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How long have you had lupus?

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Margarita_k

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07/06/2018 at 12:13

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Margarita_k

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

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Hi everyone,

in this discussion I invite you to share your experience with lupus over time.

How long ago were you diagnosed? What has changed since? Did you learn to live with your condition?

Don't forget that we are here to share and to support, as well as to give advice. emoticon wink

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JosephineO

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06/09/2018 at 18:19

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 17 in the Lupus Forum

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Here is a testimonial we did recently with Anne who has had lupus the last ten years:

Testimonial

She also added two new recipes to our recipe section that are perfect for a restricted diet:

Recipes

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Josephine, Community Manager

How long have you had lupus? https://www.carenity.co.uk/forum/lupus/living-with-lupus/how-long-have-you-had-lupus-2388 2018-09-06 18:19:18

robjmckinney

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27/09/2018 at 18:44

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robjmckinney

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

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@FavourofGod My wife has Lupus and found gout tablets help with the pain and relief also to her restless leg. Although she does have regular week breaks from the drug but found them useful!

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robjmckinney

How long have you had lupus? https://www.carenity.co.uk/forum/lupus/living-with-lupus/how-long-have-you-had-lupus-2388 2018-09-27 18:44:03

JosephineO

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28/09/2018 at 16:55

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JosephineO

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Last activity on 15/07/2024 at 09:21

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@robjmckinney Thanks for sharing your advice, I am glad your wife has found some relief from her pain and restless leg.

@brillnor‍ and @FavourofGod‍, I hope you also have success with it.

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Josephine, Community Manager

How long have you had lupus? https://www.carenity.co.uk/forum/lupus/living-with-lupus/how-long-have-you-had-lupus-2388 2018-09-28 16:55:31

KPangela

19/07/2019 at 18:16

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KPangela

Last activity on 20/11/2024 at 14:32

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I've been living with lupus for since I was 9 years old. Some 37 years! I deal with it. It's it totally part of me now it is what it is it does what it does and I just have to cope with it as best I can with a fantastic support system of my husband, son, Tipsy the cat and my in-laws.

I've had many many tests done many many times in many different hospitals by many different doctors and specialists I've seen tests evolve and totally disappear over time they've got better they've got more technical more detailed and more efficient.

I've learnt over these many years that I am the only person that knows how lupus affects me I always tell the doctor or specialist I'm seeing exactly how I feel. What has been going on what is happening right now and what happened in the past leading up to the problem for me this is very important to get my problem sorted out.

I believe that I manage my lupus and other associated problems psoriasis rheumatoid arthritis Raynaud's syndrome myself I am very aware of blood test meanings and what markers and levels certain items should be I have made it my job to do this. It gives me great peace of mind and and and helps me feel secure in knowing that I can track how my drugs are affecting me.

That's not to say that Lupus isn't a difficult illness it comes and goes it rises and falls and it pretty much does what it's going to do when it's going to do it. I've had it so long it's part of me and I am part of it. I try and keep myself positive most of the time and have amazed many doctors over the years with my positivity.

As I'm concerned the longer I can do something means the longer I will be able to do it and I'm not willing to give in to Lupus at all of course unless I really have to!

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Karen

How long have you had lupus? https://www.carenity.co.uk/forum/lupus/living-with-lupus/how-long-have-you-had-lupus-2388 2019-07-19 18:16:20

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Unregistered member

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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Unregistered member

21/11/2016 at 15:19

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How long have you had lupus?

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