Could it be Lupus?

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I am a 19 year old female, and have had some health complications throughout my life. When I was younger, I was constantly coming down with infections like strep, ear infections, and sinus infections. Still, my immune system seems to be just as weak, and I've been in for such minor infections many many times. More recently though, since my freshman year of highschool, I've been experiencing more worrying symptoms such as nausea, appetite fluctuation, and stomach pain (basically a slew of gastrointestinal dysfunction). 

I've also had some serious fatigue, which results in me sleeping 12-16 hours per day. I could sleep for 12 hours, wake up and do my laundry, and suddenly find myself exhausted and ready to go back to sleep. 

There is also pain in my body, in joints like my jaw (which pops, clicks, and gets stuck), my hands, and my back; I experience inner pain occasionally, like a dull aching and sometimes sharp pains in my chest or stomach. Rarely are they unbearable, but every so often, it is a sharp, burning pain. My limbs also tend to be shaky and weak; walking alone makes me feel as though I'm dying.

In October of last year, after going into the doctor's for nausea, my doctor realized that resting pulse seems to be very high (around 110 even when lying down) and also seems to f jump from 80 to 135 when sitting. 

Other than that, I've noticed that my limbs are always cold to the touch, and can be tingly and numb often. They are very sensitive to the cold as well, and turn red; sometimes they hurt when exposed to the cold. I've also noticed some spacey-ness and dizziness, and constant dehydration.)

I looked at some of my labs, and although I didn't find what I was looking for (I remember something being wrong with my urine), I did notice that my ESR was around 25 even when my symptoms weren't nearly at their worst. 

Could this be Lupus? I'm so tired of feeling like this, and my doctors aren't helping me.

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  • Posted

    I forgot to mention my migraines and cuticle inflammation. Gosh, it's so hard to spell out your symptoms when there are so many that you can't keep track of them.  

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  • Posted

    I know this may not be the answer you are looking for, but I'd thought I would share as well:

    I am a 23 year old female who had experienced the exact same symptoms with you all throughout late childhood and teen years. I got infection after infection after infection, had gastrointestinal issues, extreme fatigue and exhaustion after simple tasks, and basically all of the symptoms you listed. I never understood what was wrong and just did my best to fight against it. Until it got so bad that I developed a few additional symptoms and with all of them combined ended up in the ER a few times, continued to get sicker, and lost my job at a preschool (which just happened at the very end of this past June).

    Since the beginning of July I have been going to various doctors regularly for testing and check ups. Even now, almost three months later, I am still in the diagnosis process. I have been diagnosed with fibromyalgia syndrome, but have a LOT of abnormal blood work pointing towards either Lupus or Multiple Sclerosis, which are both autoimmune diseases.  They are still in the diagnosis process and it could still be some more time and some more testing until they come to a conclusion. Also, most of the labs that show autoimmune antibodies attacking my immune system, along with the other abnormal labs, are't labs that are normally ordered and cant be determined by the normal lab-work. So even if your regular labs were normal (most of mine were), that doesn't mean you don't have a problem and you should always ask your doctor for labs if you suspect something. 

    What I have to say is this: Don't wait to get checked out. Go to your primary care doctors and tell them about all your symptoms, and ask to see a Rheumatologist (they specialize in autoimmune diseases). The longer you wait, the worse you will feel. Research shows that the conclusive diagnosis of most  autoimmune diseases tends to be a lengthy process, which means getting adequate treatment for it takes a while as well. Nobody on here can tell you if you have Lupus, but it sounds to me like something is definitely wrong, and it sounds like an autoimmune disease to me. But I am not a doctor.

    Also, what you have been feeling and experiencing is REAL. A lot of doctors will wave many of those symptoms off as simply "depression/anxiety" or "IBS" or "stress". But YOU know your body and your own self. So please don't let your doctors wave things off, even if you have to do the uncomfortable thing and INSIST on a referral to a Rheumatologist. Before I switched doctors, my old doctor kept telling me everything was anxiety, even though I had frequent diagnosable things like strep, tonsillitis, bronchitis, etc. in addition to the gastro symptoms, fatigue, easy exhaustion, headaches, and heat sensitivity, and other symptoms. So do what you need to do to get into a doctor. For me, I waited to long and now I am suffering. I am in pain and I am extremely fatigued and I am sick. I am going in for labs regularly and anxiously waiting diagnosis and treatment for what we know now is SOME kind of autoimmune condition. 

    I'm sorry that I can't conclusively tell you you have Lupus. But I can tell you that it sounds like it COULD be Lupus or another autoimmune disorder, that your symptoms are REAL and debilitating, and that the best thing you can do is to get into a doctor and start the process before things get worse for you. Also, in the meantime you can look up lifestyle changes that will help keep your symptoms *a little* more in check if you DO have lupus (such as not spending too much time in sunlight, giving yourself scheduled time to rest, listening to your body, avoiding garlic and alfalfa, and keeping yourself out of environments that may be more prone to germs to avoid infections). 

    I'm sorry you struggling with this sad. I hope you get answers soon and start to feel better!

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  • Posted

    Also, ESR is used for a LOT of different things, so it cant be depended on for anything. Generally, for conditions like autoimmune diseases such as Lupus, Rheumatoid Arthritis, etc, a whole collection of tests need to be done and all symptoms need to be considered along with the tests in order for a diagnosis. Plus, tests often need to be redone after 6 weeks and even redone again, on order to see what is going on with the body long term so that a reliable diagnosis can be made. Its gonna be a tough road friend, but you can do it! Stay Strong. smile
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    • Posted

      Thank you so much for the encouragement and the realism. I know it's hard to conclusively diagnose lupus, but what's even harder is being ill when no one believes you (not even yourself). It means a lot to hear from someone in the same position that there is at least some hope for a diagnosis in the long run. Thank you so so so much. 

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  • Posted

    Your very welcome smile. I definitely empathize with your struggles about believing your symptoms are real. I have have had doctors and family members doubt my complaints and accuse me of imagining it, blame it on stress/anxiety, and blame it on "emotional instability" (I am not emotionally unstable). And then after all of that you begin to doubt it yourself,  believe yourself to be weak, or crazy, or paranoid, or whatever. And the fact that professionals wave it off and/or take so dang long to come to a conclusive diagnosis makes it even worse, and so you go back and forth between doubting yourself and being so painfully miserably from the sickness that you KNOW its real and wish you could have some relief. Trust me, I know ALL about struggling to even believe yourself. The many symptoms and difficult nature of these  kind of illnesses is enough to drive a person wild. You are definitely not alone in this, so please please please keep fighting for yourself to get the help you need! I haven't reached the light at the end of the tunnel yet either, but I suffered through so much of it by now that I know that its better to keep fighting for the proper professional care than it is to wait. Hopefully both of us have a diagnosis, treatment, and relief soon. smile

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  • Posted

    Yes basically you could have Lupus and fibromyalgia can go hand in hand with any form of vasculitis.

    You need to see someone who can properly diagnose you. Have you seen anyone other than your gp? Are you based in the uk?

    I would suggest that you get in touch with Vasculitis UK and ask them for a good specialist in your area. They have a free helpline number and they are very knowledgeable.

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