Sticky Blood-Hughes Syndrome Support
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Joint pain very bad - time to battle my GP again

Hi all,

It's been a long time since I posted on here. Last time it was to talk about my frustration about having to wait for an immunology referral until my recently diagnosed sleep apnoea was being treated. I've now been using a c-pap machine for almost a year but, although I no longer fall asleep at my desk, I am still constantly fatigued. The worst problem at the moment is the pains in my joints. Fingers and wrists are the worst, but knees, ankles, neck, hips and everything else regularly make their presence felt. Some days I feel I could identify every joint and muscle in the human body because they all hurt.

I am going to my GP in just over a week. There is one at my practice in Bracknell who, I found out last year, worked with Prof Hughes for a while. The rest of the practice know nothing about APS so I've waited until I can see the right one.

My problem is that I'm still worried I will get fobbed off and told a referral can't be done until I've lost some of the huge amount of extra weight I'm carrying. I'm scared all the time of this getting worse, of the doubting looks I get from other people (some of whom also blame my weight). Just because they can't see anything wrong they think I'm exaggerating.

Any advice on how to handle the GP and/or my doubting colleagues and loved ones?

4 Replies

Hi Phoenix,

I have read that you have been diagnosed APS for 10 years and you are on Aspirin for your APS.

You must insist on having a referral to an APS-Specialist. Can he deny you that with your positive antibodies??

Mary will be back this week also.

Read also "Sticky Blood Explained" by Kay Thackray. She has APS and writes about all the different symptoms there is. Good for relatives also so they understand better.

It is so sad that we have to fight for our health with this illness. Hope you see the right Doctor now at the practice in Bracknell. The one who worked with Prof Hughes!

If you do not see that doctor this time insist on a referral!

Keep my fingers crossed!

Best wishes from Kerstin in Stockholm


I read you post followed by a sympathetic sigh.


Which came first? The chicken or the egg? Pain, fatigue, a screwed up metabolism, and yes, weight issues can be the RESULT of autoimmunity, not vice versa!

If you can do so politely, remind judgmental providers of this relationship, ( as well as yourself!) and stress to your providers the need to first treat the root cause.

Good luck,



Hi, excuse me if I have already said this to you, but please do get then to look at your Thyroid in detail, as it is common to have this with Hughes Syndrome/APS as it is to have Sjogrens, please do not let them send you away with a fob off diagnosis. Also get them to look at your vitamin D, your Ferritin - (iron) and B12. It is very important to keep an eye on all this. MaryF


Thank you for your kind words and advice. I'm writing it all down to take to my GP. He's usually pretty good so we'll see.

Terrible day today. It's been around 35 degrees at work and I had a nasty brain fog, headache combo lasting most of the day. Not great when you're dealing with 900+ teenagers. I kept losing words mid-sentence and walking into things.


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