Hi everyone, I appreciate any responses I get.
This started 2011 with sun issues. I was starting to get rashes when in sun briefly, would get light headed, sore and overall feel like I had the flu if I was in it at all. It began to get worse and included alot of joint and muscle pain. I saw family md who ran tests, I had a slightly positive ana 1:80 speckled. coupled with symptoms he suspected lupus. I did see a rheum, who suspected it as well as few months later, same ana results with a positive ssa. But they weren't convinced it was lupus. I began to get much worse with fatigue etc and ended up losing my job because of it.
Fast forward to present. I went to er a few times last year because I didn't have a family md or insurance. My latest stint there was for terrible joint pain, mouth sores low fever. They said ana 1:640, low levels of blood and protein in urine everything else good except vit d. Took prednisone, felt better. Now the last two weeks, I have such terrible pain in my hands that I can barely open them. They feel hot internally but are cold to touch. Ache like the dickens! Pain in my knees and ankles too, legs feel icky and my vision has been a bit off. Fatigue thru the roof.
Just need to know if you other lupies out there think this is lupus....maybe ra?? I am at a loss as its been either borderline lupus dx from doctors or they say no. I don't know what to do...feel worse as the days go by. Thoughts from anyone??
Thanks so much for your time everyone
Welcome to all land. The land of connective tissue disease.
For starters, SSA is present in most patients w/ Sjogren's Syndrome (dry eyes and mouth) and 20-30% of those w/ SLE. This is also one that crosses the placenta and may induce neonatal lupus and congenital heart block if you became pregnant. SSA can make you more sensitive to the sun and is seen in nearly all patients with a skin disorder called sub-acute cutaneous lupus erythematosus
I personally think you have lupus. It sounds like you have the symptoms along with the labs to prove it.
Are you familar w/ the 11 criteria for a lupus diagnosis?
I am familiar with the criteria...one doctor went over it with me and i've researched it a bit online since.
My pain has become almost unbearable. It almost feels like I'm aware of where my bones are in my hands, arms, ankles and knees. Does that make any sense? My insurance doesn't kick in until May and I'm getting a bit scared. The mornings and night have been especially rough, I feel weak and tired, even combing my hair hurts!
My chest has been feeling strange, almost like food is stuck or something. Who knows! This is all been very difficult and I'm nervous. Do you think I should go to the ER? I hate to go without insurance and not sure what they'll do for me. Again, I appreciate your feedback :)
I know exactly what you are talking about....I'm aware of where my bones are in my hands, ect. That is probably caused by low vit D.
Some of your symptoms sound like fibromyagia. The over sensitive nerve endings. The best thing for that is good sleep.
But I don't think that is all you have going on. You definitely have some autoimmune thing going on as well.
Since you don't have insurance until May, I suggest you avoid all the triggers. Stress, sugar and sun exposure. So take good care of yourself, eat good and drink plenty of water. You could check to see how much it would cost to get your vit D level checked. I hate to tell you to go ahead and take vit D because a person can get toxic levels of vit D.
Many times when I was so sick I thought I should go to the ER, but my dauther's boyfriend who is a nurse told me they won't do anything. But many times I thought Iwas dying. But then I would get OK. Sometimes my dr. would give me a steroid shot to see if it would help. I would definitely try that b4 an ER visit.
Thanks so much for your advice. I will watch my diet and try to rest, sleep has been tough lately but I'm working on that. Start my new job next week so we'll see how the stress goes lol.
My vit d levels are low, I did have that checked in the fall. I take it daily now. So glad to hear someone knows what I mean about the bone pain, it's hard to explain to others. They look at me like I have 3 heads!
My symptoms haven't subsided, good old rash on the face has reared it's ugly head. But I'm taking advil, trying to relax and hoping for the best. Er will only be if I can't get out of bed. Don't think it will get to that point.
Great talking to you...Appreciate all your thoughts.
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