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I'm suspecting lupus but my doctor's out of town for a bit, any help?
Hello, friends!

I've been really sick for the past year (sometimes I'm entirely debilitated, other times I feel well enough to leave the house and do the occasional fun thing). My suspicion is at least fibromyalgia, and possibly/probably lupus (hence the post here).

I'm a 20 year old female. The first time that I felt particularly awful was March 2014. For several months beforehand I'd felt increasingly fatigued, achy, and bloated/nauseous/crampy. In late March, I got really, really sick, and in the beginning of April I was in and out of my doctor's office every other day. I was diagnosed with active EBV (mono), which explained most of my symptoms of the moment, but was incredibly weird. See, it was weird because I'd had the EBV virus in me for ages (as most people do), which was revealed on an EBV test when I was 14, yet I'd never had any symptoms - previously, I'd essentially been immune to it. But in spring, it wiped me out. I was in the ER a few times with horrible joint pain, including one time where I was screaming in pain for hours on end, but they treated me like a drug seeker and sent me home (when I couldn't even walk) with a condescending, "we can't let pain get in the way of our lives!"
Over two weeks, the mono symptoms (headache, sore throat, fever-feelings [weirdly enough, my temp was low], malaise, muscle weakness, whatever) faded, but I stayed sick. My GI symptoms got bad enough that I was hardly eating anything for the nausea, my joint pain and muscle aches stayed horrible, and I lost lots of hair. I no longer had a mono infection, but I still couldn't do anything. I'll make a list of all the symptoms I've been experiencing, but I'll do it at the end so I can focus on writing the overview first.
I saw a gastroenterologist, who theorized that I might have seronegative celiac disease, so I was strictly gluten-free for a couple months. In August, she found that I had an H. Pylori infection, so that was treated with a triple course of antibiotics. Since we found out what the cause was, I was told I could for sure eat gluten, so I went back to it happily (and had no negative effects or GI attacks from it!). The infection cleared up, but I still have some minor GI issues, which have been named as IBS and minor gastritis. However, GI issues are nowhere close to my main issues.
Over the summer, I started to feel a little better. Cold and damp weather makes my joints absolutely kill, so the dry heat was helpful. I wasn't better, but I was able to leave my house and do some things I enjoyed.
In September, I started to feel achy again. All of my previous symptoms have been coming back stronger (though they never actually went away), more painfully, and it's not a recurring mono infection. Rain storms make my pain the absolute worst, but with the weather staying in the 50's and overcast, I'm very achy and extremely fatigued. Symptoms are as follows...
- Horrible joint pain, symmetrical and everywhere. It's usually worse in the morning, when I feel horribly stiff.
- Muscle aches, usually in my back
- Easy bruising
- Hair loss/thinning
- Dry mouth
- Dry eyes
- Heat and cold sensitivity
- Night sweats
- Cold fingers and toes, especially when I wake up.
- Worsening acne (I don't believe there's anything autoimmune about it, but it's bugging me and for all I know, it could be related. The issue is that I have a bad habit of picking at any raised skin, whether it's acne or a random bump, so it's hard to distinguish between slightly bumpy rashes and skin outbreaks. Possibly worthy of note - my skin got awful after I took ortho tri-cyclen lo (oral contraceptive) for a couple months, so badly that I got cystic acne and had to stop taking the pill. I know that acne isn't a lupus thing, but my skin reacted so harshly to an estrogen-containing pill that I figure it's worth mentioning.)
- In a similar vein, when I do get blemishes, they dry out very quickly. It's like my oil production is high, but my skin is dry at the same time, because every spot I get dries out faster than they used to.
- Going back to my joints, they pop and click a lot.
- Frequent infections. I've always gotten infections all the time, and sometimes it's worse for no apparent reason. My freshman year of high school, I had constant joint and muscle aches and so many frequent infections that I missed 26% of the school year. Granted, I was dancing for hours most days, so that's probably what caused all the pain.
- Shortness of breath. I know I've been laying around at home for much of the last 3/4 of a year, but the shortness of breath that I'm having is extreme. Sometimes it happens when I'm just sitting or laying down, but when I move around it is very, very noticeable.
- My eyes feel very sensitive to light. I think this is just because I spend most of my time indoors, since I'm sick (too fatigued, and in too much pain, to go anywhere), but it's enough that on an overcast day, when I walk outside, I have to squint. I keep my phone and laptop on the dimmer side.
- My skin has always been very, very sunlight sensitive, although to be honest, we don't get much sunlight outside of July-September around here (pacific northwest). I sunburn in about ten minutes without sunscreen. This isn't new, though, and it's a familial trait as we're all very pale and freckly. My dad moved to America from Scotland, and Scots-Irish people are often very pale and burn easily. I don't think it's a symptom, but who knows, since these things are genetic.
- Speaking of genetics, my dad has hypothyroidism and his dad (my grandfather) died of Chrons. Our only other familial health problems are frequent mouth sores (which my dad and I both get) and alcoholism (although no living family members are alcoholics). No cancers or anything, but definitely an autoimmune history.
- GI issues of a vague sort, mostly bloating that never leaves (my GI doc prescribed Butyl, which only makes it worse, it seems) and some constipation. Mostly tolerable.
- Headaches. Sometimes they feel like tension headaches that are centered right behind my eyes, but other times I get what are called icepick headaches, where one small spot will hurt very intensely for just a few seconds. I've been getting them since I was maybe 14, and my dad gets them, too.
- I was not anemic, last time anyone checked, but I am chronically iron deficient. I'm a vegan, so I have supplements, but haven't taken them for a couple months thanks to my temperamental stomach.
- My RF was negative, celiac panel negative, but I don't know if an ANA was ever run. I see my doctor next week, though, and can request more tests.
- Small amount of protein in my urine last April, also slightly elevated BUN (if I remember correctly).
- Either my CRP or ESR was high, don't remember which, but I had mono at the time so it only makes sense.

