Sticky Blood-Hughes Syndrome Support
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Pain in lower back

Has anyone with hughes suffered from back pain? This seems to be a fairly new symptom to me (by new I mean the last year or two). I get crippling pains in my lower back, usually it is on my right hand side and comes on quite gradually. If I'm lucky and I noticed it starting then a simple shift in position will sometimes stop it going any further however if I don't realise in time then the pain builds to the point where I'm on my hands and knee's and barely able to take a breath. This pain usually lasts no more than five or ten minutes and can dissapear as quickly as it comes, sometimes I can sit in just the right position and it virtually just switches off.

I've had similar pains in my shoulders but they dont hurt as much but they mostly seem to be on my RH side. My specialist has refered me to a rheumatologist but I'm not sure how much help they'll be able to give me.

5 Replies

Hi Tomcat,

The Specialist you talk of is that the APS-Specialist APsnotFab and Mary suggested you to look for at London Bridge or St Thomas several months ago?

If you have a Specialist why does he wants you to be refered to a Rheumatologist?

The most important thing is that you are dealing with a Doctor who has knowledement of APS!

You have had APS for several years and you are still on Aspirin if I have understood the situation right. When I also read about your earlier symptoms I think you need to be well and propperly anticoagulated.

Best wishes from Kerstin in Stockholm


No, according to my good wife I did see Dr Hughes a long time ago when I was first diagnosed but I was told there wasn't much more could be done for me than my current specialist was doing, hence there wasn't really any point in continuing to see them.

This is the first time I've seen my specialist in about 5 years and I've only gone back because my symptoms seem to have changed. The Doctor I saw suggested that there's not really any changes needed to my medication however I am going for an MRI scan in a week or so due to a sudden onset of memory problems last Christmas(I had an arguement with my wife over something that happened the day before, I apparently wouldnt believe her and insisted that it was a week earlier). Since then my memory has gotten really quite bad and I have to fight to remember things these days.


I had back pain associated with a worn out hip which went away after I had my hip replaced. This sciatic pain may or may not have been worse then the siatica usually associated with hip osteoarthritis. I'll never know for sure, but given my high tolerance for pain, I believe that it was. My theory is that with my jumpy immune system inflammation of the whatever can become INFLAMMATION of the whatever with all the pain and exaggerated symptoms tht entails.


Hi I have had RH back pain that was blamed on a back injury and before that kidney problems. I still have this pain, even though kidney stones in LH side. Think to do with APS maybe?

This site is brilliant, I am sure you will get answers from others. Good luck

1 like

Hello Salstar.

What did you GP say when you asked him about that URGENT refferal to Guys Lupus Clinic?

APsnotFab suggested this some Days ago. She knows this illness very well and how to get treated for APS the right way.



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