It Has to Be Genetic

By KFord74

Last Updated:

1 min read

I am waiting to see a rheumatologist to get the official diagnosis for Lupus and Sjögren Syndrome and have already been diagnosed with fibromyalgia.

Dietary restrictions

I am 46 years old and I'm dealing with gluten and lactose intolerance and multiple food allergies, and the lupus just adds to the gastrointestinal misery I'm already in.

Family history of lupus

I grew up watching my mom suffer with lupus for years and never thought until recently I would be suffering from her disease but here I am.

Searching for answers

From the brain fog, GI tract distress, dry mouth and eyes, hair loss, migraines, light sensitivity, stiff joints, etc... I just want to find a way to manage the chaos my body is being put through.

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Ava Meena Member

<inline-mention username="KFord74" user-id="4164877"/> I'm sorry to hear about all that you're going through. I also want to find a way to manage the chaos in my body - it feels like far too much at times! A few months ago I started suffering with dry mouth and worsening dry eye, and I was quite recently diagnosed with Sjogren's Syndrome - it's so hard to deal with new symptoms especially before you've been able to find ways to lessen them or get them under control. I'm sorry that you are having health struggles like your mother has had, but I do hope that whatever diagnosis you receive leads to a good treatment that leaves you feeling so much better. Wishing you the best. -Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team
Dawn W Member

If you're like me in an area with poor excuses for doctors you're gonna go through hell on earth. I've had almost EVERY Lupus symptom for like 15 years. My life is over. I can't do anything anymore, yet these local doctors say I don't have Lupus because not all of their test results are positive except for my ANA. I can't get the one and only rheumatologist in this area to see me because the ANA titer number isn't high enough. Sun almost kills me. I used to LOVE the sun. I'm in constant pain and brain fog. Short term memory is non existent. My hair is falling out. I have no eyelashes. My eyes get inflamed and very blurry vision on those days. GI problems galore, and now my heart is not working properly. Many other symptoms besides those btw.. In the meantime these doctors treat me like I'm a mental patient and only offer me antidepressants and psychological therapy. I'm pretty much ready to give up honestly. (No I'm not suicidal). I just had my first visit with a different doctor (my third in as many years), and she said pretty much the same crap as the previous ones. Now I'm hoping maybe the dermatologist can diagnose me based on my facial rash and blisters on my face. I know it's NOT rosacea! 😤 God help me. 🙏
1. Erin Rush Community Admin
 
 <inline-mention username="Dawn W" user-id="4176029"/>, oh, no. I am truly sorry. I wish I had some perfect words here, but sometimes, words just don't help. I wish every person had the medical care they need AND deserve. Well, if I'm making wishes, I would wish for the eradication of conditions like Lupus. You shouldn't have to fight this hard for a diagnosis and for treatment. And if I can offer you nothing else, I can offer you that. You are NOT mental. Your symptoms are real. And you deserve to be treated with respect and dignity and to have your illness treated with the proper medications and treatment protocols. Keep fighting. I know it's hard and I know it sucks, but we're here for you. Gentle Hugs, Erin, Team Member. 
2. Dawn W Member
 
 <inline-mention username="Dawn W" user-id="4176029"/> I actually meant to say all of my tests come back NEGATIVE except ANA.
Dawn W Member

Thank you
Dawn W Member

I'm sickened by this entire situation. I have to read something over and over to make sure I didn't make a spelling error or whatnot. I was a spelling/grammar genius before all this started. I can't even find my mistakes unless I go back and look hours later. It scares the heck out of me. 😭
1. Erin Rush Community Admin
 
 <inline-mention username="Dawn W" user-id="4176029"/>, I feel like you should be able to get a second (or third!) opinion about your lab results. An elevated ANA indicates that something is going on in your body that should be properly addressed, not dismissed. I know it's not easy to get a second opinion in your area and that just stinks. I am so sorry. Best, Erin, Team Member.
Dawn W Member

Thank you