Newbie

Hi all sorry bit of a long post, thought i would introduce myself im a 35yr old stay at home mum from scotland. I have not been diagnosed yet but was finally sent to rhumetology for back and joint pain after them telling me it was because i was over weight for years. She said i dont have arthritis but my bloods came back positive for Ro antibody. She took blod for a range of tests and also did a spit and tear test but i have to wait till the end of august for results. I was so shocked someone was taking all my syptoms seriously i didnt ask what she thought it might be. Since being home i have looked up online to see what positive ro means and can only find lupus or sjogrens syndrome, i have a lot of the syptoms of lupus including photosensitivity, joint pain and fatuige to name but a few but a lot of people have said because i dont have the butterfly rash its not lupus. Now after a bit about me comes the questions is that the case for lupus you need to have face rash ? Also is there anything else it could be ? or could they come back and say its nothing at all even with ro positive?

Thank you for reading x

4 Replies

oldestnewest
  • Hi, I'm 27 and was diagnosed with lupus 3 yeas ago and I do not have a butterfly rash so just because you don't have it doesn't mean it can't be lupus. What you describe does sound a lot like lupus or sjorgens syndrome. I have tiredness and had terrible aches and pains which thankfully is under control now and have photosensitivity, I'm not sure what else it could be but I know lupus can be difficult to diagnose,

    Hope this helps

    Lucy

  • Hi suziemeeee,

    Hugs to you as you go through this!

    I had a similar experience as Lucy. No butterfly rash, but very painful joints (knees, wrists, toes, fingers, shoulders), and exhausted most of the time. I was diagnosed with SLE 2 years ago.

    Through an unfortunate flu episode, I discovered that if I stopped eating processed food, the inflammation in my body quieted down and now I don't have much joint pain. (I take plaquenil and Chinese herbs.) It was hard to stop eating processed food and sugar, but I have done it for 1.5 years and huge difference for me in pain and tiredness.

    All the best,

    Calafia

  • I have lupus sjorgrens rheumatoid arthritis and hughe's syndrome I don't have a rash and had positive tests for everything, I had the overweight thing threw at me for years as well and always said although I was overweight I ate relatively healthy I.never ate the recommended daily calorie intake so really couldn't understand why I was overweight, seems with these illnesses it is difficult to lose weight, I was never taken seriously as it was perceived by the medical staff I'm overweight therefore I must sit on my backside stuffing my face with sweets and takeaways, this all changed however when I developed an unprovoked deep vein thrombosis last year and told the doctor everything that had been happening to me from childhood the tests got performed and here I am the saying "never judge a book by its cover" is something doctors need to practise

  • I don't get a rash either but I do suffer with a very red face at times and a burning sensation

You may also like...