diagnosis for lupus: feeling really ill again i... - LUPUS UK

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diagnosis for lupus

curtis profile image
9 Replies

feeling really ill again i have had most if not all symptoms.....feel as though doctors dont listen, have been so ill past 2 weeks i cant even get out of bed..anyone know of anyway of getting diagnosed quicker, have taken list of symptoms to docs but feeling really ill and its making me depressed, after 12 trs of being ill enoughs enough, had a hysterectomy at 24 due to anemia and am now 32 and still unwell

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9 Replies
ebril profile image
ebril

I felt like you for years, unwell but doctors just thought it was in my head or it was the depression. I was finally sent to see a rheumy becuase of my knees and was finally diagnosed with SLE and everything seemed to fall into place when she went through a lot of my symptoms with me. Sadly my doctors no nothing about Lupus (as do a lot of doctors) so when I go to see them they just hold their hands in the air........which is no good for me, but I see my rheumy regularly and she is brilliant but be persistant

curtis profile image
curtis in reply toebril

thank you for your reply i will try x

Sue2803 profile image
Sue2803

I sympathise, I too had a hysterectomy at 24, because after I had my daughter, I had terrible bleeding and anaemia, but was not diagnosed with SLE and APS until I was in late 40's. Am now 51 and was diagnosed almost by mistake. Luckily for me, although all the meds I am now on, seem to help a little but not a lot.

All you can do is keep pushing to see Rheumy., they will diagnose you.

curtis profile image
curtis in reply toSue2803

Its going to be a struggle i can see, but hopefully get there in the end, thank you for your reply x

hello curtis

it took my doctors over a year before they took me seriously i went back and back and back until eventually a new doctor took bloods and hey presto a positive reading, however i understand how depressing it is to be at the docs so often but sadly its the only way.

since my diagnosis earlier this year, when i do go to docs they now always listen and act on my symptoms.

good luck.

curtis profile image
curtis in reply to

Thank you and i have started keeping a diary, so they have something aswell...thank you for all your replies means alot x

Rusty9 profile image
Rusty9

Lupus is called 'the great pretender' cos its like lots of other diseases. Have you had Ana, Ro, & rheumatoid blood tests? Asked to be referred to rheumatologist it took me many years to get diagnosed. Take photos of rashes, blisters, crops of bruises, swellings to add to diary

Hope you get good treatment soon but nhs struggling with workload x

tintin49 profile image
tintin49

i was taliking to a wonderfull lady from lupus uk and she said it takes on average 7 yeras to be diagonsed with lupus. for most people that could be fatal.

its made even worse when your gp disagrees with the rheumatologist even though i had a positive blood test and have several symptoms.

sometimes i think its a lonely world when you have lupus having to deal with ignorance

curtis profile image
curtis in reply totintin49

it is awful, people dont realise how ill it makes u, feel as though most the time ur banging ur head against a brick wall x

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