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Ok I am 28,I have SCLE and I found this out a lil over 1 year ago..Since being told this is what I have,I have noticed things about me and how I feel that I have never felt before..such as..
fatigue
nausea
extremely dry eyes
itchy scalp
light colored rash on my neck,chest and back ( I went to the dermi who found the lupus,but he is saying this rash is not the lupus at all,and is not sure what it is,just gave me some cream to help with itching) could this be the lupus?
overall feeling sick
diarrhea
constipation.
dizzy spells
confusion
These come in waves..Are these called flares? I always thought a flare up is when I get this rash on my arms..Which is how we found about the lupus in the first place,but I have not had the rash on my arms in months and I get these waves alot more often..
After being told I had SCLE,I noticed that I have waves of the above symptoms..I have told my dermi as well as my rhuemi.And both keep telling me not lupus related.But I have heard from so many people with lupus that say it is..My rhuemi just recently put me on plaquanil? ( Im not sure on the spelling,but I now its oftenly given to patients with lupus).But I have not started it yet because my dermi told me not to spend the money on filling the script until my lupus is most active which is the summer months..so here is my problem..I will feel fine,until these waves hit me then I can not do anything at all. how can I make them believe its the lupus and not all in my head! I feel like I am losing my mind and its so frustrating! How can I start to feel better more than I feel bad?? Now I am being told I need to see an eye specialist about my eyes..They get so dry that my eye lids stick to my eye balls! And its very painful and very hard to see..They are saying thats lupus related but everything else is not...Is anyone else having this problem or had this problem? If so how can I make them listen to me?





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