Do I have lupus or something else?

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jessie5876
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/23/2014 2:13 AM (GMT -6)   
Hi I'm wondering if I have lupus, or some other sort of autoimmune disorder, or maybe something as simple as a vitamin deficiency tongue Over the summer (around june) I finally went to see a podiatrist because my pinky toe had been red and swollen for over a year with no injury. (it's even still swollen now which makes it over 2 years.) She ended ordering blood work and found that I had a positive ANA at the lowest positive titer (1:80) and low vit D (33 while cutoff is 30). I never did go out in the sun for the test though and I read you should. It was homonuclear if that matters. Note: I have no family history of anything auto-immune related, except maybe an aunt who has thyroid issues but I forget what it is.

She ended up referring me to a rheumatologist. Not exactly sure how competent she is though because at the end of the appointment she kept saying, "oh wait I forgot to check this" Anyways she determined my pain issues were likely mechanical since it worsened as the day went on. The pain was mostly in my lower back. I agree with what she stated. She ran other blood tests to be cautious (just a general CBC i think and everything is normal) I saw her September of '13

However since about early December I've been having pain in basically every joint in my body. Definitely don't think its mechanical and it gets worse when I'm out in the sun. At first I couldn't pin point any sort of cause because it came at random (any time of day doing any activity, even resting) Now though, I'm positive it is related to the sun. It was at its worse when vacationing in Hawaii (lots of sun!!). I was even getting shooting throbbing headaches in addition to the joints. The pain is always symmetric, just at times one side may be experiencing it more severely. Sometimes (esp at night) i feel so weak like even holding papers to study is too hard, it feels too heavy. Sometimes it even feels like my whole body is aching and that's its not even in a joint its just everywhere(like malaise from the flu).

I'm not really sure if my fatigue is what people with autoimmune disorders experience but I do often wake up tired (but who doesn't with an alarm) It seems to hit me throughout the day, rather than being constant. I'll feel so tired, it especially happens when Im driving (maybe the sun again coming in through the window.) As for the other criteria I do get canker sores a lot, I don't know if they mean that when they say oral ulcers. Only one at a time though, normally they're linked to pringles haha. But the 2-3 I've had already this year aren't linked to my pringle addiction. They normally heal on their own in a week or less.

Anyways yet again for the last two weeks, the widespread joint pain is back. I was actually feeling severe pain in my right foot so I went to the school doctor and she said I'm over-pronating and referred me to the same podiatrist that I saw. She said I should also ask the podiatrist for a new referral to the rheumatologist since my symptoms are all new.

I asked if that was possible to have lupus since my titer is so low and have no history and she says she did have a patient who was diagnosed w/ lupus w/o any titer but it took 3 years to get the diagnosis.

Anyways kudos to those who read it, thank you so much for the advice.

ETA: I feel like Im missing other stuff so if you have any questions ask. I also have been hearing something about "lupus fog" Lately I keep having words on the tip of my tongue, words that are common and that I use all the time. not sure if thats what most others experience but thought i'd share.

Post Edited (jessie5876) : 3/23/2014 1:25:23 AM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/23/2014 2:25 AM (GMT -6)   
You do sound like you're photosensitive. You can try covering up with a large sun hat that prevents sunlight from getting through. Cover your arms and legs with sun protective clothing. I buy all of mine through coolibar.com.

You need to avoid all sources of UV rays.

The fatigue and joint pain sounds so familar to me. However, I'm not a doctor and it takes a good rhuematologist to diagnose lupus. There are 11 indicators for lupus, but you need to meet only 4 of the 11.
Once you're diagnosed to doctor will start you on medication which will help you feel better.
Make sure to check out lupus.org for more information on lupus.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

jessie5876
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/23/2014 2:37 AM (GMT -6)   
I'm normally in long sleeves and pants when I'm outside since I horseback ride. and always wear sunscreen, but i know they make clothing with uv protection as well like the ones in your link. Ive been inside all day today finishing an essay and the only time I went outside to bring something to the post office and got the malaise feeling driving there. The malaise one is the that gets me. Most of my other pain is shooting or burning and comes in waves so I only have to grit and bear it a little at a time so its not that bad. Though sometimes the waves last a couple hours every couple seconds. Luckily the horse person mentality helps, we're really tough and stoic. My trainers motto was "if you are falling you aren't trying!" My mom still hates me for the time I insisted I get back on despite having a concussion, whoops...

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/23/2014 12:14 PM (GMT -6)   
If I'm reading you right you've been referred to a rheumotolgist twice but haven't quite made it there.

A rhemuy is the Dr to diagnose and treat Lupus and other auto-immune disorders. I suggest you get there as soon as you can -- there is treatment and you can feel better!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

jessie5876
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/23/2014 12:31 PM (GMT -6)   
I went to the rheumotologist once before, but yeah I was just recommended again to go (not actually referred yet) she told me to ask the podiatrist to refer me again.
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