The Expert Series S6E1: Invisible Symptoms of Lupus

Dr. Cynthia Aranow explains the impact of invisible symptoms in this episode of The Expert Series, a podcast from the Lupus Foundation of America. Learn the difference between a sign and symptom and how to discuss this topic with your health care team and loved ones.
Summary
* 1:55 - What’s the difference between a sign and a symptom?
* 4:20 - Can invisible symptoms also have a mental impact?
* 6:12 - What are some ways that people with Lupus can effectively communicate their symptoms to their doctors?
* 7:34 - What are some of the Invisible Symptoms?
* 8:56 - How can caregivers, friends and family members support people with lupus who are already experiencing these invisible symptoms?
* 10:20 - Advice for people with Lupus to cope with their physical and mental symptoms.
Review these resources to learn more about this topic:
* www.lupus.org/resources/under...
* www.lupus.org/resources/ten-t...
* www.lupus.org/resources/learn...
* www.lupus.org/resources/finan...

[@ritalewis2790]

I have Lupus SLE and what makes me upset is when people say Oh YOU DONT LOOK SICK I WOULD NOT WISH THIS DISEASE ON ANYONE

[@nikicarrie4071]

❤

[@ladeek35]

Right?! So invalidating for you. We should write a list of the most gas lighting invalidating BS responses we’ve all endured. I’m sure it would be a doozy.

[@debraashe8557]

Just Say. Thank you

[@debraashe8557]

Thanks

[@brandi_whine]

Autoimmune disease is the worst thing ever!! I was dx with MS and so many of those people that called me a hypochondriac finally apologized 😢🤔

[@carolynbraunius1914]

When I was trying to get diagnosed for terrible headaches and chronic fatigue, I had a doctor tell me I might be bipolar. Luckily I doubted him

[@mariawhite2760]

Omg ,did you go back and tell him💖🙏🏼

[@ladeek35]

Lucky for you, you used your own common sense and intuition. Good on you. Best wishes.

[@sl4983]

Report him for misdiagnosis

[@cassthompson6168]

Some of these doctors are crazy!! When my feet and fingers was swollen I went to my doctor, he told me nothing is wrong with me, he said maybe I'm allergic to my man😔 so I went to another doctor , he ran some blood test and I was diagnosed with rheumatoid arthritis.. then further on i was seen by another doctor, she told me it's not rheumatoid arthritis it's lupus...

[@basetsanamokoka5462]

I was lucky that my psychiatrist is well informed and on the ball. He actually is the one who helped with my diagnosis.

[@juanitaarrington3209]

Wow I am so glad I saw this! I was diagnosed with lupus a little over 2 months ago! I was always tired, dizzy, my body felt like I was run over by a truck! My arthritis was so bad in all my joints, I would be exhausted walking to the mailbox! I got this crazy breakout on my face cheeks and chin. I went to my new doctor and described my symptoms and ordered a blood test for everything! I go back to him and he looks at my paperwork and goes whoa!!! I didn't expect this and I asked what? He said you have lupus! I cried to the point I had to walk away and get myself together! I was so upset but I was relieved that I had an answer to my questions and a reason why I feel so bad! I'm dealing with it. I'm taking it day by day. I didn't think I would get this because only 1 person in my entire family has it which is my niece. I watched her suffer all her life! I wouldn't wish that on anyone. I never thought at 46 I would get this. I don't even have the energy to go out with my family because of the pain.

[@Virginia_Gurlie]

I turn 59 this coming Sunday June 25th..I was just diagnosed about 2 months ago. This disease knows no age

[@Hazeleyesx2]

Same can’t go to mailbox without feeling terrible 50 at diagnosis

[@MariaReyes-vy6ue]

It took a stroke for a dr to realize I had lupus this was at the er, all my drs treated me for something else, even one said I had to lose weight, I was 37, but I had all the symptoms since around 18

[@juanitaarrington3209]

I was scared for my life! I originally weighed 249 pounds at my highest weight. I got down to 168 pounds in a little over a month! I just knew I was dying! I insisted on getting life insurance in case I died. I started making peace with all my siblings and planning my funeral! Having lupus is sure helllll!

[@lauralupusandsupport5802]

Sometimes it takes several visits to numerous doctors before you receive an accurate diagnosis. Stay encouraged!

[@lauralupusandsupport5802]

This topic is not discussed very often. I'm so glad that you were able to shine some light on this ongoing issue. Lupus patients must continue to advocate for themselves...keep talking until someone hears us and understands us!!

