I have lupus

I was just diagnosed with Lupus. After a year of not knowing what was wrong with me, I finally have a diagnosis. I have been so tired and in so much pain. It is a relief to know what is causing it but I am still sad that I have lupus. I initially went to the doctor because I had a lot of pain and fatigue, thinking it might be fibro and CFS but she saw white gunk on my tonsils so she tested me for strep, and it came back negative. Then she tested me for mono, and it came back positive. So oh great I have mono, and probably been having it for a long time now. She did some tests for rheumatology and sent me to a rheumatologist to rule things out and it turns out I have lupus, on top of the mono. I also have heard that mono can actually trigger lupus. So that makes sense. Anyway, I just wanted to get it off my chest. I feel sad that I have it. Yesterday was a horrible day and was in bed most of the day. But today was better. I even went grocery shopping for thanksgiving stuff so that was nice. Hardly any pain today so let's hope that the lupus flare up is cooling down or the mono is getting better. And that it stays this way for a long time. But I will never know what tomorrow may bring, and that is part of having lupus. You get good and bad days. I am trying to finish up my school semester. It is tough and I am very behind, and have not gone to class for a week and a half. My teachers are required by law to work with me since I went through disability services with documentation from my doctor of the mono diagnosis, but my teachers don't know about my lupus yet, cause I have not told them yet. I've had bad responses to telling people I have lupus. They say "oh I was told I had lupus and it turned out that I didn't have it, so get a second opinion" and another person said "the only way to diagnose lupus is with a spinal tap" which i'm sure as hell not getting one of those, and they are not regularly done for lupus. It's a diagnosis based on symptoms and blood tests. Then there are the family members who tell me what I should and shouldn't do now that I have the diagnosis "just eat this, or that" and it will "cure" it, etc. People can be so ignorant. I just want someone to give me a hug and tell me it's gonna be ok. I don't need my family and friends to try to be my doctors and nurses. That is what I have my rheumatologist for. Sorry for the rant, just been dealing with a lot. Thanks for reading if you did.

You are going through a very difficult time and I am so sorry for you. It is always sort of surprising how many people have medical degrees when you have an illness they have heard of but know nothing about. My suggestion is to just nod your head and say"UH-HUH" and then go on and do what the real doctor tells you to do.

Snuggles & huggles

I'm so sorry for what's happening and boo on them for not being more understanding and loving.

Thanks guys for the support and hugs! It feels nice.

Infection can sure set off Lupus. It at least sounds like you got a fast DX, that is something that can be quite tricky. There is no one test for Lupus so I sort of understand it can be a slow process. So at least that is good. And you are right, spinal taps have no place in diagnosing this anymore, that is unreliable and oldschool.

Many cases are negative in anti dsDNA (like mine) where you have to piece together other lab findings and symptoms. But some Lupus cases are positive in this test, and a positive anti dsDNA is almost conclusive for lupus. So saying there is no one test can be untrue for some but true for some.

Every Lupus case is different and I'm lucky I don't have much pain. Still it is always a troublesome illness. One has to really learn what the body can take and rather go with it than other people's demands.

Of course there is no Lupus diet that can make you well, I can eat almost anything and stay the same, minus junk food. That has to be a treat. I can actually cause episodes if I eat too much premade food. Also there is a warning not to eat too much immune boosters like kale and broccoli, but the only food totally out is alfalfa sprouts. I really don't know why, I was just told that. Also not take melatonin supplements.

But I understand everyone wants to be an expert. When I got sick my whole "healthy" family thought you always cause your illnesses. I asked in what way I caused it. They claimed I ate wrong. Thing is I ate better than them and it was a very unfair accusation! Still they think it is something you bring onto yourself and now you live with it.

I also got it after a severe viral infection. It's just bad luck mixed with genes for a strong immune system. Nothing you could affect or cause.

There will always be people who's aunt had Lupus and you will hear all about her Lupus when you need to speak about yours. I'm not quite sure why this happens.

Anyway, like I said, get to know your illness as well as you can, from the inside. People think one should simply go to the doctor and get fixed, but it doesn't work like that. Just like with mental problems, this might be fine sometimes and not so fine other times. I think people are scared when they hear someone has something pretty much incurable, even if it is treatable.

Then how do they think WE feel? It's kind of rough on us also....

Stay strong. Prepare good answers for when people say "... but you look fine!"

Yeah I was positive in the anti DNA and also the test to see if you have inflammation and that other thing? lol I want to somehow obtain my test results or at least a copy of them so I can see them myself. I heard it's like 95% accurate for blood tests, and ever since telling people (which i thought would help me feel better to tell people) i keep getting told that "blood tests are vague" "you need a second opinion" blah blah blah. Like people aren't believing me? Well, I don't have the time or the energy to try to convince people that I have lupus so WHATEVER! Thanks so much for your thorough reply, jimi

No, in your case they are not vague. Statistically I think you have about 1 % chance of this not being Lupus. People are just weird sometimes.

I hope you are doing well. You are a lovely person and you deserve the best.

I understand this completely. I have some family who will absolutely not go to a medical doctor. My thoughts on this are simple. There are things outside typical medical science that help, but there is also a lot of quackery when people just can't accept reality. I have accepted that I had a real problem a long time ago. However, I do indulge these family members every so often to keep the peace. It makes them feel better at least.