Sister got diagnosed with lupus, wanna hear personal stories about how the autoimmune disease progresses

When you’ve milked fibromyalgia for all you can, you go in to lupus. No one can tell if you have it not, so it’s great.

And 90% of 90% is fake lupus. It's their free pass for being obese and pitiable.

It's real and it's awful.

Sorry about your sister, OP. I don’t know what’s with the assholes here who are saying lupus isn’t real. Good god.

My sister has a lupus-like autoimmune disorder and her life is a constant medical juggling act. She hasn’t been able to carry a baby to term, and inflammation has caused all sorts of secondary problems.

A VP at my job of 10+ years had lupus. She is a horrible, reviled person, and once she told me she has lupus, I started to think her wild mood swings probably are related. She confessed to me that she works constantly (she emailed her staff at 2, 3, 4 in the morning with demands and traveled anout 70 percent of the time) because she feels—even though she knows it’s ridiculous and contrary to medical advice—as long as she is busy and moving, her disease might not get her. One day at the office she asked one of the people she abused to help her get to the emegency room because everything suddenly went white in one eye, and it turned out her retina had detached. That’s because of inflammation that weakened the tissue. ALL she wanted to do was work and every year or two she would be out for six to eight weeks because she fatigued herself and crashed. Sometimes she was covered in “poison ivy,” which was really a rash from the lupus. This shit is real; you can see it and it has real-life consequences.

Illnesses that you can't see are real too.

Illnesses that mostly affect females aren’t real.

I can’t tell if the idiots who say these illnesses aren’t real think they are funny or honestly believe it. It’s not funny. It’s like saying MS or ALS is not real. Whether you’re stupid or lack empathy entirely, you’re not making yourself look good or funny by being idiots.

I'm a 46 years old male and my doctor suspects I have some kind of autoimmune disease. After working out too hard five years ago I developed a constant inflammation around my knees and shoulders. Sometimes when I raise my arm high I can't bring it down without the help of the other hand because the should area is so sore. If I start to work out these days I can do it for maybe two weeks before the pains kick in and I have to stop again. The only exercise I can properly do these days is walking, and probably swimming but unfortunately there isn't a pool anywhere near where I live. Thankfully I love taking long walks outside listening to audiobooks but it would be great to be able to lift weights again as well.

So yes, these diseases are very real and they can be very painful. I'm sure there are people who are faking their ailments but what's the point of accusing practically everybody of doing it? Fibromyalgia, the laughing stock of the Datalounge, is a real thing as well. My sister got a diagnosis for it and I can tell you she's not the kind of person who imagines pains or tries to shun work by lying about being sick. She's actually doing too long hours at work and then has to take care of her kids as well, and the stress is probably one of the reasons she got the fibromyalgia. I still don't quite get where all this hate towards fibromyalgia is coming from here especially since (according to Wikipedia) about a half of people with fibromyalgia are male.

Thank you, R4. As I am someone who has been diagnosed with lupus as well as mixed connective tissue disease, I can assure you that this is not a diagnosis that doctors bandy about willy-nilly. To be diagnosed with lupus or anything else in the autoimmune sphere, you need to have verifiable diagnostic tests made. Since a diagnosis has been made, please tell your sister that autoimmune diseases very rarely travel alone. There's usually something else coming down the pike. May not be as bad, but there will most definitely be something coming.

Please tell your sister that direct sunlight is not her friend. She should really make certain that any time she's going out, even for a short period of time, that she has a lot of sunscreen on.

She should look up side effects of every medication she's been told to take. And be her own best advocate. The problem with a lot of people who have autoimmune diseases, they are so happy just to put a name to what's going on with their body, that they think the doctor knows everything. My doctor knew a lot, but I had to find somebody who was my partner in my health care, not a dictator. When he put me on medication that made me feel worse, I spoke up and we changed it to something I dealt with a lot better.

Also, your sister needs to learn how to tune into her other symptoms that she may be having. Such as inability to sleep, or if she runs the vacuum cleaner that now her wrist hurts afterwards. And above all she needs to rest when her body tells her she needs to rest. While mentally it's good to keep yourself busy, it is not really good for a body that needs to recuperate from probably years worth of little symptoms that have blossomed just enough to get a diagnosis.

A friend of mine had back problems that the doctor kept saying was sciatica. Turned out he had a spinal invasive type lupus that came on fairly suddenly, at least to the doctor. But over the course of about six months got so progressively worse he never got out of the hospital and passed away. Well, looking back at his symptoms, his doctor admitted that he should have sent him for further tests when none of the normal sciatica relievers didn't help. Tell your sister be her own advocate, don't take anything at face value, whether it be a new symptom or a new medicine. And she should leave herself notes to do a self-wellness check. Where she has to sit down and write down all the little aches and pains, and all the side effects she may be experiencing for medication and treatment. She should not ignore this. She can tame it, but she can never get rid of it. I wish her good luck.

