Fed up

i suppose the best way to describe how I feel is lost. Like the rest of you I do not like what this is doing to my life and all the changes I have to make. I hate being so tired all the time.

I don't have a firm diagnosis of Lupus but have been told I have APS. I am a bit of a control freak and I just want an answer so I can get on with it not sit here wondering what is wrong so I can try to understand it. I want to know if I should go to a GP if this or that happens, as I normally wait to see if it will go away. Mind you having said that I have also lost faith in my GP over this last year, I don't feel he listens or even understands. When my speech became more muddled earlier this year his partner put me on 150mg Aspirin straight away as she suspected I had APS but he just said he was sure it wasn't and halved the dosage when I next saw him but I have now had a positive result for APS and been referred to haematology on my rheumatologists recommendation. He recently suggested coming off one of my meds (arcoxia) because of the reflux which is getting worse but I would hate to think how much worse this would make getting out of bed in the morning. He marks my blood results to be repeated in 2 months and I have them every 2 weeks! My egfr is now at 49 and when I asked if this is ok he said yes which is his stock answer I think. My fbc is just above 10 and yes that is ok as well, does he not realise how tired I am. I would not wish how i feel on anyone but maybe if he felt like this he would understand more.

I just want to cry!

Sorry rant over.

Sue x

6 Replies

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  • So sorry Sue, to hear your'e feeling so down and frustrated. Even with a diagnosis, atigue is the one thing that my consultant admited he could do nothing to improve and it remains a constant devil, determined to disrupt my life and make me misserable. I have read a few self help books over the years which I have found useful. I got mine from the library and even one on prescription from my GP. I really would like to get back into swimming as I found that quite a good fatigue buster. I can distract myself a bit sometimes with work, firiends or watching tv, but I do have to be careful not to push through it too much and forget to take a nap. Be kind to yourself and I hope you feel more alive soon.

    Val x

  • Thank you flutterby, fatigue is definately the most annoying symptom I think. I am going get some books to try and understand this more. I had the day off yesterday but going back today, so fingers crossed.

    Sue x

  • oh blimey you sound just like me and same situation, i wanted to cry all day yesterday so hope you cheered up today, xx

  • Hi Penryn

    Not quite so fed up but think I may have a cold lurking, fingers crossed it stays away.

    Hope you are feeling better as well.

    Sue x

  • Hi all

    Constant fatigue is misserable. Despite my many years of practice, it just isn't always possible to acurately predict when it is likely to happen, but I have found certain things very useful. I once kept a sleep/activity/symptom diary for a period of two weeks. It helped give me some insight into particular patterns to the fatigue/SLE and I am pleased to say it helped me to establish a routine that, generally works well for me. It' might be helpful to share such a diary with your rhuematologist. I hope you get a clearer picture of things soon.

    Val x

  • Hi Val

    I don't seem to be able to balance the amount of rest I need into my life however I try. I work full time and tend to use the weekends to rest as much as possible but the weekends have been busy as well recently and I think that is taking its toll. I took Wednesday off sick and felt much better for it but this weekend is going to be fairly busy as well and I feel my energy levels dropping already. I might give the diary a try to see if it helps me work out what saps my energy most.

    Thanks for the suggestion.

    Sue x

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