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Why So Fatigued And Ill Feeling If Blood Work For Flare Is Normal?

Why So Fatigued And Ill Feeling If Blood Work For Flare Is Normal?

My 19 year old son was diagnosed with SLE in June of 2009. He takes 400 mg of hydroxychloroquine daily. His recent blood works is normal (except for the positive ANA), but he feels flu like awful, without the "cold" symptoms. His GP tested him for the flu, mono, viruses, bacterial infections, etc. He doesn't have any. I wonder if any of you have experienced extreme fatigue and flu like symptoms even when your blood work wasn't showing a definite "flare." If so, is there anything my son can… read more

A MyLupusTeam Member said:

I feel like that all the time and my labs have been fine. The fatigue will ALWAYS be there, I feel nauseous all the time, depressed etc. I just had to stop working last August because the lupus fog and fibromyalgia is really doing a number on me but my labs are normal. It's just the nature of the beast called Lupus. It sucks I know but he will know his body and know if something is really wrong to the point he needs to get checked out. He will also learn the norm of how lupus works as time goes by. I'm 38, have had lupus since I was 19 so I've learned over all these years. I hope he gets some comfort if possible but he just needs to rest when his body tells him to rest otherwise the next day his body will feel worse. Don't overdue things, we tend to pay for it if we do. Sending lots of soft hugs.

posted over 7 years ago
A MyLupusTeam Member said:

I have literally left Dr. Offices heart broken and depressed because it seemed like they are lost as to"why" or "how" my flares, pain and exhaustion don't make sense.... The most I can say is listen to your body and Rest as much as possible!

posted over 7 years ago
A MyLupusTeam Member said:

I just got diagnosed last year (a year after graduation) but now realized I was dealing with the symptoms all through college and high school. Its tough at any age, but especially when we are supposed to be at our healthiest and most active! I missed finals week 3 semesters of my 4 years. Thankfully I had understanding professors and a way to make it up after the term ended. The most important thing to me was learning what to say yes or no to. Even if people didnt understand!

posted over 7 years ago
A MyLupusTeam Member said:

I totally agree with MatejaBaltaGimene. When my blood work is "normal" I feel my worst. Hurt all over joints and muscles. When they say I am in a flare do to my blood work being high or low, I feel better with less pain. I do not think the doctors understand Lupus as well as we do. I take the same dose of hydroxychloroquine as your son and I was also diagnosis in 2009.

posted over 7 years ago
A MyLupusTeam Member said:

Thanks for your insight, Jessica. My son is slowly starting to feel better, slowly but surely. He's made some changes to his routine and is getting more rest. I can't thank all of you enough for helping me to understand that, even without terrible blood work, you can feel flares.

posted over 7 years ago
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