Feeling awful

Hi I have rheumatologist on Thursday already have fibromyalgia and arthritis now they are looking at lupus bloods were negative but I have rash on face hair falling out feeling awful like I have flu sores up nose in mouth and on lips coming off gabapentin because it doesn't help hoping I will get some answers on Thursday any suggestions as to what I can do to help myself as I can hardly keep my eyes open no energy so tired and no idea what to do

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  • Hi Bev-c,

    Good luck with your appointment on Thursday. If you need any tips on preparing for it, we have an article that you may find helpful here - lupusuk.org.uk/getting-the-... Let us know how you get on.

    For tips about what you can do to help self-manage certain aspects of your lupus, it is worth having a look at our blog articles which discuss things like fatigue, hair loss and brain fog - lupusuk.org.uk/category/blog/

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

  • Hi Bev-c

    I am sorry to hear you are feeling sooo awful.

    I have had this experience recently. I had all the symptoms of a flare but my bloods were ok. It was eventually confirmed I was in a flare and it seemed I have been in one for a long time. Unfortunately because it was not spotted for such a long time I have sustained damage to my lungs. Lupus blood test don't always show what is actually happening with the patient. Its very difficult to get my flare under control at the moment. Please be persistent and ask for second opinion if needs be before damage is done.

    I wish you all the best.

  • Thank you for your reply I'm sorry it took such a long time for you and you have damaged lungs saw rheumatologist today she was real nice said I have secondary fibromyalgia and had lots more bloods done she does think it could be lupus but wants the bloods done first then seeing me in 8 weeks to discuss further she wants me off all medication until bloods come back so not sure how I will cope I'm so sore and exhausted she don't me to try not to worry but that's easier said than done its so good to know there are others who understand what I'm going through thank you take care

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