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Hughes Syndrome APS Forum

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bevjane74 profile image
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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

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bevjane74
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MaryF profile image
MaryFAdministrator

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

bevjane74 profile image
bevjane74

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

GinaD profile image
GinaD

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.

Lure2 profile image
Lure2 in reply toGinaD

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

GinaD profile image
GinaD

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.

Lure2 profile image
Lure2 in reply toGinaD

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

Best wishes from Kerstin

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