LUPUS UK
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I was just diagnosed 2 weeks ago with lupus. Can you just have mild lupus with limited symptoms forever? It seems like everyone that has lupus gets worst over time. I’m looking for answers on how to deal mentally with my new diagnosis.

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Hi Parker42,

Welcome to the LUPUS UK HealthUnlocked forum. We have a really lovely community who are always willing to help and support one another.

Sometimes certain situations such as being newly diagnosed can be overwhelming. We published a blog article which has a section discussing what to do for those newly diagnosed which I hope will be of help to you: lupusuk.org.uk/getting-diag...

Lupus presents differently in each individual therefore, it is rare for two people to share the exact same experience. It is important to bear in mind that people with lupus can experience periods of remission where their disease activity is lower thus, reducing signs and symptoms. You may wish to download or request our free information pack at lupusuk.org.uk/request-info...

Would like someone to speak to? If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk with your name and address.

Please let us know how you get on, wishing you all the best.

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Thank you!

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Hello, I had my first flare up a year ago which consisted of joint pain and fatigue. I knew something wasn't right and the lupus was evident in my bloodwork (positive ANA, low complements and positive double anti-dsdna). That being said I was put on plaquenil and have been feeling great since. Part of me thinks I may have had lupus fatigue for years but always attributed it to being a work mom and it wasn't until the joint pain that anything else was suspected. I personally know two other people living well and working full time with lupus. One is my daughter's preschool teacher and the other is a co-worker of mine. The best advice my co-worker gave me is to remember 'it's just a bad day, you don't have a bad life' when you are feeling unwell. The best advice I can give you is try not to worry about the things that could happen, they haven't happened yet! Also, keep moving, yoga, pilates, etc. will help you tremendously and clean eating. I am sending positive thoughts your way.

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Thank you so much for your supportive words. I’ve noticed that you only hear the worst case scenarios about lupus. I was looking for something encouraging.

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Parker42 - I was diagnosed 12 months ago and if I’m honest it’s taken me a while to get my head around it all.

I didn’t want to be ‘sick’ especially when I look ok, but have slowly grown to accept I have lupus is does not define me

I work full time in a stressful job so I’ve had to make adjustments- like driving in later, working from home more, staying over , but my work have been great and supportive

Everyone is different so everyone’s normal is not your normal our rhemy nurse said concentrate on you and not how others suffer - albeit this forum is great for support and advice

From reading posts we are all different you need to take time for meds to work and figure out what works for you- I haven’t changed things radically but tweaks here and there and much more conscious of my diet and fatigue and that has helped

Have said here before I was advised to keep a diary - what I did, how I felt, what I ate and that has helped me understand what elements of life affect me or make me flare - so maybe give that a go - I don’t go in for war and peace just bullet points

You’ll get there - keep smiling

H

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Thank you so much.

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Hi it ok me saying this as I can remember what it’s like but please try not to worry as it could make you have a bit of a flair it horrible when you get told but this site is fantastic when I want to vent off a bit of steam I do it here when you get your Meds sorted hopefully you will feal better but use this site there’s a lot of people who have been through or going through what you are going ,feeling and there’s also a lot of hummer as well so I promise you you will giggle now and then you will feel better soon it’s also important to have someone to support you hope you feel better soon

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I’m so thankful I found this forum. Thank you.

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Hi Parker42. I was diagnosed back in March after having a mother of a flare up. Had been unwell for about a year but just kept going until I couldn't move, literally couldn't get out f the bed with the pain and pure and utter exhaustion! It knocked me like a tonne of bricks I'll be honest, I WAS DEVASTATED!!! I didn't want to be told that I had a condition like this for the rest of my life I'm only just turned 31 and was very much in denial about the whole thing (the lupus and being 31;)), I even decided the the doctor was wrong and it was a virus that would run its course, I'll take a good tonic and that will sort this out, what did he know?! Ha was I wrong, I was out of work for three weeks with the pain and pure exhaustion and went back part time for another three weeks and every day would push to stay 10 or 15 minutes longer than the day before. It was not easy let me tell you but I am back now to full time and up until two weeks ago I was absolutely flying it and even thought maybe I was right all along? maybe he got it all wrong? Maybe the plaqunil isn't actually doing anything and it was just a virus! No sooner had the thought crossed my mind and bang it started to come back again, not as bad now mind, I am still working full time but I am writing this from bed having taken plenty pain killers as my legs are in agony, my ankles are swolen and I'm tired after the week. But for the past two months I was about 95% back to normal and delighted with life. Maybe the sun has caused this flare I don't know, but I live in Ireland so I needn't worry the sun will be short lived and the rain and cold will once again return :) But I have to say on the bright side the plaqunil appears to have stopped my heat rash appearing, for the first time in my life I don't have it so there is a silver lining! We will get there and learn to adjust and know our limits (and try to push them) because lets face it we don't have a choice! We will have good days and bad, but who doesn't eh? I don't worry about the future of this as it won't get me anywhere, maybe this is as bad as my condition will ever get and I can manage away like this and maybe it will get more serious, only time will tell. I hope you start to feel better in yourself and stay positive!! Xxx

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I’m so sorry your having such a hard time right now. Thank you for your input. Hopefully it will pass and you’ll feel good again. I don’t think people understand how painful it can be when your having a flare up. I’ve started a low acidic diet and try to workout everyday in hopes that maybe it will help, but when your in pain it is absolutely not possible. Stay positive my friend and give me an update soon. I’m hoping it will be good one.

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