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Sticky Blood-Hughes Syndrome Support
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Does anyone else get severe pain in hands with no swelling?

I also get pain in other joints especially hips knees and shoulders. Doctors have put hip and knee pains down to excessive weight but have offered no explanation for other joint pains.

I am currently waiting for treatment for sleep apnoea, I finally got an appointment date for mid october and my GP wont refer me to immunologist until apnoea is treated as he says it will be a better case if we can prove that symptoms of sleep apnoea have been removed then everything left is probably the APS.

Some days the pain in my joints is so bad it makes me want to cry and codeine is the only painkiller I can take apart from paracetamol. I forgot to take my aspirin last night and my hands are so bad today that even typing is painful.

11 Replies


I am so sorry to hear about the pain you have!

Do you have an APS-doctor that understands what APS is? Perhaps Aspirin is not enough for you as an anticoagulation drug.

Best wishes from Kerstin in Stockholm


Hi Phoenix, so sorry to hear about your pain - my daughter suffers from similar joint pain, which she describes as sometimes like skewer and sometimes like her joints are literally on fire. It is terrible and doctors have offered little explanation or pain relief. Luckily we are due to see Prof Hughes in 8 days (and counting!) I did not realise that this sort of joint pain was associated with APS - would be interested to know more if anyone can point me in the right direction. Once we have seen the Prof I will come back to you Phoenix77 and let you know what he said about this pain. Best wishes in the meantime,



Good for you! Good luck!

Best wishes to you from Kerstin in Stockholm


I have little swelling but my hand pain is due to arthritis.


If you're under a haemotologist ask them to refer you to a rheumatologist because of the joint pain this is what happened with me and they discovered once a blood test was performed that I had lupus, rheumatoid arthritis and sjorgrens along with APS

Hope this helps and you get sorted out soon


Hi flooss

If you are so kind, please tell us after speaking porfedor huges about pains..here in spanish foundation all patients with APS. we got some pains joints some days and it does nt look depends the Inr is low because there are some people even me i am having heparine high dose amd we keep tjat joint paints.what is true is that moderate execersice like swimming and walking improves that pains.

Waiting your answer best wishes with dr huges.


Hi all, I am sitting on the train on the way home from our appointment with the wonderful Prof Hughes - Oh that all medics were like him!!! My daughter now has a firm diagnosis if APS and Sjorens (sorry if I spelled that wrong), and I'm sure all of you who have been fobbed off or told "it's all in your head" will appreciate why my response was to burst into tears of relief!!! And as for joint pain - we described her pains, burning, sometimes piercing sharp pains through the joint, often dreadful crippling aching especially during her periods - and apparently this is a classic symptom of Sjorens, which very often goes with APS. Hope this helps and that you get some answers and relief soon.


So glad you got answers and from the expert. Wish you both well


Oh my goodness. Reading your symptoms is like looking in a mirror. I am so sorry you are suffering this way. What I have found helps a lot is Vit B12 injections. Recommendation is 12 weekly, but I notice the difference. The stiffness, pain and lack lustre is very noticeable. My gp allows me to have it every 8-10 weeks instead of 12. I have suffered for 50years with this joint pain, hands, feet, knees, back, everywhere. My heart attack has open ned so many doors for improving my health. Medics fail to read my medical notes , where they would find proof that my symptoms are not a result of my weight, but my weight is a result of my non medicated state in pain.


Yes I get very sharp pains in my fingers mostly. 2 days ago I actually screamed out and dropped what I was holding.


Sharp stabbing pain in feet and ankles.


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