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What is your lupus story? Let's share!

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Margarita_k

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Edited on 16/11/2016 at 19:35

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Margarita_k

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Last activity on 07/10/2020 at 11:39

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Hello,

In this discussion you can share your stories about how you were diagnosed.

When did it happen? What were your first reactions?

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wolfloup

16/11/2016 at 19:35

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wolfloup

Last activity on 11/01/2023 at 01:06

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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)...

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2016-11-16 19:35:54

Margarita_k

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19/10/2017 at 11:08

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Margarita_k

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Last activity on 07/10/2020 at 11:39

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Thank you for sharing with us @wolfloup‍ !

How about others?

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What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2017-10-19 11:08:22

robjmckinney

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26/10/2017 at 11:27

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robjmckinney

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Last activity on 19/11/2024 at 19:37

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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

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2017-10-26 11:27:01

Courtney_J

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30/06/2020 at 12:13

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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Hello everyone,

How are you doing? Have you seen this discussion? emoticon cute

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

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2020-06-30 12:13:41

Holly12

30/06/2020 at 12:50

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Holly12

Last activity on 15/09/2024 at 15:47

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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 😢

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2020-06-30 12:50:13

Courtney_J

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30/06/2020 at 16:58

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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@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

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2020-06-30 16:58:10

Holly12

21/09/2020 at 12:51

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Holly12

Last activity on 15/09/2024 at 15:47

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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

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2020-09-21 12:51:48

Courtney_J

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22/09/2020 at 10:08

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Courtney_J

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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

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2020-09-22 10:08:49

amanda397

03/10/2020 at 00:09

amanda397

Last activity on 28/07/2024 at 15:33

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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 🙂

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2020-10-03 00:09:58

TWWTS1

28/10/2022 at 01:19

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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.

What is your lupus story? Let's share! https://www.carenity.co.uk/forum/lupus/living-with-lupus/your-diagnosis-1386 2022-10-28 01:19:23

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21/11/2016 at 15:19

I had a hip replacement 16 months ago due to osteoarthritis. I can honestly say it was the best decision I have ever made. Yes I was not looking forward to everything post op, but I am now 100% mobile and after not being able to walk any distances I now enjoy walking again and I've managed to lose 2.5 stones. Totally pain free and I've had lots of comments about how much happier I look - my face was obviously showing my pain. If you have any questions please ask!

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21/11/2016 at 15:19

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