My wife's friend has lupus. What a sneaky disease

[turbo]

My wife's best friend had been experiencing a lot of joint pain in the last couple of years, and has lately been experiencing rashes and unexplained lesions. The friend's identical twin sister has been diagnosed with lupus, which is a tough one because such auto-immune diseases can manifest in so many ways that they can mimic a lot of other conditions. Since my wife's friend has been experiencing the symptoms similar to her sister's, I have spent a bit of time on the Internet looking for the symptoms and effects of the condition. That is one scary auto-immune disease that can progress to organ-damage.

Apparently, the condition is more prevalent in non-caucasians. Is anybody here dealing with lupus (self or loved one)? I'm not asking for medical advice (forbidden here) but for coping mechanisms to help my wife's friend. The skin conditions have cropped up since last summer and the friend loves to get out and paddle her kayak, and I have read that sunlight can cause the skin problems to become more severe. UV exposure on the water on a sunny day can be pretty high.

 

[Evo]

Sorry to hear that, has your wife's friend also been diagnosed with lupus? If not, insist that she does so right away.

 

[turbo]

Sorry to hear that, has your wife's friend also been diagnosed with lupus? If not, insist that she does so right away.

The condition needs to be tracked for some time, if I understand it, because there are lots of possible symptoms, and they can mimic the symptoms of other conditions. If there are enough of some of these symptoms presenting, one could be mis-diagnosed with MS, though since her twin has been diagnosed with lupus after a few years of observation, that's where my money would be. That's too sad, because she loves paddling, taking her step-son fishing, floating in the pool, and other outdoor activities that could become problematic if the skin conditions persist and sun-exposure becomes a stronger trigger.

Auto-immune diseases and odd externally-triggered conditions really stink, in part because most doctors are ill-prepared to sort them out. You can't just show up at a doctor's office and ask why you have chronic joint-pain that gets really bad sometimes and eases up other times and expect a diagnoses. You have to have a consistent history with a doctor (and have a doctor that is better than a quack) in order to get stuff sorted out.

 

[Evo]

She needs to have a battery of tests done. While tests might miss Lupus, many will indicate if there are markers for Lupus. Since Lupus can affect different organs in the body, there are tests that will also check those organs.

Web MD has 3 pages of tests listed for lupus.

http://lupus.webmd.com/guide/laboratory-tests-used-diagnose-evaluate-sle

http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=tests-and-diagnosis

 

[ThinkToday]

Lupus is one of those cases where there isn't a clear answer on what will happen. My wife was diagnosed many years ago, and hers has been well controlled with little impact on her life AFTER she came to terms with having it, the medications, periodic exams, and tests. However, a friend was diagnosed a year or two earlier, and her's was aggressive and required chemotherapy several times, etc. She has had a sad time with it.

Having lived with a loved one with it for years, my advice would be to urge her to read about do's and don'ts and do what the doctor says. According to my wife, knowledge is power, but don't dwell on it. Do what needs to be done, and don't forget to live as normal a life as possible. For the first couple of years, my wife read about it a lot, dwelled on it, worried a lot, and fretted every test result. At some point, she realized things are what they are and accepted she has a illness related routine. I can't say "test time" doesn't bring concerns, but beyond that brief wait for results, she doesn't spend anymore time worrying about things she can't control.

As for what you can do, IMO, let her talk, if she needs too, otherwise avoid it. At some point, hopefully, she will be able to accept it like my wife. Hopefully, she too will be well controlled.

 

[Ms Music]

I actually was going through lupus testing a few years ago. I quit because I couldn't stand the test after test after test after test... (and I am not as bad as many) Make sure your friend has a rheumatoid arthritis doctor. But since her sister has lupus, she probably all ready knows that. I was just going through my regular doctor, but after reading quite in depth on lupus (his advice), I found most people were diagnosed by rheumatoid arthritis doctors. I need to get back in and finish the testing for health reasons (not going to get into it here unless you want me to) and I have decided to have my dr refer me onto a rheumy and hope the testing goes quicker this time.

Other than the rheumy doctor, my only advice is to support her! People think you are crazy. YOU think you are crazy. Let her talk. Listen. Encourage her. Support her. Let her know she isn't crazy. She should still be able to enjoy her outdoor activities if she takes care of her body properly. Sunshine IS a big trigger, but there are ways to cope with it.

If she has too many questions and concerns, there are a few good lupus boards that she can join. It helps to realize that you are not alone. I never joined, but reading others stories made me realize that it was okay if this IS what I have.