I was so ill when I had my appointment and my rash on my face so inflamed that the dermatologist suggested it could be malar rash and ordered lupus tests.

This is where I'm at today - finally going to see my actual GP, not seen him for over 3 years. I'm taking my wonderful partner with me as I cannot drive at the minute but also because he reminds me of what I need to ask and will help me fight my corner. I don't feel strong enough to fight but I know i need to. 10 years, I cannot go through another 10 years of poking, prodding and made to feel like a hypercondriac.

So I'm off to see if I have any answers today. I'm trying to stay positive but I have already had a bad week - work finished me so I feel like an utter failure but hey ho - it could be worse, I know that but my perspective is a bit off at the minute.

C

5 Replies

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  • What medical school teaches that paracetamol will relieve those sort of symptoms? I think he may be earning money by false pretences...

    Good luck.

  • I'm with Pro. Let us know how it goes - I'm really hoping you get a referral to rheumatology and sonething better than paracetamol.

  • Hi Charliebear68,

    Good luck with your appointment today. I hope that you get some answers. Let us know how you get on.

    If you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • Thank you all for your comments - it is so much appreciated.

    Appointment didn't go well - no referral, no pain relief offered and I've made to feel like it's all in my mind.

    Blood results all not back in but the Lupus negative therefore in his eyes is categorically not any form of Lupus. 10 years ago they pushed me down the CFS / depression route and I didn't agree with that at the time but you think your doctor knows best and you're so exhausted that you can't question their decision. All they offered me for CFS was CBT which made me worse.

    This episode is far worse than any other but he didn't want to listen - my joints are affected but he didn't even examine me - just looked at my history and surprise surprise...are you depressed?? His clinical decision is based on my past history and from asking pretty stupid questions about 'are you depressed'. No, I am pretty upset that he hasn't listened to me and offered any kind of next step apart from now go away and think about it for a few months and if you're still no better, come and see me.

    My partner is fuming, he cannot believe how my GP was so dismissive without all of the facts to hand. We were ushered out of the consulting room before I had finished asking my questions and the next patient was opening the door to come in. All in all, not a good day.

    Not sure what to do next - I know my body, I'm not depressed, I know it's not CFS or a virus or in my head. I welcome all thoughts and advice as I feel like I've been backed into a corner.

    I'm so exhausted from seeing him that I need a sleep!

    Thanking you all in advance.

    C

  • I completely understand and feel for you. I don't understand why it is so hard to get help for these diseases. I understand that they are not simple to diagnose like hypertension, but it makes no sense in todays world we should have to suffer. I don't know about things over there since I live in the states, but my friend was so sick with inflammation, fatigue, and many other symptoms and it ended up being Lyme disease from a tick bit 20yrs ago that was not diagnosed because the basic test doesn't always pick it up. She went to a special clinic out of state and they did a different test that cost more and it picked it up. Now she is detreating and has been in treatment for 2 yrs and probably won't make it. I don't know, it was just a suggestion.

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