Please help.

lauren720lauren720 Member New Member
Hi everyone,

I’m a 27 year old female and got my first possible Lupus diagnosis at the beginning of this year. I went to the dermatologist because my hair wouldn’t stop falling out, they ended up sending me for blood work in which I tested positive 1:160 (i think it was that titer) for SLE. I had always gotten sick frequently growing up but never thought anything of it.

long story short, I went to my Primary Care in which she found elevated white cell count. High C4 Count and elevated C- Reactive. She sent me to a Rheum... in which he just asked if I was experiencing any shortness of breathe or joint pain or swelling. At that time (Feb 2018) I wasn’t.

Fast forward it is now December, I’ve been in and out of ERs for the last two months because I’ve had terrible heart palpitations, chest pain, brain fog, fatigue, joint pain, swelling of my feet, my left hand is always numb or tingling. 

The first EKG at the first hospital revealed possible AFib... then after further testing they couldn’t explain why my heart was beating irregular and they let me go and gave me a diagnosis of anxiety. The second one Did CT scans because they thought I could have a blood clot in my heart or lungs. Instead they found small modulate cysts on my right lung. But they weren’t concerned. 

Its now the end of December. (I do suffer with anxiety, depression, but it’s never ever been this bad)

I haven’t left my bed in three days because my body feels like it’s in pain. My joints hurt. My brain is so discombulated I can’t focus on driving or work. And I keep having bad panic attacks.

can someone please shed some insight into this? Anyone else with similar symptoms & they found out they did in fact have an autoimmune disorder?

my body feels off, weird, and it feels like I’m dying.

any help would be great. Thank you.

Answers

  • julie_mangrumjulie_mangrum Member New Member
    Oh Sweetie, I’m new here too and can’t offer any insight as I don’t know what’s going on with myself either, but I can offer you friendship. Many of our symptoms are the same. My email is [email protected] if you’d like to talk. We can learn together. 
    Julie
  • RebekahVRebekahV Member New Member
    I realize this is a little late, but I've had fatigue among other symptoms since high school - I'm now 27 as well, and was diagnosed with lupus several months ago. I've been taking Hydroxychloroquine for a little over 3 months. I went in to see my Rheumatologist who was surprised that I was not feeling better on meds (truth is, I actually felt worse then when I first went in, as I was able to keep up with daily activities three months ago, but lately have been needing even more sleep and haven't been able to keep up with much of anything). 

    I had a lot of the same symptoms as you about 2 years ago - especially the heart palpitations, chest pain, lots of vertigo and dizziness, brain fog, etc., when I was working full time. I didn't have health insurance at the time, so I wasn't able to get things checked out then, but having those type of symptoms meant I wasn't able to keep up with my job (I was on contract). I spent about 3 months on my couch just letting my body rest after losing my job. Some of my symptoms were definitely increased due to stress. For example, while I still do experience fatigue and other symptoms, I have not had heart palpitations or chest pain since losing my job.  

    I now work from home and keep a very light schedule - I only take on jobs that I feel good about. Like I said, I definitely still have symptoms, and at this point I'm not sure what's actually lupus related and what's not lupus related - but I will say listening to your body is the best thing you can do. Give yourself rest when you need it, and listen to your body, even if it means completely changing your lifestyle. 

    Doctors still don't completely understand autoimmune conditions, so even if you are diagnosed with one, in my experience at least, it doesn't necessarily provide as many answers as we'd like it to. 

    I recently began working remotely with a holistic practitioner, who tests for things like food sensitivities, hormones, gut yeast infections, etc... a lot of these things are what eventually cause autoimmune conditions. I'm excited to be testing for these things as it gives me an opportunity to actually begin repairing some of the damage done to my body. If you haven't found the answers you're looking for with conventional doctors, I might go this direction.

    Best of luck to you! Would love to hear any updates as well!
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