Sticky Blood-Hughes Syndrome Support

After seeing my rheumatologist and having lots of blood tests done I got the results yesterday, and turns out I have lupus and at the next appointment I'm going to be started on some treatment I've read up on lupus and fibromyalgia as another possibility it's very.confusing as all the symptoms are very much the same as each other, I was diagnosed with aps and as they're both auto immune illnesses and the symptoms are so much alike I was just wondering if there's anything else I need to know about lupus

Thanks in advance

7 Replies

Hi if you have APS and Lupus, please be aware that often the Fibro diagnosis is Thyroid problems... the tests are very narrow and notoriously unreliable, also Sjogrens may be something to look at also, Let us know how you get on. MaryF


I.thought the aps diagnosis would be it and I'd start feeling better it seems at the moment it's never ending hospital and doctor visits and test upon test in a way I'm not.complaining it's good find out what's actually going on but it's very draining


Im sure it is but better to get to the bottom of it once and for all so they can get you on the right treatment plan. I agree with Mary, don't get fobbed off with a Fibro dx. Its more than likely a Thyroid issue running alongside the APS and Lupus. Also ask about Celiac and if its worth being tested for that or do your own little trial by cutting out Gluten for a couple of weeks and see if that improves symptoms. prof Hughes recommends those of us who are not actually Celiac to stop eating Gluten and it does make a difference.


I learned a lot from "The Lupus Book, a Guide for Patients and Families" by Wallace as well as "The Lupus Handbook for Women" by Dibner.

There is some controversy as to whether I had lupus in my early 20s. Somewhere i read --one of these books? -- that estrogen often creates lupus flairs and that before menarche and after menopause, female patients often see a cessation of symptoms and blood markers. I hope that includes me!

One but of bizarre trivia I ran across-- lupus patients often have symptom flairs after eating alfalfa sprouts. I shared this tid bit with my sister and we were both astounded as for both of us, we were sickest when we lived near supermarkets that carried live alfalfa sprouts which we dutifully purchased and added to salads as we were trying to eat as healthy as possible, to make our fatigue, enlarged lymph nodes, constant low grade fevers and bizarre rashes go away!

Who'd thought? Alfalfa sprouts. Consider putting them on a 'not to eat' list.


Hi Gina, The only thing I have learnt to avoid when you have APS is to avoid Alfalfa. I hardly know what it is (i guess I know what it is) and how "dangerous" it could be but I do not take them on my plate.

Best wishes to you Gina from Kerstin


Again, I read this bit of trivia, then phoned my sister right away and shared with her. It was this huge epiphany moment for us as we both noted a direct corrolation between putting alfalfa sprouts on salads and an uptick in symptoms.


Hi Gina, Then it must be true then what I have been told. Thank you.

Best wishes from Kerstin


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