Sticky Blood-Hughes Syndrome Support
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Good news 1st last

Well yesterday I went to see the pain management nurse who is a connective tissue specialist, I asked for an appointment as I was totally confused with my ilnesses and diagnosis if all doctors explained it the way she did I think there would be a lot less confused people - basically she pointed out that I have the factors for lupus and rheumatoid arthritis in my blood which will give me the symptoms but as the anti bodies aren't yet present that the illness itself isn't full blown told me which anti bodies they would be looking for and if they present themselves then it would mean the illness has gone full blown the only illness doing that so far is Sjorgrens and aps she pointed out which anti bodies are causing the fatigue which are causing the pain how to best deal with it and how best to take my meds, I came away feeling a lot less confused more understanding and really well informed, I now feel as though I've got the right support team and was told yesterday if I've got any confusion just to give her a ring and she'll try her best to explain things to me best she can

A rather happy little person today at last

10 Replies

Hi bevjane

That sounds like a good result then.

Where did you see the nurse?



Hi Dave

She's a connective tissue specialist linked to my specialist consultant who I found on the Hughes syndrome forum she helps with management of the conditions and pain management just seen her at my the hospital I see my consultant at - Freeman hospital newcastle upon Tyne


Thanks bevjane


I feel at the minute that my body is broken. I have aps and Dr said the same to me I need to take asprin and hydroxy some thing. I see some one in Morpeth but thinking of moving. What consultant did you see. Glad you are getting help. X


Good morning Paulie,

I see Dr Griffiths at the Newcastle Freeman hospital, she is really good very thorough I did run into some confusion with the illnesses but it was mentioned I should see her pain management nurse and she explained everything to me and how the illness effects your body and how to manage the illnesses better I have aps and Sjorgrens with lupus and rheumatoid arthritis factors Dr Griffiths is an aps specialist but knows all about the other illnesses connected to it.

Hope you get some relief soon



Thank you for the update, keep well and smiling. MaryF

1 like

isn't it nice when it all comes together, not difficult really, just a shame that all Hospitals cant do the same!


Would make life a lot easier yes, it was much more settling to know what's going on inside my body rather than just say you've got this illness and borderline this illness now I know what they mean and what they are looking for its such a relief


Hi, I also go to the freeman hospital. Which consultant do you see? Mine is prof Ng. Never see a specialist nurse though. What was her name? Feel like I could do with seeing her too! Xx


Hi BexeT

I see Dr Griffiths she's really nice and if you give the secretary a ring she can either set an appointment up with the pain management nurse or give you her number to ring through and make an appointment - I'll sort through my letters later today and see if I can find her name for you though - I seen that Prof Ng once and left the appointment not having a clue what was going on which prompted me to contact the pain management nurse


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