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Hi, I do not have a Lupus diagnosis yet but my new primary care provider is leaning towards it. My symptoms that I now recognize as such started last year. I developed an itchy rash above my eyebrows and joint pain. This summer I drove the free lunch bus for the school district. It was very hot here so I wore shorts and tank tops. I broke out into hives-- I grew up here (desert side of Washington State) and this has never happened here in all my 45 years. Went to my old Dr and she said I might have become allergic to the sun or it could be Lupus. No tests no nothing. I switched Drs and joint pain/ popping has gotten worse. Some mornings I wake up and it seems my whole body hurts and my joints pop. Along with that since August I now have an often reoccurring non-itchy rash along my jaw on both sides and sometimes on my cheeks. Blood tests showed inflammation. I'm being referred to a Rheumatologist. Any advice/knowledge would be appreciated. Thank you!!
0 likes, 3 replies
lilian05079 valerie31833
Posted
It was thought i might have lupus when my ESR, CRP and ANA levels were high..it turned out i had Polymyalgia Rheumatica..when i saw the Rheumy he asked my symptoms which were pain in neck shoulders hips and thighs each morning, very painful , but subsided after about an hour..i also had a rash across my cheeks and nose which turned out to be rosecea..not a lupus butterfly rash. Also he carried out a dsDNA test which is a gene associated with lupus which i did not have.....lupus pain is associated with joints my pain was as it turned out much later was not PMR but Osteoarthritis....have you had all the above tests plus dsDNA test? The rash you have is probably associated with the sun that lupus patients get when exposed to the sun...if you have not had all the above tests ask to have them done before a firm diagnosis...
mindy_11814 valerie31833
Posted
I had similar symptoms for years prior to getting dx this year . I mean I was treated for shingles , allergies , and in 2014 I had urgent gallbladder surgery . That's when everything went down hill . I got rashes on face , swollen joints , protein in my urine a lot, fevers , swollen lymph nodes, and so tired I couldn't walk to bathroom . I finally have 2 yrs got my dx . I had every symptom but blood work was negative at first then it was positive. My oncology dr said it could do that but it's rare but not impossible plus my momma , brother & niece have autoimmune diseases on top of cancer that runs high in my family . My momma I didn't know about Bc I assumed cancer was bad enough but she told me one day " didn't you know that me & your brother have thyroid problems & autoimmune diseases ?" I told her had I known that they might have focused more and got dx earlier . I was dx this past August & things have continued to snowball . I hope you're able to get a proper dx ! Sun does make you worse ! Even tanning bed . I thought I was allergic to tanning lotion I had no clue lupus did that ! So yeah , I feel for you & it's a difficult disease to dx from my understanding and that's why they use your symptoms. Let me know how it goes ! I'm always wanting to learn from people like me and make friends Bc nobody understands at all !!
kim09619 valerie31833
Posted
Hi Valerie.I'm new to the group.Have you seen a Rheumatologist? I was diagnosed in 1996 with lupus.I have seen 4 doctors,fired them all.I finally found one I like.I've been seeing her for 2 yrs. I also suffer from chronic fatigue,fibromyalgia,chronic pain.I get the butterfly rash on my face,joint pain,muscle pain low grade fevers.my arms and hands cramp up.Summer is my best season when I have less pain,but can't be in the sun,I get the itchy rashes.I take plaqunil,it seems to help.I just wanted to let you know when looking for a doctor find one you are comfortable talking to,and one that really listens to you.I wish you luck