By - Lucky_Fox_6744
My main are fatigue and pain. That's common. Also the butterfly rash.
Chronic infections. I'll get an ear infection or UTI or whatnot, just like a normal person, but it will persist for months or sometimes years. The same with the flu.
Absolutely horrid pregnancies. I was hospitalized multiple times each time. Had to get fixed because I can't survive another. Symptoms were intense vomiting (several veins in my face burst), chronic heart failure, pulmonary edema and seizures. The seizures are not always associated with a pregnancy, but they are definitely hormone related. If you are a man you might not pick up on that, but mine were always close to my menstrual cycle or during a pregnancy. If I'm not pregnant I will get maybe 2 a year, but pregnant they are several times a week.
Terrible teeth despite excellent dental care on my part.
What I like to call princess and the pea syndrome. I'm the first one to get sick, I have it the worst and I have it the longest. I am the most sensitive to food, chemicals, temperature change, sun. I'm essentially just really high maintenance in every facet. It sucks.
Yes! In the winter, I have a cold that literally lasts 3 months. I never brought it up before because it's been like that my whole life so it was normal to me. Also if my family also happens to be sick, it's three days of the sniffles while I have weeks of congestion, a cough, and a sore throat so bad I can only drink liquids.
I also suffered a lot as a kid with things like hand foot and mouth, 5ths disease, bronchitis, and the flu. And when I got the chickenpox, apparently it was so bad I had them in my mouth and throat. I was diagnosed at 3 years old with an autoimmune disease so it definitely makes sense why I had so many health issues even then.
Omg I got so many ear infections as a kid I couldn’t even tell you how many. Also, I normally did okay with stomach flus, but when my symptoms started popping up, I once got the flu and I kid you not I thought I was going to die. I am famous for appearing fine all the time but I seriously was laying on the chairs of my doctors office as a grown adult half delusional. That and tons of lung infections, and the two stupid ear infections as an adult? Like wth how.
omg sameeee, i’m not diagnosed yet but i was constantly sick as a child and honestly up until college..i always had ear infections and they were awful. I distinctly remember one that ended me in the ER in the middle of the night because I was sobbing in pain. I had severe and frequent throat infections (like strep) and had to have my tonsils removed. My junior year of high school I got strep, flu, and then a stomach flu back to back. I was out for a month and one of my teachers asked the class if I was terminally ill😭
I'm so sorry.
I had a lot of health issues as a child. My siblings always called me sickly and weird. But the strangest thing I’ve developed recently was severe sun sensitivity and breaking out with round itchy patches on my face, neck & chest after a few minutes in under the sun & heat.
I didn’t know that dental issues were related to lupus until I found out all my teeth are fucked :,)
What dental issues did you experience? I all of a sudden couldn’t eat spicy foods. It burns my gums to death! I’m so sad :( and I’m wondering is it related.
Yes spicy foods I no longer enjoy its complete torture. Not only my gums but my whole mouth. It’s like my mouth is raw or burned and anything with spice can irritate it.
Pretty much all of my teeth are cavities - I’m very thankful I can still eat spicy food though cus it’s my favorite
It’s like your last paragraph is my biography.
That's absolutely autoimmune. Your body is misinterpreting everyday obstacles as life threatening.
Don’t I know it. Lupus/RA/Sjögrens. It just makes sense of all the times I got deathly sick from the common cold when everyone else was just a little miserable. I was *always* the sickest when I was younger. My parents thought I was just whiny.
GERD. That's the big one. I thought it was unrelated, but the more tests my GI doctors do, the more it looks like it is related to my lupus. That's also related to my other GI symptoms, burping, bloating, etc. All likely symptoms of my autoimmune disorder and I wish they had told me how common it was when I was first diagnosed.
I don't really have GERD, just occasional normal heartburn. But I do get seriously ill if i have dairy, and frequently get nauseous, sometimes to the point of throwing up, for no apparent reason. Random stomach pains is also a regular occurrence, as well as bloating. I also notice that boxed brownies really bother my stomach for some reason
Ugh the nausea is so SO annoying to me. Like why body. Why are you doing that? No one said you should be doing that right now.