There's probably more, but I can't remember right now and I've written bunches anyway. I got blood taken at urgent care today (I'm impatient, what can I say), but they're useless and can only run anemia and blood chem tests for me. So, I'll check in with my doctor when I see her next week. I know many people suffer for over a year, but a year is long enough in my opinion! I'm beyond ready to know what's wrong, so I can maybe feel better. Sigh. Thanks to anyone who reads this! Any advice appreciated. Hope you're all well.
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1 Answers
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1530171 tn?1448133193
ohheyitsac, welcome to the forum.
Well well, you sure gave a fairly detailed account of your medical history.
Before proceeding with complex investigations, some of the
suspected fundamental imbalances need to be explored and treated if and  when confirmed positive.
So here's my list of things you must rule out 100% !!!
(beware of flawed tests, false negative results, false positive results, professional bias, "deliberate"medical ignorance etc.)

1.Iron deficiency. Your low iron levels could affect you as much as having anemia (which shows probably  subclinical  levels on your labs- doctors do not necessarily consider this seriously, even if many anemia symptoms are present,like in your case )
Iron  shots might be the answer. Low iron also affects thyroid function (which I'll discuss later)
2. Vitamin B12 -specially methylocobalamin B12.
Since you did not mention  any tests and because you're vegan,
you need to know your B12 levels. The effects of low B12 are too many to mention. If you a low methylator then you're in for a long
stay in medical limbo.
In this scenario you need ample methylocobalamin b12 and methylfolate to boost your methylation.
Testing for this is a bit complex. It can be missed by MMA testing or even worse, your doctor might say your levels are fine
because s/he's not looking for the methylated (neurological) forms of B12 and folate. The only other test is a CSF homocysteine test, which should be repeated, since
homocysteine levels can fluctuate.
My opinion is a trial of methylocobalamin and methylfolate
would be a better test, if symptoms improve.
3. Viamin D deficiency must be ruled out. Low cholesterol,
low D intake, low exposure to sun, high cortisol, vitamin d polymorhism (genetic) are some of the reasons.
Vitamin D signals over 300 genes and it has receptors in the entire body. Most vulnerable is the digestive and G/I systems, which have an abundance of receptors.
Low vitamin D affects thyroid function and low thyroid function affects vitamin D.
4. Low thyroid function if left untreated or undertreated will lead to
autoimmune or other serious diseases. Lupus is one possibility.
Unfortunately, MOST thyroid tests are flawed , as they assume that there must be something wrong with your thyroid gland, which only represents the minority of hypothyroidism.
The majority of hypothyroidism is due to thyroid resistsnce,which  is missed completely by conventional tests.
My suggestion is to ask and insist to get Free T3, Free T4 and
Reverse T3 tests in order to truly rule out hypothyroidism.
You can also do on your own Dr. Barnes Basal Temperature Test. Just do a search for it.
5. Rule out candida. You may do on your own a self-test:
Search under "Saliva test for candida"
It is often missed by tests because candida is cell-wall deficient
and it can conceal itself inside of cells.
This makes also as difficult to eliminate.

Feel free to ask any questions, however, please note that my
comments are not intended as a replacement for medical advice.
There are probably other imbalances to  be considered, but the above would be important to rule out first.

Best wishes,
Niko


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