[@RichardDestaffino-ed9oe]

I took the vaccine COVID Moderns in 2021 after my second vaccine on the 3rd day I couldn't get out of bed because I woke up crippled and severe pain in both wrist and my knee was crippled and and rash under both arms face sides and arm pits after the doctor took several blood test like 14 it seems like it but was told by at least 5 doctors that COVID vaccine did this because of my blood being RH negative blood and I was told auto immune disease I'm on mental health meds and printisone hydrochride Zoloft I think it's wrong that they never said nothing to me about my blood RH negative would trigger me to get this because of the vaccine

[@lauralupusandsupport5802]

@@RichardDestaffino-ed9oe that's true! Someone should have mentioned that risk

[@denisekackley-ou4uo]

The Covid vax has caused many autoimmune issues. My 23 yo granddaughter is going to have to apply for disability r/t the damn vax!

[@mariawhite2760]

Wow and there I was thinking I was becoming lazy, tho I know years ago I was anything but ,had loads of energy,I'm 55 and had lupus since I was 32, everything is always ok with my blood,but I feel tired for no reason ,weak,achy like flu ,I have good days ,but my anxiety is through the roof ,I don't go out hardly, everyone thinks your making it up ,unless your in bed 🤷🏻‍♀️dying,I really don't think they get it ,thankyou so much for bringing this up I have sle 🙏🏼🌷

[@denisekackley-ou4uo]

I hope you see this post. I’m the same way. My lab work has been great these past 6 mon but I have so much pain, headaches, etc. Lupus is a dreadful disease

[@mariawhite2760]

@@denisekackley-ou4uo I have finally seen your post ,thankyou ,I'm glad your bloods are better,I'm wondering if my case has something to do with my blood group rhesus negative, let me know how you are ,I'm due to have bloods again 💕🙏🏼🧐

[@rubiesofgold7698]

My late Great Grandmother was called lazy by other family members. However, there was a time she was a nurse and owned her own hotel (During a time when not that many women worked). I’ve been diagnosed with autoimmune issues for about 14 years now. Before that, I was a workhorse, type A, getting tons of stuff done. Now I’m convinced my Great Grandmother had an undiagnosed autoimmune issue.

[@mariawhite2760]

@@rubiesofgold7698 Oh bless ,so much that now makes sense,we didn't know about years ago 🙏🏼❤️

[@alisonbear7114]

If asked how I'm doing, I lie and say I'm doing well, thanks. I have been living with this disease for over 10 years now. Most people don't want to hear you aren't doing well, every time they ask. I make it easy for them.

[@maritadenil6774]

❤

[@jennyjeepjeep]

Oh my God this hit home with me I struggled really hard to get my doctors to listen to me And after 6 years of struggling after I changed doctors and healthcare providers I finally got the diagnosis and it validated me Because I was thinking that what the h*** am I crazy am I a hypochandrea I knew better and the validation was a very liberating and crucial moment in my life.

[@laurawilliams5357]

I'm going through what your talking about right now. No one listen to me 😪

[@giagia45]

Thanks for video and second thank you. I have heard the same. I m in the street for diagnosis. Even doctor don't believe. I say to myself may be crazy?... I still hope... All the best for you.

[@tracysmith245]

the only reason I get upset is when no one thinks or understands what it is

[@VickiCassada-gt3jm]

Hi, my name is Vicki . I was finally diagnosed with lupus when I was 65. I have another autoimmune disease, Hashimoto's thyroiditis .I have had for years. I have been feeling worse for the last 10 years. Went 2 different Rematologist. And told me just Arthritis.i was hurting from the neck down.just blew me off my endocrinologist. Suggested I see someone else. Because of my AnA and Dsdna Positive .high titer. So I did, and she did Thorough examine and more labs and told me I had lupus. I was floored. I didn't want to believe it. I thought I was too old. And then I was told by her and my cardiologist and my Is rheumatologist an endocrinologist. That anyone could get it. The one thing I have learned is that it can take years to get a Diagnosis.😢

[@deborahboucha9375]

Very good info. I began my first symptoms at age 18. After a 20 year struggle I finally received the lupus and S., syndrome. Now at age 71 when I see and read medical information this is great for all those younger women and men who need as much information as possible. Most important early on “trust one’s own feelings when searching for the the medical answers!

[@nikicarrie4071]

I'm sorry you had to deal with that

[@juanitaarrington3209]

Absolutely! I weighed 257 pounds then within a little over a month I dropped to 168 pounds! I looked like a skeleton and I remember my son hugging me and saying wow mama you are so tiny! All I could do was cry because I didn't know what was wrong and doctors didn't know either or what to do. My grown 26 year old son started crying while hugging me!

[@beckylipps7286]

My daughter, 50 years old, won't even talk to me about my recent diagnosis. I don't think she thinks it can't be a serious illness. I get no help and I'm so very tired. To tired to power clean my apt. I get angry. I'm an independent 74 year old lady. I need to talk about it with her. I'm scared.