Yes! I am bringing this up at my appointment thursday. I am so bloated and am constantly burping/ vomiting in mouth. I NEVER have had issues with food until my symptoms of sudden and severe joint pain and swelling.
Do your burps ever smell like sulfur? I’ve had sulfur smelling burps for years, but no one has ever really thought anything of it when I’ve brought it up to my specialists. Just curious if anyone else has it. I also have GERD, horrible heartburn, indigestion, bloating like no one’s business, and bad dysphasia. Though to be fair, I’m being screened for esophageal cancer. While I wait for the results though, I’m wondering if it all could be more lupus related. I’ve also been vomiting nearly daily for the past two months.
Sorry for throwing so much at you, it’s just that I saw everyone writing about symptoms that I also have and I’m really hoping it’s all just my lupus and not that I have cancer.
No, my burps taste like vomit. Mind you I have not been diagnosed w/ lupus BUT it was a concern my Dr brought up and my Rheum just did a more specific panel catered to it. My symptoms definitely resemble lupus. My Rheum just told me he doesn’t think my condition is arthritic, he seemed kind of puzzled? My range of motion is great, but I still have inflammation and polyarthritis.
Yay, more to look forward to!
Sincerely hope you're one of the lucky ones spared the GI issues!
Thank you. ❤️ I definitely have my own list.
Ugh I end up taking famotidine 2x day now. It’s awful if I don’t
Random muscle spasms that last for minutes/hours.
No particular place, just like "Hi, I'm an odd muscle in your hand/leg/back etc and I will now spasm until you want to cut me off. Thank you!"
Stomach issues which I always thought were stress related.
Migraines that lasted for days.
Im similar to you, I've always gotten random spasms in the right side of my body. I also get super nauseous in the mornings, to the point of vomiting. I get migraines occasionally but I usually get aura too so I can generally nap before the actual pain starts.
Oh my gosh! The past week I have been waking up with the worst Charly horses I have ever had in my life. I actually woke up screaming one of the nights, and it took forever for me to massage it out. I thought it was from dehydration or something but I wonder if it's just a new symptom. :/
Phantom smells! Lupus affects my brain so that I sometimes smell cigarette smoke, mold, bread, or other smells. It can last for several days sometimes. I also seem to have trouble fighting fungus - I have to use Ketoconazole shampoo. Also, I agree with you about the constant nausea and G.I. issues. I have those as well.
Here’s one for your list - hoarse voice/loss of voice. When I am flaring, my vocal cords become inflamed. It doesn’t hurt, but sounds like it should. A lot of times, this is the first signi get going into a flare. Lots of fun, especially if you work in a customer service position.
Wait, what?! Are you serious?
This started happening to me in the last couple months and I’ve been wondering what the hell is up because it doesn’t hurt and I’m not sick with any kind of bug.
The hoarse voice without any pain happens to me too, when I’m in a flare and also when I’m overworked or under extreme stress.
I have a lot signs & symptoms but I’d say the oddest one that I didn’t realize was a symptom until years later was sneezing. I’m infamously known to friends, family, coworkers, classmates, etc for my sneezing fits. I’ll sneeze 5-10 times back to back multiple times throughout the day (probably average a good ~50 sneezes/day). I always just thought it was normal/a weird body quirk until it occurred to me to research it and it’s relationship to SLE & sure enough it can be a symptom (uncommon though)
Very interesting! I also sneeze a lot but I'm allergic to most living plants and animals so there's probably not a correlation between the two. I do notice that I'll get really bad allergy symptoms that don't go away with allerga or a Benadryl. I think I remember seeing a post someplace here that someone else had a similar issue and had yet to find out if it was due to an autoimmune disease or just really bad allergies
I'm the same way. I've always had really bad allergies and thought I was going to die when they did the scratch test on me when I was younger. Are you chronically congested?
Wtf I do this too and never even thought about it being related. I do have a ton of allergies though.
