Help any advice welcome

Hello I have been a diagnosed coeliac for over 20 years and have suffered numerous other symptoms during this time that has always been put down to it. Last Christmas things took a turn for the worse for me and I lost 3 stone in 2 months I am also suffering from joint pain, extreme fatigue, brain fog, depression, migraine, pins and needles plus others that I can't think of at the moment 😊 I have been under rheumatology for 6 months and have been diagnosed as probable undifferentiated connective tissue disease and am currently taking the malaria medication sorry can't remember name. I am not due to see rheumatology until February but have been suffering from repeated protein in urine which I am being given antibiotics for which seem to clear it for a couple of weeks then I have to go back, I am worried that something else is going on as I am feeling awful I am in constant pain, exhausted and today I am having pain when I take a deep breath and I have been feeling constantly sick although I have only been sick a couple of times in the last 3 days. I am fed up going to the doctors and they are fed up of seeing me but feel helpless and really scared and don't know what to do besides try and wait until I see rheumatology? Thanks for reading this x

4 Replies

  • Hi there.

    So sorry to hear how rubbish you are feeling.

    I'd say go back to your GP when they open tomorrow (assuming that's when they do). They're there to look after you, help you with your symptoms and put your mind at rest.

    When I was first diagnosed and not fully controlled I got lots of horrible, random symptoms and it was difficult to know what was going on with my body, what was important and what wasn't.

    What is important is that you communicate with your medical team in an open and honest way, and let them know what's going on. They can contact rheumatology for advice if need be too. At this early stage you may need extra care and your medication tweaked, so don't feel bad about going back

    When you do see your rheumatologist in February ask for advice about how to deal with this sort of situation if it arises again. My rheumatologist gave me her email address as she wasn't impressed with my GP. It's never a silly question.

    It's your body and you're right to want to look after it and want to feel betterxxxx

  • Thanks so much for advice really do appreciate your help and support xxoo I will definitely go back to the doctors tomorrow xxoo

  • Hi leannehowis,

    I notice that you said you were going to go back to the doctors after Lupylass' advice. How did you get on?

  • Sorry meant to follow up what happened when I went back to the doctors, I was told probably a virus and given some anti sickness medication. Still the same on and off, doctors have now said that I'm probably peri-menopausal, I'm 39 and family history of menopause is mid to late 50's, just given up now and going along with whatever the doctors say, had 3 hiv tests because the only thing that explains my symptoms is aids, then Chlamydia again all negative so now menopause 😞 got rheumatology next week so just waiting for that and hopefully some help x

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