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How to tell if someone has lupus
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How to tell if someone has lupus

I know someone who claims to have lupus so I'm wondering if anyone has information on everyday life and how it affects them. Does everyone with lupus have noticeable symptoms? I've read a lot of information on it and all of it seems pretty severe. She doesn't have anything from what I've read about. Just wondering and very curious. Can anyone help me understand this disorder? I have MS and it seems pretty different from that.
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Avatar_f_tn
No, not everyone who has lupus has noticeable symptoms.  Lupus can affect each person differently and affect different parts of their body.  If their lupus is mainly affecting their internal organs, there may be no outward sign of illness.

Also, lupus CAN go into remission, where the symptoms are not present, so of course, the person who has the disease would not "appear sick".

That's one of the hard things with lupus - sometimes it is a "silent" disease, meaning that it's one of those things that you may or may not 'LOOK SICK" with.  And of course, as I'm sure you already know with having MS, if you don't outwardly look like you're on death's door, some people, even some medical people, might not think you're reall sick.

By that last comment, I didn't mean anything like you were saying your friend wasn't sick, simply making a point that sometimes, unless your illness makes you really look bad or ill, it's hard for some people to really truly understand that you you ARE sick even if you look "ok".
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1678656_tn?1369237418
Thank you for replying. This person that I'm talking about has never had any signs or symptoms and I've known her for 8 years. She had a cold one time that she said was lupus related. She's known to be a big story teller so I don't know whether or not to believe what she's saying is true.

She has joint pain in her knee but her doctor says it's because of her weight. I just learned today that there are many different kinds of lupus so when the subject arises I will ask what type she has. The same is with MS, there are many different types. My form of MS isn't very noticeable to others since it effects certain nerves. I don't complain much so people don't really know that anything is wrong with me.

She also, all of a sudden, is "allergic" to apple juice and the newest "allergy" is milk...all supposedly from lupus. I also read that it affects women more during their period or pregnancy. She had a hysterectomy about 6 years ago, so that shouldn't be a problem with her either.

I just want to learn more about it so if she does have it, i understand what she's going through, and if she doesn't, I can call her out on it. ;) I never heard of this before I met her and every time I look it up I learn more.

Just like I never really heard of MS until I started having neurological symptoms.

Are there medications that are typical to this disorder? She says prednisone is what she uses to treat lupus at times. It's also what I take to treat my vision problems and eye pain from pressure. My daughter also takes it when she has an allergic reaction from bug bites to reduce the inflammation.
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1181178_tn?1320787061
Hi,
I totally understand where you are coming from. Some people have the personality that wouldn't be a far stretch to make up a disease as an excuse.
Unfortunately, Lupus is a HARD disease to prove either way. It is SOOOO different from person to person, depending on how hard your immune system is attacking or if you are in a remission type thing, it's just nearly impossible.
I know that for a fact, it changes and will just one day start affecting something strange and she might really be having a reaction to milk or juice. It sounds strange but I've experienced many strange things myself since I've gotten sick.
Prednisone is one of the most common steroid treatments for lupus. It's usually prescribed in small doses. It literally is prescribed for pretty much the same reason it's used with an allergic reaction.
Lupus is in a way an allergic reaction to your own body. So a mild wide spread anti-inflammatory can calm it down.
I have been on prednisone twice over the last 3 years, it didn't do much for me. A lot of people have had good results from it.
I believe the first and most common treatment is Plaquinel. That is a very slow acting long term anti-inflammatory. They use it with RA patients too. But I know with flare ups a lot of times the dr will use a steriod to try to calm the flare.

Last resort is the immunosuppressents.

The bummer is that she might say she has lupus, but really she might have a different connective tissue autoimmune disease.
You might ask her if she had a positive ANA test. Or the typical raised butterfly rash on the bridge of her nose and cheeks.

I'm still going through the diagnosis stage and doctors got stuck on thinking I had MS for a LONG time. I had probably 4 MRIs to see if there were any brain lesions. They kept saying thats what they thought I had but there just were no lesions yet. The diagnosis of autoimmune diseases- as you probably had to go through also- is very frustrating and for many people you come out 4 years later with really no answer to what you have.

When I'm just talking to people or having a flare, I refer to my disease as Lupus. Becuase it is a pretty well known disease that is the absolute closest disease to what I go through. However, my current diagnosis is Undifferenciated Connective Tissue Disease with Fibro and RA.
But my symptoms are that almost to a "T" of Lupus, just no positive ANA, which is needed for an official diagnosis of Lupus.