I’m no doctor but increasingly research has suggested a strong connection between the GI and autoimmune diseases. Gut permeability leads to food wastes leaking into the body/endotoxemia — and thus our overzealous immune reaction to it.
It’s quite possible that your gut issues are one of the causes of your autoimmune. I know for me that it’s the case.
I agree! There is so much research to support this… I’ve wondered why more drs don’t mention it to their patients. Many functional med drs start there with treatment… 🤷🏻♀️ I think it is certainly worth adding to treatment. I’ve don’t the AIP diet for years and I’ve found it very helpful. Still picking a plan to try/follow with the whole gut thing. That’s what actually got me here to Reddit- I was looking for people with experience trying the whole Dr. Goldner thing.
Yes! I was befuddled after my last appointment with a new rheumatologist who, after hearing about my resurgence of symptoms, merely suggested to add on benlysta (a weekly self administered injection that burns like hell). I was stunned, like really that’s the best we can come up with? No mention of diet, stress, any other contributing factors.
I’m nearly certain my lupus is caused by gut issues as right before my diagnosis I had the worst SIBO/GI issues of my life.
I’m happy to hear you’re also working on the GUT. The more I read the more I realize what a tangled web it is — cleaning the bad bacteria out, fortifying the gut wall, supporting the good bacteria…so many things. Have you tried any supplementation with oregano oil? I’ve been hearing good things from Candibactin AR also.
Cold urticaria - being allergic to cold. I get big puffy, itchy hives when exposed to cold. My doctors always said “huh, that’s weird” until I was diagnosed.
Also eosinophilic esophagitis - my body attacking my esophagus after eating certain foods. It has sent me to the emergency room a few times.
This makes so much sense! I don't have it it any longer, but for a while when I went from hot temps (like outside in the summer or in a heated building) to cold temps, I broke out in hives!! My doctor literally said "that's interesting" and told me it was most likely allergies. It hasn't happened in a long time but I'll mention it at my appointment.
I also notice that if I'm caught outside in the cold unprepared, like for example, I went to a concert over the weekend and it got colder than I expected, I feel sick after. I get really tired, body achs, chills, and a stuffy nose.
Being the sweatiest person in the world. I soaked my sheets with sweat every night for a year before I was diagnosed. As soon as I had been on hydroxychloroquine for about three months that stopped. No more excessive sweating. I’m petite and thin so I everyone was always bewildered how I could produce that much sweat.
No appetite. No sense of smell. I was diagnosed in April of 2021. My symptoms started to worsen around March 2020. Literally no one believed me when I told them I lost my sense of taste and smell. They believed I had Covid hysteria. Even my pharmacist hung up on me when I called to ask if any of my meds might cause that. Once diagnosed my rheumatologist told me it was a rarer but not uncommon symptom of lupus. I also lost about 25 lbs in a year while eating like an eight year old at a slumber party. I cannot gain weight. That tends to annoy everyone. Especially those with lupus. They make jokes that are not appreciated or helpful so I just lie and say I’ve been working out.
My growing pains weren’t actually growing pains.
Dizziness, an room swaying was not me just getting too hungry.
Tunnel vision isn’t normal, and I just learned that.
My high heart rate of 140-170 was not anxiety.
Thankfully, and I am so undeniably thankful for this amazing rheumatologist and my pcp. They worked in the same building and actually saved my life.
I was telling my rheumatologist about all my weird symptoms that I DID NOT tell him I was having because I was scared that you wouldn’t believe me. And he said “I understand that, but you can’t anxiety your way up to a double stranded dna of 18,000 (or 80,000 I can’t remember).
I had this man so scared about what was going on,
That when he first saw those labs, he called me himself at 7 am and told me to come in immediately. Didn’t want me to work for a week.
I am sending him a Christmas card.
Y’all, when I tell you this, tell your doctor everything.
You never know if it is or isn’t a symptom. This is your first appointment, I advise you to get your most recent labs printed and ready for him to look at, a list of all of your symptoms (it really helps to have them timelines if you can).
