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Patients Lupus
What is your lupus story? Let's share!
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- 11 comments
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wolfloup
Good advisor
Hi,
I was diagnosed in August this year. In April I had a strong fever, for which I took paracetamol and it passed. In May, the fever returned, so I went to see my GP and he advised me to do some blood and urine tests to detect the problem. At the same time I started having pain in ly back and shoulders, but I didn't pay much attention to it, cause I thought it was because I was spending too much time in front of my laptop.In JUly it got worse, my feet started swelling. I went to the hospital and they just put some lotion on my feet and sent me home. Then I had my face and my legs covered with pimples...
So I understood there was a problem and my GP sent me to a kidney specialist who confirmed I had lupus. I was then admitted at a hospital for 4 days to start the treatment (antibiotics, cortisone, etc)...
Margarita_k
Community managerGood advisor
Thank you for sharing with us @wolfloup !
How about others?
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Community Manager
robjmckinney
AmbassadorGood advisor
My wife suffered extreme fatigue and quite 'dopey', she was finally referred to Papworth for a 24 hour sleep study.
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robjmckinney
Courtney_J
Community managerGood advisor
Hello everyone,
How are you doing? Have you seen this discussion?
What is your lupus story? How were you diagnosed? How are you doing now? What medications or treatments have you tried? Feel free to introduce yourself and share your story, your advice or your support here!
@Cindy1 @Tjsharples @upnorthhere @lupus79 @iwillbeatthis @allie1983 @Fay#:o'Connor @Shellington79 @Kelly246 @Aineokeeffe @Jack.Mcm @Holly12 @Jazzib58 @Cazza55w @Jooliver @Lilread92 @LouiseElcross
Take care,
Courtney
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Courtney_J, Community Manager, Carenity UK
Holly12
Good advisor
I was diagnosed with lupus 23 years ago. In all that time I managed it quite well, but in the last year or so I started going downhill. One of my kidney's wasn't functioning as it should be and was admitted to the hospital for a week until they got it under control. I had trouble walking very far, and had to come off my work. Then in march this year I had a seizure my poor son found me unconscious in my bed. He had to phone the parametedic and was taken into intensive care as I was unconscious and my blood pressure was very high. Doctors said the inflammation went to my brain, it was a very scary time. Trouble is now I don't feel like the same person anymore. I have been left with numbness in both of my hands now, due to having the seizure. I am angry and frustrated I can't do what I used to be able to do and I feel so low at times. I just want to be me again 😢
Courtney_J
Community managerGood advisor
@Holly12 Hello Holly12, thank you for sharing your story! I'm sorry you've been through all of that. Please keep us updated on how you are doing if you're feeling up to it, and don't hesitate to ask any questions or share any thoughts you may be having here in the forums!
Take care,
Courtney
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Courtney_J, Community Manager, Carenity UK
Holly12
Good advisor
Hi I've had to give up my work due to this awful disease, can't walk very far now. I'm feeling really low about this as I have worked all my life. Is there anyone in the same position on here. Would love to hear from them x
Courtney_J
Community managerGood advisor
Hello all,
Feel free to share with @Holly12! How do you cope with your lupus? Do you ever feel down about it?
@KPangela @Tjsharples @Nomibee @lupus79 @iwillbeatthis @ClaireTF @upnorthhere @Tahirah87 @Ajs4548
Take care,
Courtney
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Courtney_J, Community Manager, Carenity UK
amanda397
Hello. I'm new here, after almost 2 years I finally saw Rheumatologist today. My ANA test is negative, but the doctor says I have all signs of Lupus. Raised CRP and ESR levels, hair loss, skin rashes, joint pain, fatigue etc. Have had cortsteroid injection today with a review in a few months to start hydroxychloroquine if needed. Has anyone had similar experience? Thank you 🙂
TWWTS1
Hi
I was diagnoses with lupus about 10 years ago. I was fatigued, but I thought it was normal to be so tired from working so much. And joint pain (but I was chalking that up to getting old). But the big give away was the lupus facial rash. And not only lupus, but now TTP. It's like my body hates me. Everyone talks about getting older, but I didn't think it would be this down hill.
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Margarita_k
Community managerGood advisor
Hello,
In this discussion you can share your stories about how you were diagnosed.
When did it happen? What were your first reactions?