Honestly tho, (I don't know how progressed your MS is) but a lot of people like myself have constant every second of every day pain and joint and bone aching and the longer you deal with that the less you show it.. Even when it gets worse. I know I'm in more pain now that I was 3 years ago but I show it less. It just adds on like layers and when you have an irregular pain or issue, you might make it more of a big deal that it would have been alone. It kind of throws you over the edge for a day or so.

My boyfriend has only been with me since right before I had a 8 month remission from serious flare ups, just the constant stuff was there, and I'm in a pretty bad flare now and he thinks I'm being a whimp.
It's hard for him to realize that constant pressure your under all the time from the disease.

I'm not supporting her, I just wanted to give you a little bit of an inside look. If she is making it up, I'd like her to spend the day talking to someone who really goes through it and see if she sees how lucky she is NOT being sick. You know what I mean! MS is HORRIBLE to go through and I am so sorry that you have to deal with that. At least there are a lot of organizations making medication break throughs with MS! My ex mother in law has pretty late stage MS and she would tell me about all these new break throughs. My mothers cousin is in his early 50s and his MS was VERY BAD, he had been wheel chair ridden for years and just had a very hard time with daily life.. They did some experiemental treatment, a chip of some sort in his brain and it was like a miracle for 5+years!! He could walk and talk and function like he did 15 years ago. So there is a lot of support out there for you. :) NEVER give up!
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1678656_tn?1369237418
Thanks for this explanation. Helps me greatly! The thing with the milk and juice is that she supposedly always has been allergic...but her family NEVER knew until recently! Also, prednisone is her lupus medication, not allergy or for inflammation. I know it's not specific to lupus since I have taken it many times and I don't have lupus and my daughter has taken it and she doesn't have lupus. I know she took it but she had bronchitis or something. But her claim was not that it was for her present illness, it was for lupus. I didn't use this for MS, i used it for an inflamed nerve in my eye. (Which just so happened to be a symptom from the MS.)

She has no visible signs of any illness. No rash on her face or hands as I have seen in others with lupus. Although, I have read that some people don't show signs if it is acute. She is claiming that dr.'s say she shouldn't have survived this long.

I know it's hard to determine what is wrong with you when you have an AID. I went through diagnosing for 6 years. However, after my 1st flare of optic neuritis, MS was mentioned. After the 2nd flare of ON it was almost positive. All of that was in the 1st 6 months of diagnosing. But, to be sure, there were MRI's and CT's and x-ray's and brain tests, eye test, etc... She has supposedly had this all her life, and again, none of her family knew until about 7 years ago when I met her. Still having no signs 7 years later!

My daily life with MS is different from day to day. I take daily medication that helps with the pain and other issues that I may have. The meds help to get my brain cells to repair and act as they're supposed to. I've been off of my meds for 2 months now because of insurance issues and there is an obvious difference..to me. Most cannot see what I go through, they only know what I say...however, I can prove what I have! (She cannot as of yet.)

I know others that have MS and go through a lot worse than I do. I'm 27 and was 21 when I started showing signs. Although, I've had migraines all my life which may have been a sign all along and just not enough to know there was anything wrong. Went from dr. to dr. to try to see why I had migraines and nothing...no MRI either! The 1st MRI of my cervical spine showed definite lesions and it was very clear with everything I had been experiencing.

A lot of the symptoms I had could also be explained away. I was pregnant when I had a lot of nerve issues in my lower back and legs...well, there was a 7lb baby weighing on my spine, why wouldn't I think that's what was wrong with me?! LOL. Most people that know me, don't know that there is anything wrong with me. I don't like the pitty so I generally don't tell people. If you're around me enough, however, you'll know. Can't hide everything ALL the time!

She stated she needed a bone marrow transplant or something of that nature having to do with the bone marrow in her shin because of "her lupus". She also stated today that she was having chest pains and needed to take a nitrous instead of going to the ER. OK...If I have a disease like this (or even with MS) and I have severe chest pains and need help, better believe I'm taking an ambulance to the ER especially how far she lives from a hospital! Just saying...

I'm trying to find a way to approach the subject with her without being insensitive (in case this is the 1st time she was ever honest with anyone!) But I want her to know that I know what I'm talking about. My mom is a nurse so I have learned a lot about general things just growing up with her profession. Also, a lot of medical history in my life, my kids lives, and other family. So I'm pretty well rounded except I know little about Lupus!

Good disease to say you have if you don't want anyone to know you're not being honest! I have learned a lot about it and if nothing else, I'm glad I have knowledge of it in the event I end up knowing someone with it! I try to teach as many people who will listen to me about MS. I still am learning about that as well! I don't see it as being doomed or any such thing. I take it in stride (some days better than others) and try to educate myself and others. Knowledge is everything!