[@lauralupusandsupport5802]

I think that individual and collective efforts to keep lupus awareness and research at the forefront is very important!!💜💜💜

[@bekkibuenviaje9680]

I have learned over the years to take a break when I need it. It doesn’t matter what other people think about it. People are just going to think what they want. I don’t need to explain myself. I know the consequences of not listening to my body. After 25 years of dealing with lupus, I have had enough experience with “pushing myself” to know better. I’ve learned when to tell doctors off too so idk I’m jaded and probably just becoming some cranky old lady

[@ivy2nd]

I know how it feels, I even asked my therapist if it could be my mind making this up. she told me that i have the labs the prove that i have that condition so im not making it up.

[@SuperRainbowQueen]

I Thought these feelings were all in my head..Thank you so much..also shared on my page.

[@jenniferflockton5948]

I am still struggling to get Rheumatologists to believe me,I am just on the line of having Lupus.My GP is amazing and she keeps telling them that I do have this.Positive Ana speckled ,diagnoses of Fibromyalgia and Poly Myalgia continuous mouth ulcers,profound tiredness,headaches,UTI’s,rashes,skin tingling and burning,joint pain and muscle pain.elevated inflammation.The last Rheumatologist I saw talked to me as if I was a naughty 10 year old,so condescending,I am 74 and very independent.I felt so insulted.My GP says that getting a diagnosis for Lupus here in Devon seems to be hard to get.I despair and spend many bouts of tearful sadness as they just don’t want to believe me.Nobody wants to have this diagnosis,we really don’t but I don’t understand why when it’s so obvious to everyone else.

[@ladeek35]

Dear Friend, I’m sorry about your situation. Can you get a 2nd opinion or 3rd or 4th?? from another Rheumy? You deserve to be heard and supported. We are patients and medical partners with our drs. Drs shouldn’t act like authoritarian’s treating us like children. Anyone who is not hearing you, isn’t on your team with your best interest in the forefront. I’ve kicked 4 Rheumy’s to the curb. (My case is complex and drs kept blowing me off because they didn’t know what was wrong or how to approach the case, or they didn’t want to put in the effort to do my case work up. So it makes them feel more comfortable putting the owness on me. (Or you, treating you like a child). Also, I don’t live in a big city, we drive several times a year, travel 5-6 hrs, stay in a hotel etc. just to see a Rheumatologist, Retinal Surg, GI, Neuro etc. Yeah, travel is terribly rough because I’m so ill at times, sometimes we get stuck mid -commute just to sick to continue driving. That’s when drs give me telemed on the side of the road. Dear Friend, you deserve the best care. I am meditating praying on your behalf. ❤

[@ladeek35]

Dear Friend, 1 last Last thing… my current and very good Rheumy says, a way to understand immune dysfunction or more specifically, autoimmune disease, isn’t as much about finding a name of your disease and treating you, but instead, acknowledging you have an immune dysfunction, find the location and extent of inflammation/damage and TREAT it. Apparently this approach isn’t held by every Rheumy. Peace, friend.

[@PriyankaSoni-kk6ks]

Any weight losss

[@missjust76]

I have been diagnosed with Lupus, I am not on medication yet. So glad you mentioned liver. Mine is extremely high. Doctors first said I am an alcoholic. I rarely drink. My muscles in my leg hurt so much, very slow at bending down to pick something off the floor. I get a slight earache then my check swells up which goes down to my neck. I keep going red in my face and burn up with it. I was questioning myself because everyone just mentions kidneys not liver.

[@nealmcbaggins127]

Isolated? Alone? Doubting and noone understands? Absolutely. I'm on the verge of giving up. Just on a diagnoses... I'm not throwing in the towel on life or anything. But wow, it's not easy sometimes. Especially as a man. I can't talk to anyone about it.

[@sl4983]

What this tells me is there's a lot of gaslighting abuse being perpetrated on lupus patients

[@pamelahewitt3397]

Thank You for the great information.💜💜💜💯

[@alysiaricker747]

How frustraiting for these patients. Symptoms and invisible. So doctors dismiss over mental health. 🙄 hugs to all go percerviere through symptoms and challenge doctors to listen to how you feel!! Be your own advocate!

[@marciwilliams3734]

I have Lupus and I’m in a flare right now taking 15 mg once a week of methotrexate. I am in so much pain right now. Plus I take hydroxychloroquine 400 mgs. I feel like there is no relief for me. For the pain. No doctor, besides my rheumatologist, believes I have pain. Unfortunately it’s the weekend and I can’t get a message to him. This disease really takes a mental toll on me.

[@fionaestherfortuin4185]

You have to rake tramafol wirh tylenol I take cannibis drops that has tumeric in it plus capsule when I'm bad The rash etc I'm sitting with shingles at the moment

[@bobmcdonald1892]

Check out Dr Brook Goldner. She had Lupus & now has a passion for helping others.

