new to all this

I was diagnosed with Hughes Syndrome eleven years ago after extensive tests following a mild stroke - also have some lupus symptoms and sjogrens.

I was really unwell after a holiday in Scotland last September and then started having pain in my back, legs and hips. Thought it was the family polymyalgia but ESR was normal so my GP sent me to see a local rheumatologist who diagnosed fibromyalgia.

It was a real blow as I thought I already had enough to deal with but I realise that I have to accept it. I take amitriptyline and ibuprofen which seem to help and on warfarin for the Hughes.

I am doing as advised by the consultant and my physio and doing a small amount of aerobic exercise each day and some muscle strengthening exercises and trying to pace myself. But never know how I am going to be from day to day - felt much better over the last couple of days, but today have dreadful backache. The brain fog is horrible too as I was already suffering this when my inr is too low.

Caroline

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  • Hi Christine for the Sjogrens you can get eye drops and ointment and for mouth a moistening gel. I always keep a bottle of water to hand to wet my whistle as they say. It's important to pace yourself and take the days as they come. Xx

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