Hughs Syndrome Joint/neck pain?

Hi I was diagnosed with APS 15 years ago after multiple miscarriages. I went on to have three healthy children with lots of support, heparin (280 injections per pregnancy!) and asprin though my twins were very premature at 29 weeks. They were my 9th pregnancy. They are now 9 and 7 and I am 44.I have a lot of back pain neck pain that almost feels like fibromyalga like and swollen ancles that hurt a lot in the morning.Pain in my knees to the point if I go for a walk sometimes I cant bend them. They crunch audibly loud and an xray found arthritis in one.I take no treatment for Aps as I was only advised in pregnancy!. Wondered if all these symptoms could be down to the APS?.Grateful of any replies.Thanks

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  • Hi and welcome, you will learn a lot on here:  Firstly please let us know where you are located, are you in the UK?  Secondly lots of information on the charity website: hughes-syndrome.org/  You may need your GP to refer you to a recommended specialist: hughes-syndrome.org/self-he...  If you are not in the UK I/we will still endeavour to help.  If you are off to the GP beyond extra help for your Hughes Syndrome/APS please make sure your vitamin D, B12 and Iron is tested this is very important.  The trio of disease often described by Professor Graham Hughes is Hughes Syndrome, Sjogrens Disease and a Thyroid problem, which often gets wrongly labelled as Fibro as the TSH test is not that reliable.   It is a good place to start the TSH, but if you remain suspicious after you have checked the other levels, there are tests you can do privately which produce a more accurate picture.   MaryF

  • Thanks ok I will write this down I think. I asked for bloods recently which they did but they were run of the mill tests FBc ect I don't know the result yet. Thyroid was on there but not antibodies or inflammation.

  • Apart from the advice that Mary has given with the tests which I agree you should have, you should ask for general autoimmunity screen and Rheumatoid screen. Its generally accepted that once you get one autoimmune condition others tend to want to join in. :-) 

    Also unfortunately be aware that not all of us get positive results despite having the conditions. So you need to become your own advocate and do your own research. Without becoming overly neurotic about things, if you think that your symptoms are fitting a certain criteria but tests are still stubbornly negative, don't just give up, keep going back to your Doctor and ask for help.

  • I ditto the comments above.  But also, osteoarthritis does not always result directly from APS. 

     have had severe arthritis in my left hip (which was replaced in 2013.  Fine now.  Yeah!) and in my right knee (surgeon doesn't want to muck with it until I'm on crutches -- which is  not yet.)  My hip osteoarthritis probably had an APS component, but its origin was  probably not due to APS but due to a compensatory gait I evolved to hide the fact that my right knee was broken in a skating accident at age 8.  (Long story.)  But my hint to you:  a consult with a physical therapist can certainly help you feel and move better.  There comes a point beyond which physical therapy no longer works, but it can certainly help at early or mid stages of osteoarthritis.  When a joint hurts our natural response is to lay off it.  But if we continue to move (properly!  this is where the physical therapist comes in!)  we can stabilize or even reverse the ill effects of those nasty calcium deposits.

    Gina

  • forgot to add this:  -- and if you knees make loud crunching sounds and the calcium detritus is confirmed by scans, then, no matter what the cause, you knee now has osteoarthritis

  • The feet can mean RA / Rheumatoud arthritis! I have it had JRA as kid! Get it checked! Don't want to scare you, but I had swollen ankles b4 loosing my leg& nothing worked if they had looked into WHY I'd have had DX and my leg! But don't go by me I lost my leg due to malpractice around Xmas holidays!!!

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