LUPUS UK
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Hi I have recently just found out I have connective tissue disease/ lupus , which I have never heard of, I am finding it very hard to manage the pain, and my emotions, I work full time but struggling can anyone give advice in how to manage the pain day to day please

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Hi, welcome to the forum, we all have been through similar aituTions, so you're in good company here. It is scary and bewildering and it takes time to get one's head around it but the right treatment will make everything more bearable. Medication for this disease usually takes time to make a dent in the disease activity, so you'll probably be managing with antiinflammatories and steroids for a while, whilst the others (hydroxycloroquine perhaps?) take effect. Once the disease starts to calm down, your pain and overall being will improve, so don't despair.

Be prepared for people around you not to understand what you're going through, so try not to feel let down. But this forum will become a life line, it did for many of us here - so feel free to use us as a sounding board anytime you need to.

Take care and be strong!

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Hi Cazza

Welcome to the forum, Purpletop has given you great advice.

Having a diagnosis of Lupus is a big adjustment , you may need to change your working hours but the secret is don't make hasty decisions and be kind to yourself. Take CareX

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Welcome cazza. You've got some great replies. This forum has made all the difference to me during the past 3+ years since I first discovered lupus & multisystem conditions have been affecting me for ages. The 'process' (of figuring out my version of lupus and which meds can help most) that followed my provisional diagnosis has been very rewarding, and now at 60, I feel better than I have since my 20s...and the solidarity & info sharing here on forum seem to me to have been as vital to this improvement as the treatment given by my consultants.

Otherwise, the only things I can think of to add are: have you been to the Lupus UK website...where you can find out where & when your local support group meets...+ there is great info available there...online info + you can request leaflets & booklets, written without too much medical jargon, that will help you begin to understand both your symptoms & the diagnostic-treatment process & how to lifestyle mangage things (pacing your activities, diet & nutrition, exercise etc), ..and you can give this lupus UK literature to your family, friends & colleagues so they can begin to better understand the implications of your provisional diagnosis + Understand how to support you while you & your drs begin figuring out what treatment can help you most...and finally: have you had a go using the SEARCH function here on forum....it'll help you find your way to the loads of great stuff that's been saved here over the few years since this forum began

Glad you're here...hope you'll keep us posted

XO

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Hi, Cazza, just adding my own welcome. I'm one of those people who have found this forum a bit of a life-saver - even when I'm not up to replying to anyone, just reading what everyone else is going through is really helpful, in lots of different ways: I get useful reminders of how to manage this disease, advice on drugs - and most importantly, the knowledge that we're not alone. And it's wonderful to have somewhere safe to come and rant, or cry, or just moan. Whilst those around us might not understand what we're going through, on this site everyone does. So we're pleased to have you!

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I found this site really supportive as l came to terms with my health....it's good to know that others do understand and have experience of the complexities of the condition. Use it as part of your support network and give yourself a break...when you are so fatigued you can do no more...stop ✋ and rest without feeling guilty....learn to listen to your body...

Sending positive vibes

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Hi cazza, it is very hard to accept when you have just been diagnosed. I was the same when I found out about eight months ago. The other replies are spot on mainly listen to your body and rest and sleep when you need to. I agree about this site, it's been my life line for the past few months since I found it. I read it every day and just knowing your not alone with this awful disease is a massive and wonderful help. Xxxx

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Just saying hi. This site is very supportive. No one understands like the people here because we understand. Good luck and I hope everything settles for you.

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Hi Newby. I too am just diagnosed its a ver scary time. If you have any questions ask away. I have and I've had a brilliant response everyone is really nice and will give you an honest answer. Drs can diagnose you, but the ppl on ea have the true life experience of living with it. It's probably a long road ahead for the pair of us I suspect, but so many have said to keep in touch with the site. I had absolutely no idea what was involved with Lupus when I left the hospital and I'm far from an expert now, but I know so much more now through the lovely ppl on ea. keep posting and get the answers you need. Take care xx

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The Lupus UK website has some really useful leaflets on all aspects but particularly those concerning in the workplace for both you and your employer. I also downloaded/purchased some leaflets giving a brief outline of what Lupus is and how it effects people. Sometimes people don't like to ask and you don't want to feel like you are moaning on about your condition. Make sure HR department are aware of your condition and that you have a health plan within your workplace.

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Hi cazza42,

Welcome to the site. If you would like, I'd be happy to provide you with one of our free information packs about lupus? It has lots of useful info for somebody like yourself who has been newly diagnosed. Just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll pop one in the post for you.

As for managing at work, you might like to take a look at our employment guides. They offer a lot of information about managing at work and the support that is available. Digital copies can be read here - lupusuk.org.uk/living-with-... or I'd be happy to include physical copies in an info pack if you need them?

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