A close family friend of mine has it. She found out because she had a serious of health problems (mainly a variety of joint pain) and she went to see her doctor about it, thinking it might be rheumatoid arthritis. He sent her to a specialist and he picked up on it. She's been on steroids for about a year now and it's helped a lot. Unfortunately she's totally a 2w1 and will not or cannot stop slow down, and continues to say yes to everyone when the ask her to work or ask for help - and this physical and mental stress exacerbates the symptoms. Whenever she does take it easy for a week or so at a time (that's about all she can manage) the symptoms reduce a great deal. I think the main thing is to know your limits.
INFP 4w5 so/sp
I've dreamt in my life dreams that have stayed with me ever after, and changed my ideas;
they've gone through and through me, like wine through water, and altered the colour of my mind.
- Emily Bronte
Does anyone have it? How did you end up getting diagnosed? How are you dealing with it?
No, I have RA. My rheumatologist dx'd me because of my symptoms and signs, x-rays, and positive anti-CCP.
Most cases are dx'd by rheumatologists. Good internists may suspect it and refer you. It used to be hard to diagnose but I think that has improved...not sure, it's been a while since I've seen the inside of a lab. Antibody screening along with inflammatory markers. Anti-ANA, anti-DNA, sed rate, C-RP, urinalysis (plus checking serum creatinine and BUN to check kidney function), and probably a CBC (complete blood count) to start. Depending on the doctor, other tests might be done to differentiate from other inflammatory autoimmune disease or conditions like fibromyalgia and chronic fatigue syndrome. It could go in any direction from there.
Dealing with it. Do you have any specific questions on that?
physical and mental stress exacerbates the symptoms. Whenever she does take it easy for a week or so at a time (that's about all she can manage) the symptoms reduce a great deal. I think the main thing is to know your limits.
I can certainly attest to this, though I don't have lupus. Like Redbone I have RA. They're somewhat similar diseases (mostly because they're both autoimmune related) and whenever you get screened for RA you inevitably get screened for Lupus, too.
I noticed that once I quit my incredibly stressful and miserable job my disease got better very quickly. Now I'm always busy, but rarely ever stressed and I think that probably has a bit to do with it (though I certainly can't discredit the meds). Knowing your limits is key, because you can flare and it will easily take a huge chunk out of your backside.
Diet can help. Mostly with lupus, though, since there are a lot of foods (as well as the sun) that can cause a lot of trouble for sufferers. Anyway, a lot of the medications overlap between the two. I take a drug called methotrexate and a good friend of mine's mother took the same for her lupus. It's a really shitty drug, but it works well for me. I think there are probably better options out there for those with lupus.
And yeah, do you have any specific questions about dealing a chronic autoimmune disease?