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Lupus?

Posted , 5 users are following.

cj1992
cj1992

I'm looking for opinions .. this is the low down (sorry for the essay - just at a loose end)

June 2015 - I developed a rash all over my body - after a couple of days/nights the rash worsened and my elbows and wrists swelled and became red .. I was admitted to hospital twice and both times no one was able to say what caused it and nothing they gave me calmed the symptoms .. on the second visit they suggested rheumatoid arthritis or lupus .. it was a fair few months before I saw a rheumatologist. . She is still unsure what caused the 'flare up' .. Since about the age of 15 .. now 23 I have had redness across my cheeks and nose ... on a daily basis I have freezing cold hands and feet which are white in appearance! I have had terrible stomach pains for the last 5/6 months or so which I have recently seen my doctor about as I can no longer cope with. These have recently worsened and I doubt have anything to do with original flare up. I have also had ongoing joint problems predominately with knees, shoulders and neck to which I have had various appointments and diagnoses.

At the time this happened I was VERY stressed ... I was so tired for months following this - to the point it was affecting me seeing my friends and stopping me doing daily activities such as working full time and going to the horses. I am lucky in the fact I am in full time work however I still get very tired after not doing an extreme amount. Bloods were slightly abnormal on hospital admission but have returned to near normal after a couple of months.

I would be interested to hear other people's experiences and am only looking for advice and tips!

Thank you in advance ... smile

1 like, 3 replies

3 Replies

  • amber_6594
    amber_6594 cj1992

    Posted

    Hi cj so awful to here you got these problem at such a young age i thought i was young at 30 when i got lupus ... For the rash or redness on your face i had that to really awful it is what you need to do is befor using your make up use a high factor 50 or above spf of sunblock it worked so well that my skins now clear and i hope rhumatology find out things for you soon and keep nagging yupr gp to move things on
  • pam_87693
    pam_87693 cj1992

    Posted

    Hi well it does sound rather like Lupus I'm afraid. The problem we all have that Lupus can be a wolf like your rash that's why it's called Lupus as the rash resembles the mask of a wolf or a butterlfly wich flits about. As I have seen both I think the names are wrong! To me it's more like a shape shifter which gives you problems in one place then in another. If you only have the mask then it's skin Lupus but if you have say bladder problems or neuropathic pain it's SLE it's systemic! I hope this helps you to understand both! Good luck🍀
    • andrew_08416
      andrew_08416 pam_87693

      Posted

      Hi Pam and CJ 

      I'm still undiagnosed but my GP strongly suspects Lupus and I am still waiting for the Rheumatologist appointment for more testing. 

      CJ said something interesting about the stomach pains.  I too had an issue in January 2015 which couldnt be explained and nothing showed on a CT scan.  it was several months later in October when I had my flare and later develoepd the face rash which is my my GP is strongly suspecting Lupus. commenting that I match nearly all the symptoms.

      Whilst I continue to search for information between tests and being told one thing from the next I have read that the rash can appear in other locatons of the the body, and people get effected in different ways. 

      If it helps I also have an intollerance to the cold.  even in the summer you can find me wearing thick jumpers and a scarf. (not for fashion)

      hope you get well soon 

      regards

      Andy

       

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