Where do I go from here?

Just been to Doctors who said I have tested positive for Lupus and need to be re-tested in four weeks, then possible referral to Guys in London, this is together with an under-active thyroid, possible fibromyalgia, IBS, the list goes on!

Are these all linked do people think? Feel like I can't cope with all these problems anymore, I work, raising a family etc and am SO tired all the time!

Any advice would be very gratefully received!

Thanks

LucyKris

10 Replies

oldestnewest
  • Helo the fibromyalgia and IBS could well be all part of how your Lupus affects you. If you join the chartity Lupus UK I think you will find them a big help - lupusuk.org.uk/

  • Hi,

    i was diagnosed with Fibro a couple of years ago.

    At the same time i had a positive ANA so over time , i have needed to repeat the test ( 3 times )

    My Rheumatologist , has been treating me for Lupus too , even though he hasn't diagnosed me with Lupus yet !!!???

    I am repeating the blood test again in Jan and then maybe nearer a diagnosis then , who knows !?

    So yes , in my case i more than likely have both.

    Hope this helps x

  • Yep, all pretty much linked Lucy. I don't really understand why though, if you've already tested positive, you would need to be tested again. Strange but no matter. It would be entirely unrealistic to expect to get your head round or learn how best to manage it for at least a couple of years and you will do much better if you have a good grasp of the condition and treatments available so as Fab suggests your first stop should be lupusuk.org.uk. There are Contacts in many areas who will also be happy to talk to you about things so well worthwhile joining. Good luck!

  • I was diagnosed with fibromyalgia and IBS first, lupus second, yet the doctors consider my lupus to be the primary disease. Its just that the lupus has appeared more slowly. And right now it continues to march across me with its size nine boots. I totally share your exhaustion with it all and hope we both find some respite soon xx

  • Thanks so much to your all for your support and messages, it all seems we are in very similar boats with this!

    not sure why Doctor wants to re-test for Lupus, would have thought it is either positive or not?

    Guess it's just one day at a time with all this!

  • Hi LucyKris, I've got all the same problems as you. Firstly the doctors thought my symptoms were caused by under active thyroid, then possibly lupus. A few years later after severe sun reaction, they said definitely lupus. Now they've added fibromyalgia, & I also suffer with ibs. It seems like the list just keeps going on!

    The way I think of it now is this: when something goes wrong with your immune system, it can effect your body in many different ways, & these can change over time. So in a way these are all symptoms of one underlying illness.

    It's very scary & confusing to get your head around all this, I know. I have found websites such as the Lupus Foundation of America, Lupus UK & St Thomas' Lupus Trust to be very helpful. You could also contact your local lupus group so you can talk to people who have been through all this, & hear their advice & experiences.

    Christine Miserandino (not sure about the spelling of her second name) who wrote 'The Spoon Theory' & has the But You Don't Look Sick website, says that Lupus never comes the party alone. Some party that's going to be when we are all exhausted! But she's so right.

    You might find some helpful info about the ANA test on these websites, or you can email a question to a rheumatology nurse on the St Thomas' trust site. I was surprised to learn recently that there are degrees of positivity with this test so you could be borderline & they want to see if this changes. But it would be a good idea to ask your GP why he is doing this.

    I hope this helps a little, & very best wishes. X

  • Hi, yes it does, thanks, I too have an under-active thyroid and have just started medication, I really want to know if it is definately Lupus or not so I can move forward.

    my Doctor is great but still seems unable to give me any answers.

    I have read the spoon theory and it is so right, you get very little sympathy and support because people think you look OK and you can function albeit it a more limited capacity.

  • I"m sorry to hear you've been diagnosed with fibre IBS and Lupus too. In my experience it takes a long time to get a definitive lupus diagnosis, with ANA testing positive over 2 years that confirmed the diagnosis for me. My ESR carries on being high too. I was previously diagnosed with ME. I had IBS symptoms too, but I have had success with dietary changes that have really helped this (becoming gluten free has worked for me and now I get no bloating and pain) and I find avoiding sugar helpful too.

    It took me a couple of years to come to terms with my diagnosis but I feel a more resolved now. It helped to research all about Lupus on the websites others have suggested, and to acknowledge that it's a kind of grieving process, with all the different stages of denial, anger, despair, and acceptance. I wish you all the best in your own journey.

  • I would echo other advice, join Lupus UK. I was eventually diagnosed a year ago with Lupus after initial diagnosis of Fibromyalgia and having had IBS since I was 19, now 56. I am still trying to find the right 'path' for me, it is a bit of a slog and can be very frustrating and depressing, but Lupus UK have been excellent in helping me feel not so isolated. Good luck

  • Thanks guys, for all your support, am about to join Lupus K as so hard getting my head round all this! I am also going to try a gluten free diet as my IBS is so bad at the moment and anything has got to be worth a try!

You may also like...