“Historically, lupus caused people to die young, primarily from kidney failure. Today, with careful treatment, 80 to 90 percent of people with lupus can expect to live a normal lifespan.”

You have to give it to all those hypochondriacs who were so committed to faking their illnesses that they willed their organs to die through sheer will.

Take your “lupus is fake” bullshit over to some alt-right anti-women website, Milo. You have no power here. Be gone before someone drops a house on you.

Seal’s facial scarring is caused by discoid lupus. He is one of the unlucky 10 percent of lupus patients who are male.

The scarring is caused by inflammation that breaks down connective tissue and collagen. The scarring you can see on his face also reflects internal damage caused by lupus and similar autoimmune diseases.

The liver famously can regenerate tissue and repair itself; unfortunately, when it is regualrly inflamed, its repair process involves creating layer after layer of scar tissue that builds up and eventually this becomes liver fibrosis and then liver cirrhosis that blocks blood flow and ultimately causes organ failure and death.

Data Lounge’s “all autoimmune dysfunctions are mental illnesses of hysterial women!” thing is one of the biggest turnoffs of this site to me. It really is. I don’t get it. I don’t understand if people here think it’s hilarious to deny that these diseases are real, or if this site has cultivated a subculture of autoimmune disease deniers. It makes no fucking sense. Gay men are not supposed to be idiot conspiracy theorists. That really should be part of the Alex Jones world, not the gay world. Do better.

She can tame it, but she can never get rid of it. Exactly. Give your sister a big kiss from us. Wishing her nothing but the best.

Thank you r8 and the rest of you, I don't find it funny or cute either. I know people suffering from these mocked illnesses, some are family members, and it makes me sick to see anyone who is suffering be mocked. Save that shit for people who deserve it.

[quote] I still don't quite get where all this hate towards fibromyalgia is coming from here especially since (according to Wikipedia) about a half of people with fibromyalgia are male.

I have to correct myself: Around one third of people with fibromyalgia are male.

My friend's sister died from Lupus about 10 yrs. ago. At first, for years, she ignored it. At the end stage she was unable to walk, she was emaciated, her joints were swollen, and her features distorted. She looked like a complete stranger. Her body was ravaged from Lupus, she needed 24 hr. care as if she were 90 years old. She was 61 when she died. It is a horrible disease and anyone who is diagnosed needs to educate themselves and find a nutritionist, and really work to stay as healthy as possible.

Honestly, who cares if patients are male or female? 100 percent of people with cervical cancer are female. 100 percent of people with prostate cancer are male. Neither illness is imagined because the cases are restricted to one sex. Men and women have different anatomies, hormonal systems, genes and physiologies. Some of the people here are ignorant as fuck and belong on Infowars.

My mother-in-law has lupus. Like others have said on this thread, she also has experienced other health complications semi-related to the lupus. She is definitely her own healthy advocate and has learned to say when she knows something is wrong. She is not a fat frau, she’s almost too skinny because she has problems absorbing the nutrients from the insanely healthy, anti inflammatory diet she eats. Her symptoms seem to be very related to her stress level. The better she takes care of herself, rests when she needs to, and listens to her body the better she feels. Finding a good doctor who she feels supported by is key. She found one who has a lot of lupus patients after many years of searching.

[quote]I'm a 46 years old male and my doctor suspects I have some kind of autoimmune disease. After working out too hard five years ago I developed a constant inflammation around my knees and shoulders.

Have you been worked up for polymyalgia rheumatica? Get you a good rheumatologist if you don't have one already.

My sympathies to your sister, OP. Lupus is a lot more treatable now, but the flares are no joke. Also, bit of advice, if she looks for support online, try and dissuade her. In my own experiences with RA support groups, those bitches who spend a lot of time in them like to dwell on how miserable they are, and whine about any suggestions to modify their lifestyles.

Thanks, VotN, I'll ask my doctor about my options. The problem with me is that my blood tests don't show inflammation, or if there is it's very low grade. That's why rheumatism hasn't really been viewed as a serious option, or at least that's how I've understood it. However I know I should be more pro-active about findng the right treatment.

DL is mostly populated by fucking morons and trolls who don't believe in science or evolution or anything modern. They are trolls of the highest order. Just unbelievably stupid. Best to ignore these stupid fucks.

Is Lupus the one where you can turn into a wolf?