I haven't been diagnosed with lupus, but the past three years have just been random symptoms popping up randomly. I'm new to this site and am hoping to just talk to others with lupus to become more educated on what might be going on inside of my body. It's scary to have symptoms and not know what is wrong. I've heard that lupus and other autoimmune diseases can take a long time to figure out. I'm a 22 year old female who is also a teacher in graduate school.
I've had joint pain mostly in my hands, knees, wrists, and feet, though my whole body tends to feel it's made of a bunch of rusty hinges at times. This has been going on since 2008. I've had recurrent bouts of visible and invisible hematuria (blood in the urine) and severe kidney pains since late 2010-early 2011. My nephrologist thinks it might be IgA nephropathy, but I haven't had a kidney biopsy done. I think I had a small amount of protein showing for a little while, but it seems to have disappeared, though the pain and heavy-yet-invisible blood in my urine keeps showing up in all of my lab work. I've had many EKGs this past year in the ER and at my doctor's office, and only during my physical did a systolic murmur show up, which after an echocardiogram seems to be a tricuspid valve regurgitation. I'm waiting to go back to the doctor in a week or so to get that particular fiasco straightened out. While in the ER for the kidney issues, I was told I had a high RDW, or red blood cell distribution width. Basically, my red blood cells were all different sizes, meaning some weren't fully formed, yet had been released into my body. I don't know if that's a spleen thing or something else, but I've read it is related to anemia.
I'm on plaquenil, 200mg a day, and I think it is helping take the edge off of the joint stiffness and pain, but I'm going to ask if I can have the dosage increased. I'm aware of the eye problems it can cause and am seeing an eye doctor.
I was diagnosed with Lyme (though whether I had it or not is debatable; positive screening test, but then, nothing) and Babesiosis (a co-infection which I actually tested positive for) and was on a two year rollercoaster of antibiotics and Mepron. I don't remember a tick bite, but worked at camp and remember a lot of ticks. I felt great on antibiotics for a while, but Mepron wiped me out. I've heard that sometimes people with joint issues feel better on antibiotics, possibly for the same reason they can feel better on antimalarials. I'm not sure, but for at least three months I forgot what joint pain felt like. It was quite amazing. I've had enlarged spleens here and there, and when I had mono recur I had an enlarged liver. When I was in the hospital for my kidney issues, I had a slightly enlarged spleen.
What I have:
-joint pain and stiffness
-IgA nephropathy or something similar
-supposed tricuspid valve regurgitation or mitral valve issues
-high RDW, red blood cells different sizes, maybe anemia?
What I don't have:
-swelling (just my big toe right now, very rarely are my joints swollen)
-fevers (but I've never gotten those often, even when very sick)
-positive blood work or an elevated sed rate
I've seen a rheumatologist, but he wasn't friendly or encouraging. Basically flopped my hands and my knees about and sent me home with, "You're fine." Obviously I'm not fine if I came to see you.
My general doctor has been pretty good with everything and seems to be suspecting fibromyalgia, but do people with just fibromyalgia have all of these other problems? I'm not trying to belittle the pain and suffering of it, I'm just saying that I think there is more than just that going on, if that is even what is going on here at all.
Does anything I've described sound like lupus? Or does anyone have an of these issues and knows more? Can you get a lupus diagnosis without the blood work coming out in a specific manner? There doesn't seem to be a lot of information floating around and I think it's best if I talk to people who live with these things. Thank you for your help in advance! I truly appreciate it!
First of all - Welcome to the group! It is definitely scary to have all of these things going on with your body and you don't know what's going on. I can't answer all of your questions, but I can answer some of them and share what I'm experiencing.
One thing to remember: No two people's symptoms are the same.
Lupus is really hard to diagnose and it does take a long time (some people on here have gone years without a diagnosis). I'm not a doctor so I cannot say whether or not you have Lupus. Your doctor would have to do a few tests and go over your symptoms in order to diagnose you.
One thing I wanted to point out is that there are over 60 different autoimmune diseases (there's a list of them in the "Lupus Erythematosus Symptoms" section. It'll be one of the topics on the top of the page) - some of which have overlapping symptoms. It’s also possible to have more than one disease - like in my case I’ve been diagnosed with both Lupus and Fibromyalgia in a month’s time, but the two doctors who diagnosed me don’t agree (My PCP says it’s Lupus – the Rheumatologist I saw today says it’s Fibro).
The trouble with doing blood tests for Lupus is that they don't always come out "positive". According to the Rheumy my blood came back "negative". It doesn't mean I don't have Lupus - it just means my blood work isn't showing any signs.
I can totally share your frustration with the Rheumy you saw. The Rheumy I saw wasn’t friendly or encouraging either. I was so frustrated during my appointment that I didn’t even want to talk to him anymore. I just wanted the appointment to end, and it felt like he felt the same way.
I can’t say if your other symptoms are due to Lupus or Fibro. That would be something your doctor would need to check on and coordinate with your other doctors (or refer you to someone).
Maybe some of the other members on here can share if they’ve experienced any of the same symptoms you described earlier.
Blessings, Love & Aloha,
"Kindness is just love with its work boots on"...
"No man stands so tall as when he stoops to help a child." Abraham Lincoln
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littledove (01-05-2012), Saysusie (01-06-2012), steve.b (01-05-2012)
hi little dove.
ty has offered some very good advice.
i just wanted to add my hello.