Thank you so much for sharing what you go through and what you know with me! I truly appreciate you taking the time to educate me! Take care!!!
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1181178_tn?1320787061
She has some wild "stories" going. From what you say now, it definately sounds like a fairytale.
Bummer, I hate that something I so wish wasn't happening to me, someone is pretending it is happening to them. It's very sad.
I think she needs to do some research herself.

I'm glad that your daughter does not have to go through this and wish you the best of luck!
Thank you for sharing with everyone. If you have any questions about anything I have done SO much research on a lot of diseases since getting sick. I do know a lot about Lyme disease which is also one of those that is so different from person to person but is fairly well known and mysterous in the same breath.
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666513_tn?1256921055

Well, I'm not sure that its all that easy to tell if someone has Lupus or not just by looking at them.

As for myself, I had all sorts of symptoms when it first started. It was like some new and bizarre symptom every two weeks. Initially I thought I had MS (that didn't explain the joint pains or gastrointestinal issues, but I just thought they were caused by something else).

Initial symptoms I had were being dizzy, bouts of vertigo, eye-pain, muscle spasms, muscle weakness, unsteady gait, cognitive problems (memory, lost time, mild paranoia), a patch on my leg that felt ice-cold (not to the touch, but I'd swear there was an ice-pack on my leg... and it was a particular rectangle shape and size), neuopathic pain in hands and feet, numb areas on my arm, Chest pain, shortness of breath, 8 or so lesions on the brain... etc, etc., etc.

There's a category of Lupus called Neuropsych Lupus, that deals with a lot of these symptoms.

