I have aps but think i have lupus - Hughes Syndrome A...

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I have aps but think i have lupus

kezebabe profile image
11 Replies

Hya basicly i was diagnosed with aps three yr ago but recently i keep gettin spot like bruses out of no where n sme times get big bruises n ive not even hury myself i have serious fatigue problems i mean my kids cud b running round n throwin thngs makin extremely loud noise but if im asleep i dnt flinch hence my partner does soo much i cud sleep twelve hrs n still be exhausted i have head aches all time n light makes this worse i odten get like a vertigo feeling where im always dizzy ive never been tested for lupus and never really had much medical help could any one give me some advice and possibly if u have lupus and can relate to any of this plz say thank u for ure time x

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MaryF profile image
MaryFAdministrator

Hi there, well any of it could be Hughes, and I am pleased that at least you have had a sensible diagnosis, and if you are taking anything to thin your blood you probably will bruise more easily. It is easy enough to have a Lupus test, and it would be quite a sensible idea to ask for a test - presumably you have a rheumatlolgist/haematologist? Just ask them! Lots of us on here have overlapping conditions. Do let us know how you get on and what they say xx MaryF

Suzypawz profile image
Suzypawz

Hi hun,they are all Hughes related but with the 'usual crossover' of disorders it could be any of the other disorders we mention too.

You can ask for a test for Lupus if you are concerned, also ask about Menieres as that could be what the dizzyness & virtigo causing them maybe?

Here is a link: dizziness-and-balance.com/d...

Fatigue & not feeling like I ever have enough sleep happens with me a lot, also elbows being extremly painful & sensitive ( like if the bedding or sleeves touch my skin......but I can press them & they dont hurt!?!) So I too are going on Friday to Thomies to ask for more tests whilst I'm at my appointment for all the other disorders whilst I am there....as my doc' says he doesn't know enough about Hughes & the other disorders to do anything this end.....which is ok as long as Thomies tests me instead.

Let us know how you get on......always ask for tests to be done if anything concerns you & you feel it may be something else as well as Hughes. xx

hpwellsy profile image
hpwellsy

I am like this but do not have lupus, instead I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. Again they are illnesses which affect the immune system. Definitely get a test to put your mind at rest, and also see the rheumatologist :0)

Rhian21 profile image
Rhian21

I have APS but don't have Lupus..You sound like a carbon copy of me..I was so relieved to discover that I didn't have lupus..I can sleep for two days easy..and still want more ! Be sure to have a test soon..take care :)

Mommaleda profile image
Mommaleda in reply to Rhian21

Why do we sleep like this??

Suzypawz profile image
Suzypawz

I'm at the Lupus unit at 10:30 & at the memory clinic at 2:00...............whens yours? xx

kezebabe profile image
kezebabe

Hi all had my bloods done today said gna do regular bloods n im askin for them other test x

Mommaleda profile image
Mommaleda

I'm right there with you. I was diagnosed in 05 and I am having huge troubles with dizzy/drunk feelings. I've had massive sleep problems forever but I never related it to APS until now. I never wanted to look at APS again after my strokes in 05. I'm glad I'm looking into it now. My symptoms and behavior makes a lot of sense to me and to my husband now. I'm currently going back to my gp to get help and I'm looking into disability. Life isn't over but it doesn't have to be this hard either. All the best to you

Mommaleda profile image
Mommaleda

Does stress bring it on for you too?

Herb profile image
Herb

Have a look at this page from Lupus UK about Lupus diagnosis

lupusuk.org.uk/what-is-lupu...

There isn't a Test for Lupus its based on having a cluster of symptoms plus some positive blood tests

I suggest you discuss it with the doctor who diagnosd the APLS. They will have some idea of what your concerns ate about.

kezebabe profile image
kezebabe

Wow just looked at this thnk im gna c my gp thx hun n gl wid ure health x

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