Lupus: Does anyone have it or know anyone with it?

[Grockle]

I've been ill on & off for a while & had millions of tests. I was told it was likely to be Fibromyalgia/ Chronic Fatigue but today my consultant said he thinks it is Lupus. I need more blood tests & an MRI & go back in the new year. I don't know anything about Lupus - I've googled but everything seems a bit vague. Just wondered if anyone can tell me anything about it from personal experience.

[Clumsasaurus]

I know 2 people with it. Both super active once it was controlled, happy and generally healthy people too.

I hope you get the answers you need from the drs

[chipstick10]

I know someone with it, she is an older lady already in her late 60's. she does get very very tired and has to have vitamin d injections as she can't absorb it properly because of the lupus. She sometimes has steroid injections also. Apart from feeling tired, she's happy and well.

[Grockle]

Thanks for the stories... it's reassuring to know that it can be ok. I'm very glad to know that. It helps knowing people who have experience of it.

[Grockle]

Oh Korma, sorry

It's taken me over a year to get this far with tests & diagnoses. I hope your appointment goes well.

There's a few of us on a thread here... not about Lupus, but ME/ CFS/ Fibro etc which are similar (and what the thought I had til now). If you need some support or a place to vent, come and join us

[piprabbit]

Hi - I have Lupus (SLE). It's a PITA to diagnose, I'm sorry that you've been ill and left to worry.

I was diagnosed about 16 years ago but have been in remission since diagnosis and haven't needed any medication for the last twelve years or so. I was really ill and struggling before I was diagnosed, but with effective treatment it was fairly quickly under control and I started to feel better. Since then I have had two children - which probably explains my current feeling of exhaustion better than the Lupus.

Much of the information is really vague because Lupus can affect almost any organ in the body - so everyone is slightly different. Have you found the Lupus UK website yet? They have lots of useful information.

There are lots of sites about Lupus in the USA - a word of warning to tread gently at first. I found it very worrying to read about other people's experiences. I also found that some of the older books (available in libraries etc.) were very pessimistic about long term prognosis - I'm glad to say that I later found out that they were really out of date and new treatments have improved outcomes hugely in the last 25 years.

Good luck, I hope you get some answers and some treatment very soon - and feel free to PM me if you would like to.

[Grockle]

Thanks piprabbit, your post is so helpful and very reassuring. I had a quick look at the Lupus UK site and it seems to have lots of information.

I'm at the stage now of just wanting a diagnosis. I've been too ill for too long to keep taking time off work for being tired/ achey etc!

Korma, I have had quite a bit of time off work too. I've gone back now but am struggling (I'm a teacher). DP acts as my carer so mine is the only income so there's a lot of pressure for me to carry on... I don't get DLA. My mobility is poor too. I walk with a stick outside or clutch to walls inside. I crawl up the stairs to bed and on bad days, use a wheelchair. It's miserable!

Look after yourself.