help with diagnosis of SLE

Posted , 3 users are following.

  For sometime now i have been feeling unwell to the point where i am struggling to work and can not sleep due to pain, i can not walk far and it is affecting my socail life greatly. I have visited my GP several times and now i am attending referals but with no diagnosis insight , i feel very low and struggle to cope .I have  Many of the SLE symptoms yet still i have no diagnosis , can any one help.

0 likes, 8 replies

Report / Delete

8 Replies

  • Posted

    Hi Louisa,

    I would ask you GP to refer you to a rheumatologist who will be able to confirm if you have the condition.  It seems really hard to get a diagnosis these days.  I wish you well and hope you get the answers to your condition soon.  Good luck.

    Report / Delete Reply
    • Posted

      Hi Sue

      I have been to the rheumatologist and she has reluctantly  refered me to a doctor who specilises in sle. The rheumatoligist said i did not have the rash so she thinks i don't have sle regardless of the fact i have all the other symptoms. Still frustrated.  Thank you for your kind response

      Report / Delete Reply
  • Posted

    I agree go back to your doctor, hang in there you will get sorted but it does take time, I took about 10 months before I felt anything like my normal self, now iv learnt I must rest work rest oh and rest, but it does get easier once your on the right treatment, good luck, feeling like crap won't be forever.
    Report / Delete Reply
    • Posted

      Hi Marion

      yes been to the rheumatologist and now have a referal for a specialist in sle but as i told sue the rheumatologists  response was" you don't have the rash so you don't have sle"  but thats rediculous as i have a majority of the other symptoms.

        Some days just getting out of bed is too much and trying to sleep with

      the pain is even worse, but i am grateful for your kind email.

      Report / Delete Reply
  • Posted

    Hi Louisa,

    Tell your GP that you want to have bloodwork done for both Lupus and Epstein Barr Virus. (EPV) These are specific blood tests different from regular bloodwork and should definitely show what levels you have of key receptors to diagnose SLE. If you have any rashes on your body ask to be sent to a dermatologist and he also can send you for this type of bloodwork. I had my diagnosis within about a month. Then I was sent to the rheumatologist to determine how bad my SLE was. There are so many autoimmune diseases and they all have similar symptoms so it's really important they determine which one you have. A lot of people have EPV and don't know it. I knew I had it but didn't know it could lead to the lupus. Sunlight is also a bad thing to stay away from so use a hat/umbrella and lots of sunscreen until you get some final diagnosis. My determalogist told me this would be a very long process and it is. Try and get lots of rest in the meantime. Take care.

    Report / Delete Reply
    • Posted

      Hi Cheryl

        Going to my Gp on Friday and i am going to mention the bloodwork for Lupus and EPV like you said . Trying to rest but always feel guilty and feel i let the family down as i have aiways been very active like many of us on here . I m sure you know what i mean, if i think something needs doing i would rather do it than ask and thats what is so upsetting about all of this. I feel i ve lost me , i have a very active mind and my body is letting me down  and intern i m letting my kids down aswell as my partner.thank you for the surgestions and support. 

      Report / Delete Reply
    • Posted

      Hi Louisa,

      Hang in there. Once you get some sort of diagnosis, then you can move on to the treatment, but not knowing what's wrong just leads to a lot of anxiety, frustration and depression. It's important for your partner to read up on all the possibilities that you may have with autoimmune disease. This way he will be able to hopefully support you. We women are better at taking care of others instead of ourselves but it's now your turn. You HAVE to come first for now. The chronic fatigue is the worst for me because it's a constant reminder of what I can't do. The word "NO" was never in my vocabulary but I have had to learn to say it more now in order to best cope with this. My daily routine was sleep, eat, go to work and then rest on the weekend so that I could start all over again the next week. I was lucky I only had to look after myself but I could barely do that so I understand you feelings of letting your kids down. The more you rest during the week, allows for play time on weekends. Maybe you can get a cleaning lady once a month to just do basic cleaning. I used to be able to clean my apartment in 1 hour, not it takes me 3 days. I honestly know from experience, if you try to do too much, it will make it worse for you so you are better off just doing a little bit at a time. Good luck on Friday and let me know how it goes with the doctor. Take care.

      Report / Delete Reply
  • Posted

    I have sle but I don't have the rash, not everyone does, and not all the time anyway, as for rest, sorry but that's what will keep u well, it's finding a balance, adjusting your life style will be better for all of you in the long term. Good luck,
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up