Dignosed with fibro as well today.... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Dignosed with fibro as well today....

smellyfootsies profile image
7 Replies

Hi i was told today i am now borderline hughes but have fibro... I have bee injected with plaquinal and have other tablets hydro.... Something. Will update if this helps with fatigue/ pain.. Has anyone else got this... Also does anyone know if i can get dla as i am too poorly to work as i am on incap benefit for a heart condition...

Xxxx

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smellyfootsies
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smellyfootsies profile image
smellyfootsies

Hi

Yes i have tablets as well.. I will try and claim dla as i am now having to get a cleaner in as somedays i can not get the strength to do it as i get a lot of lower back pain and find it hard to bend and lift

. All my energy is used on getting the kids sorted out...

Thankuou for answering..

Sue x

momtomany profile image
momtomany

The tablets could have been hydrochloroquine (sp?) which is generic plaquenil. I was given it for the Hughes (it is a mild anticoagulant similar to aspirin) and arthritis. It took months for me to notice any difference, and while it hasn't been a miracle drug, it certainly helps!

tchance11 profile image
tchance11

I was first diagnosed with Fibromyalgia, in 2006. The thing that's always bothered me was that the meds to help it made me have worse symptoms(Lyrica) and pain meds (hydrocodone) I became addicted to! APsnotfab, is so right, I have no doubt it was the APS .

SueLovett profile image
SueLovett

I have just been diagnosed with Fibro, I already have Hughes, Sjogrens, Raynauds etc.

I am on DLA (at the moment, I live in fear of it being taken off me). I have a lot of cognitive involvement as well as the pain etc.

One of my real problems is I am allergic to so many medications including Plaquenil which is a shame as I think it would really help me.

I hope yo can get the help you need.

x

smellyfootsies profile image
smellyfootsies in reply toSueLovett

Thankyou...hope u are ok x

MaryF profile image
MaryFAdministrator

Hi there, I would make sure they test yo properly for sjogrens and also look at your thyroid, as often these two things can be masquerading as the often used term of 'fibro'. Mary F x

kathyD64 profile image
kathyD64

The problem with a diagnosis of fibromyalgia is that some doctors believe it to be a auto immune condition and suggest it is connected to APS but sadly the majority use the term loosely to dx people with pain with no medical cause and fatigue and thus often conclude mental health issues.

I was dx with fibro when in fact my APS was in a flare plus perimenopausal - i have dry eyes - bone dry on testing, ANA antibodies allergy to septrin but not ENA so was told i didnt have sjogrens- likewise thyroid function borderline at 5.8 i have read recently dry eyes are associated with fibro so i am confused i too have raised inflammatory markers... i tend to say about the APS and not mention fibro equally my last letter didnt have fibro in it so perhaps without telling me after my visit to london rather than admit they got it wrong they just dont add it to letters... i believe there is a financial incentive to give a diagnosis of fibro ! sceptical i know but there is to dx depression by GP's kathy xx

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