Can exposer to sun cause flare up including bowel issues ?and what is the difference between lupus and SLE arnt they the same thing ?

Hi been quite poorly this past week and now a bit confused , rummie back in April insistent I don't have lupus but , do have sjorgrens ,raynaulds , fibro , and ME , anyway felt very unwell this past week which ended up with the most horrendous tummy issues I am sure I don't need to say any more than that no dignity at all . Anyway got myself to gps and they saw me as an emergency and locom GP as my own GP away ,she had read my notes before I went in and said that she had briefly assessed my notes and new I had SLE which did take me aback but to be honest so unwell didn't question it , anyway she told me if I didn't improve over weekend I was to call out of hour service and she was putting on my notes that I was to go into hospital well I have done everything she told me and I am on the mend a bit I have been off work since jan any advice would be apprieciated . Chris

9 Replies

  • First of all, yes SLE is Lupus. Secondly the tests for many of the auto immune conditions are not infallible. There are hoards of people who have failed tests to be told later that they do have one condition or another. The rheumy for whatever reason decided to not diagnose SLE but the GP thinks differently at present.

    It could be that your symptoms have suddenly become more severe, perhaps allowing a previous negative test to show as positive. Or maybe the GP is using experience to judge on the basis of all of your present other symptoms.

    Can SLE affect the bowel? I and many others would say yes.

    In fact these days I am more of the opinion that many of the auto immune issues actually start with some sort of bowel dysfunction that may not become obvious till much later.

    SLE flares can be brought on by sun exposure, so another yes.

  • Thank you just very confused , have friends everybody trying to be supportive but one or too think I should be getting out more and I am really not up to it I used to be the one who would organize everybody else I used to be the butterflie of my group now I am a mouth really fed up I have using fibro Heailth unlocked since May they have been lovely but they have said I have more going on ,I have been still reading post on here but not posting anything as don't feel I had the wright thank for replying. Chris x

  • Hi Chris

    Why don't you ask your GP to clarify what diagnosis has been given in the letters they have received from your rheumatologist? You could ask for copies of the letters of these letters too. Sometimes it is easier to understand what the doctors are thinking when you read it and have the time to digest it all.

    The other thing I would say is that I have SLE and Sjogren's. Both share very similar symptoms and can result in similar treatment. Sometimes I don't know which condition is causing me the trouble, but I get treated and followed up, which is the main thing.

    I definitely get bowel involvement with flares, but I had ongoing diarrhoea which turned out to be coeliac disease, so report your symptoms to your doctors and get checked out.

    Keep asking questions until you get the answers you need. Having these conditions is difficult, but understanding what's going on and helping manage your own health does help. So ask and ask and ask! It's your body and your health.

    Best wishes xxx

  • Thanks ,when I have pushed the rummie he doesn't like it ,so as far as he is concerned I have left it I did chat the head of the practice who I am due to see tomorrow he told my my rummie was good and wait for the rest of my teats to me done, I just keep being told I am not well ,(which I am very much aware of ) to trust them (being the doctors ) and be gentle with my self , but it does not stop my employers ringing me and telling me they want me back in work by the 21 st of July and the rummie telling me that I will be seen in 4 months and he will get me back to work but not till I have had all my test done and he is happy !

  • That's not an easy situation to be in with your employers. Hopefully you can get your GP on your side and perhaps to write to your employers and explain.

    Lupus uk also have produced a leaflet for employers which might help. Even if you don't yet have a definite diagnosis, if it does turn out to be lupus they would have to bear this in mind.

  • Hi Shadows-walker

    So sorry to read your having such a tough , confusing time with your health! Firstly, Bowel Problems can come with Lupus either Cealiac or Irritable Bowel Syndrome so like Lupylass has said you need those symptoms checked out if they recur.

    Secondly, if you have any problems with your employer about returning to work go to your local Citizen's Advice Bureau who have employment specialists who can help. Will save you a lot of stress! Hope you feel better soonX

  • Hi shadowswalker, SLE stands for, systemic lupus erythematosus...(spelling).

    Now don't quote me on this one but, when I was first diagnosed, it was just lupus. Then I had issues with my eyes and anaemia, which was caused by the lupus. My rheumy at that time said, the lupus was now, systemic, as it was affecting me inside and out.!!!! Most of the problems we have are caused by the lupus, including gut issues. We collect a lot of other diagnosis's along the way, but they are all related to our lupus. I think apart from the common cold, which we are more susceptible to, all these other conditions are because of the lupus.

  • Hi yes well just home from GP and he has said that I have very complicated health issues and that yes I have mixed conective tissue and he is pretty sure it is lupus but we have to wait on rhummie but if he sees me back at work he will be very angry and that not under any circumstances am I to return before I am given the all clear so it's a waiting game .m

  • I think digestion plays a massive part in immune conditions, but that's just my opinion. I've had a very low immune system all my life - loads of childhood illnesses and allergies etc, then when I was in my early 20s I developed horrible digestive issues, which I had for at least 10 - 15 years before I got on top of it. Like you've mentioned, we don't need to go into detail, you probably get the idea. Very restrictive. They've tested me for every digestive condition you can think of and never come to any diagnosis. I was diagnosed with SLE about 18 months ago, but I think I have had it much much longer.

    Anyway, my digestion is controlled now - I control it though a very healthy diet and lifestyle. Basically a vegan and grain free diet, with nothing artificial and nothing processed and no yeast or sugar. Even fruit sugars bother me so very minimal fruit. What you would call a very clean diet. I eat a LOT of veggies, and have things like green juices, and I ferment foods as well, which has really helped. It's been quite a journey, but I'm happy with where I am now with my digestion - as long as I'm careful, then it's controllable. Now I can even have a little bit of bread or rice or something like that now and then - maybe if I'm out for a meal and really fancy it. But I NEVER have meat or any dairy or anything artificial.

    So, don't panic, you can get on top of the digestive issues - I'm living proof of that.

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