Thanks so much! This was really helpful. After reading everything here, I realized that I have so many things that I just over looked and assumed everyone else struggled with as well, mostly because I've been dealing with it my whole life and it was normal for me. As I've gotten older, I've gotten better at realizing that no, begin sick for several months in a row isn't normal. Daily joint pain isn't normal, and feeling tired and groggy all the time isn't normal.
No it’s not normal. And never, ever let a doctor convince you otherwise.
Also wanted to add, I was officially diagnosed at the age of 3, but my mom was told I'd grow out of it (surprise surprise I didn't) but what first alerted my mom something wasn't right was that I was crying in pain every night, and she was told it was just growing pains! Thank goodness she fought with my pediatrician to get blood work done and sure enough, things weren't normal. But that rhumitologist said i was too young to diagnose officially and I'd "get over it" as I got older.
Not so bash male doctor's, but every single person who dismissed my mom's concerns and my symptoms were male. Finally find a female primary care provider and rhumitologist and low and behold, I'm actually being listened too.
It’s a male doctor thing?? It really is.
Although, I have quite a few amazing male doctors. A few that actually saved my life because they listened.
Literally everything. I have always suffered from *things* but never knew they were connected until my diagnosis. I suspected lupus for years but never thought much of it until the sun sensitivity started.
High risk pregnancies with no known cause. Neuropathy toe/foot pain with also no cause. Chest pain through college with also no known cause. Basically any thing new led me down rabbit holes and zero answers.
I've had a malar rash since I was a young teen. Not one doctor in twenty years even mentioned lupus. The last straw was joint pain that mimicked carpal tunnel. Spent a year and thousands of dollars on that goose chase.
I needed to look holistically. And now that I have and got a good rheumy, I have answers.
what others already said - pretty much all kinds of most random illnesses/symptoms, and since I was a kid
My nails detaching from the nail bed on my fingers and toes 🙃
YES! This happens to me too and I’ve never seen anyone else’s nails do that. Of course that’s a symptom… have you talked to a doctor about it?
Ugh! It’s the worst! I did mention it and he said yeah that can happen because it is a connective tissue disease. They can actually test your nail beds for lupus if they are having a hard time with other markers. My blood work and butterfly rash is a “slam dunk for lupus” as I have been told so no need, but they definitely can test the nail beds.
Have you found anything that helps? I have a steroid cream that helps a bit with the inflamed nail beds but I don’t really know what to do about the actual nail
My nail beds don’t get inflamed, at least not that I notice. It doesn’t hurt. It just feels funny if they detach far back from the edge of my nail. Like, mine I can stick a piece of paper under my nail and it won’t hit anything until half way in.
Anywho. I do my own gel manicures. I keep my nails longish. And for some reason longer nails work for me better than short. Long as in just past my fingertips. And longer nails combined with the manicure seemed to have helped a lot. Most are attached back. I do them pretty religiously every 2-3 weeks and keep them very moisturized. I still have a couple that detach but it ebbs and flows.
I'm not diagnosed yet, in the process of pulling lab work, talking to PCP and finding a rheumatologist just in case.
Reading all these comments has me flabbergasted😳. My whole life might finally make sense!! I've been fighting with docs off and on since I was 30, now 46, for a reason/cause of my symptoms. I should have looked deeper into lupus but I didn't have joint pain or positive ana back then, it was only checked once in the very beginning of my search. I've been sickly my whole life but what I've been dealing with since 30 is bonkers!
I can relate to all of this!! Except the sneezing thing lol, I don't have that. I feel like I just opened a door and everyone yelled "Norm" and the Cheers theme started playing lol. I'm blown away at how all my symptoms might finally have answers.
I think I'll pull up a stool at the end of the bar and stay awhile😁
Oh my god, so many symptoms. But the last few years have really been a process of discovering all the things that are wrong with me LOL.
Lupus is just the newest one to tie it altogether in a messed up little bow!
Totally agree!! I was diagnosed at 3 years old, but no one helped me because they said I would just grow out of it. Now that I'm older, things just get worse and when a new symptom pops up I'm like "well that's an interesting one" *gets out 500 page list of symptoms and writes it down* 😂
A new rash every week, chronic UTIs and GERD😩