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Avatar_f_tn
My rash is not raised, but its there almost constantly.  I can almost cover it with make up also.  You should go to www.lupus.org to read the different ways Lupus can affect different people.  People with Lupus do experience chest pain.  And sometimes its not the heart, but the lining around the heart.  If you are aware what it is, you may not run to the ER with the chest pain.  I am also on Prednisone.  It is used to treat the inflammation that was making my entire body ache constantly.  And I recently started Plaquenil as well as otc viatmins my Dr recommended and B12 injections.
From what I understand, it affects everyone differently (I am new to the disease) and every flare will bring some new (oh joy).  To look at me you may think I am perfectly healthy.  But I am exhausted ALL the time (I am in a flare too) and my body aches, my lymph nodes are swollen and Im uncomfortable.  I am not defending her, as I do not know her.  But sometimes it is hard to look at someone and determine if they are sick.  I did not know severe depression causes pain until I read it recently.   And you can not look at someone and tell they are depressed or in pain.
Then there are those people who like to boast about diseases they do not have, or someone they know has it, or they just like the attention they get.  But it does not hurt us to educate ourselves.  So check out the website and it has lots of interesting information on it.
Good luck in your search and with you MS.
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Avatar_n_tn
yeah,I totally agree.my own family has got me fakin it,even after I gained 50 pounds in 3 months..and I used to be a trainer!like I want to be on these stinkin drugs!since been off the lyrica-now on plaquenil as my ana is still positive,all the symptoms including anemic,b12 injections,vitd,hypothyroid...and my siser has lupus!!you reaaly lose alot of friends,or so called friends..cuz Im fakin it of course!!Im actually on cpap machine too.thats very sexy...but I really cant resist it...cuz Im fakin it .I can put lotsa makeup on ,when I feel half decent,and I look normal.But Ill tell ya,Im far from normal.It *****.
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Avatar_f_tn
I just try not to judge people when they say they are sick simply because you never know.  There are a lot of none visable forms of illness.  I promise I would give anything not to be "faking" this.  Man it is horrible.  And if I lose friends, then hey, they were never friends to begin with.  Just shows you who your real ones are.  I am lucky, my family and boyfriend have been very supportive of me so far.  He does not judge me and he tries to help me out as much as possible.  But he also has bad arthritis and knows what it is like to be in pain and no one understand why you are complaining.  I guess that really helped me where he is concerned.  And my sister is a very bad diabetic and she knows how it is, so she understands.  I am counting my blessings on that much.  Hope you feel better soon.  And try to stop faking so much lol.
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Avatar_n_tn
ya,Ill try.went to rhumies yesterday.Apparently my tests back in sept came back that my ana was negative.She says possibly from the plaquenil and that watever  "it"is is in remission or something possibly.Thats the first time it went negative in almost 4 years.And she decided that she wasnt doing any bloodtests yesterday..and she will se me in 7 months!!couldnt believe it.wat a stinkin system.maybe its positive now-maybe not but wouldnt ya check everything if you only see me twice a year?!sorry for yellin...Im soooooo tired of this...my pain spec. thinks I have lupus says she cant treat it,endocrinologist thinks its lupus asks why she hasnt diagnosed me yet..so wat am i supposed to do?so sick of it-
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Avatar_f_tn
Try to find another rheumatologist.  I would.  Just get your PC to refer you for a second opinion at another Rheumy and have them release all of your medical files so they can see what your test results, symptoms, issues have been.  I would because I do not play with these Drs.  I konw they are the professionals and all, but sometimes they are wrong.  Hope it all works out for you soon.  Feel better.
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Avatar_n_tn
hey thanks...for your response and Ill try to see what I can do.Im in canada so its hard to get an appt at all.thanks again.
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1678656_tn?1369237418
Thank you all for your comments. I'm sorry if I offended anyone who is truly going through this illness. I have done quite a bit of research on it. Enough to know that I do not wish this on anyone. I just hate that there are people, like this person I know, who make up elaborate stories to get people to feel sorry for her. She says she was diagnosed at 17 and she is now almost 40. Wouldn't you be able to see some symptom by this time??? She is just now applying for social security, get this, for arthritis! Wouldn't you, 20 years ago maybe, have applied for it for having lupus??? Seems lupus is far worse than just arthritis. She claims that there is no way for her to prove the meds she is on or her diagnosis. She says she went to the ER for chest pains on a wednesday early morning and all the while I'm watching her post things on facebook, and not about her chest pains. She says on a friday that she was in the ER wednesday and "officially" had a heart attack. Upon talking with her mother (who she lives with, with her husband and 4 children), she says that this girl had a "mock" heart attack and it was so bad she ALMOST had to go to the ER. At this point, I think it's pretty safe to say she is not suffering from this. I know what it is like to have an illness that no one can see. After almost a year, my sister just found out that I had MS. She knew for the past several years that I was going through a lot of stuff but I guess my diagnosis never came up in our conversations. I'm not the type of person to brag about an illness either. I try to not show people that I feel bad. I'd rather deal with it than have sympathy from others. I apologize to all of you who are dealing with this everyday to have someone like her fake this like it's a joke. I wish all of you the best. Thank you all for helping me to better understand what this is and how it affects "real" people.
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Avatar_f_tn
Why don't you just let it go. If she wants to make up her illness (as sick as it is) that is up to her.  I suffer from Lupus (was diagnosed in 2006 after suffering various symptoms for over 8 years). I am in constant pain, some days worse than others. I am on plaquenil. At the moment I am sure I am a little depressed, but not enough to warrant medication. I am now overweight as I can't move around too much. Yet to people who don't know me from the past would say that I look quite normal. I always try to smile and put on a brave face. So please stop focussing on this other person. Let her be. You are not the one to judge her or "try and call her out". Just focus on your own illness and try to be happy. God Bless
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Avatar_f_tn
Why don't you just let it go. If she wants to make up her illness (as sick as it is) that is up to her.  I suffer from Lupus (was diagnosed in 2006 after suffering various symptoms for over 8 years). I am in constant pain, some days worse than others. I am on plaquenil. At the moment I am sure I am a little depressed, but not enough to warrant medication. I am now overweight as I can't move around too much. Yet to people who don't know me from the past would say that I look quite normal. I always try to smile and put on a brave face. So please stop focussing on this other person. Let her be. You are not the one to judge her or "try and call her out". Just focus on your own illness and try to be happy. God Bless
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Avatar_m_tn
Sometimes symptoms are not visible or even understandable to the person who has them. I'm not saying your friend definitely has it or definitely doesn't. I was just diagnosed with Lupus and Sjogrens syndrome very recently and since then I have done my research. I am a nursing student and knew very little about Lupus. I had very strange symptoms that no one would ever see from the outside. Chonic pain and neuropathy, vision problems, fatigue, depression, trouble getting out of bed because of stiff joints, frequent colds, sensitive skin and hair loss. I thought it was all stress. Finally brought it up to my doc and she tested me for a bunch of rhematic and connective tissues disease, and there is was - Lupus and Sjogrens. All tests for them were positive and consistent with my symptoms. My rheumy said I have probably had these diseases for years and had no idea. To the outside world I looked fine. No one would have guessed. But the way I was feeling was very sick and looking back, very much Lupus. In my case it really wasn't hard to diagnose because it was all there in the labwork and symptoms but often it can be hard to diagnose, and hard to understand. All I'm saying is, yes she could be making it all up, but I've gotten the whole "you look fine" and "you're not sick" comments, until it all took a toll on me and I lost weight and started looking sick. It's gotta hurt when people don't believe you're sick...
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