[@msharrison-clarkson8683]

Same for me everyone tells me how well I look I try extremely hard to look after myself but this nasty disease takes it toll.😮‍💨

[@hannahw2697]

I just recently got diagnosed but my doctors really blew me off and gave me Plaquenil. They gave me no information at all. If I didn’t have the internet, I wouldn’t even know what Lupus was. This week, I was freezing at work one day and I was so exhausted my body started to crumble. My lips turned white and blue and my Reynauds was acting up. As soon as I left work, I got a horrible rash all over my face and the sides of my neck. It was on fire and lasted for almost 4 hours. I have no way to know if this was because of Lupus, or why Lupus would cause this, and I really get the feeling that nobody at work believes me.

[@tweetyslife253]

Hi hannah, yes thatis lupus. I will be doing a bone marrow exam to see next month. I feel the same way as you and can be very tired at times.

[@elainelaw2216]

Always try to keep your temperature balanced. It's possible to get a flare if you're too hot or cold. Try to minimize exposure to direct sunlight also. These things give me terrible flare.

[@corinneobrien6196]

I hate that crumbling feeling. I get it a lot especially in my legs when walking they feel weak my knees buckle and I get dizzy. Crumbling is exactly what it feels like

[@user-mu2qy5oz7w]

Hi, Hannah, hope you feeling better. Just seen your comment, Iam suffering similar symptoms not diagnosed ( waiting reumatology appointment) my ANA antibody was positive. If you don't mind ,. But my doctor said positive ANA goes not always means Lupus. if you got diagnosed, what other tests did you had , is it Lupus and does Plaquenil helps?. Thank you.

[@hannahw2697]

@@user-mu2qy5oz7w hello! I got a new doctor since my original 3 appointments. That office gave me very little information and really and it was a very confusing experience. I have been positively diagnosed now. The Plaquenil helped tremendously but I got Covid in November and my symptoms came back. I just got labs done and they took a dip. I have to go back to my rheumatologist to find out my next steps. I started taking my temperature when I turn blue and my body temp is going in the low 95 degrees. Good luck to you. Get a new doctor if they keep telling you “it’s nothing.”

[@shellsandpetals1652]

My family acted mean after my diagnosis. 😢

[@nancycarlos5695]

I have been suffering from Lupus disease for some year without having a solution to it until i done a research on KZbin i come and cross Dr.Auchi on KZbin channel. That was were i find effective herbal medicine to cure my Lupus disease permanently without having side effect from the herbal product.. i recommend #drauchi herbal medicine for Lupus disease cure...❤️❤️❤️

[@sl4983]

Why

[@Pokedawn100]

Looking back over my own labs, I've had proteinuria, high wbcs, and a high liver function enzyme. So, I have seen that.

[@mimirose4012]

My daughter started having symptoms and signs when she was 3 1/2, and as her mom, I wasn't believed. She was treated for different medical issues except Lupus. So, she had to deal with many years of procedures and pain until she was diagnosed at 6 years old. Now, at 22 years old, she is managing, but both of us are scarred from her early years.

[@sl4983]

What symptoms did she have?

[@juliawalkerthompson5763]

Yes obe of the invisible illnesses😢

[@pata7957]

Dr.i hope you don't tell your patience that they are giving you a headache I go to a Dr. And that is what I get because of all the results that came from my lupus . I have become the complex case .This is very difficult for me to deal with I tell my Drs " I'm not asking you to handle my illness I just want you to help me handle it". but all I get is go see another Dr.

[@MoonPhaze5]

Recently, and also unfortunately, a short round of antibiotics sent my Lupus into a rage. I never expected this, and it's miserable. 😞

[@beckystrozenski5187]

They always talk about onset signs and symptoms. Why don’t they talk about migraines, pleurisy, gastroparisis and more!?!

[@sl4983]

Replies hidden

[@amandalee1242]

I’ve been battling a lot of this and I’m struggling to get any answers. Most of my issues aren’t visible to others and I don’t have everything on the list so part of me feels like a hypochondriac. I know I feel like crap every single day and more issues keep popping up.

[@Lottesettle]

I’m hearing so many similar things here😔 Can you tell me if you have ever associated GA skin/rash with lupus?

[@pamelastaton6390]

I have a question for anyone out there….when I seem to over do it, I get these mouth ulcers…usually on the sides of my tongue towards the back of my throat? I am so exhausted most of the time…I just took a shower and while in the shower, I washed down the walls…and became soooooo tired and nauseous that it took all I had to just dry off and put on underclothes before I laid down on my bed….I have major dizzy spells and balance problems and just figured it was because of my high doses of Gabapentin…I have cancer…Follicular Carcinoma…and due to treatments for that and neurological pain from bad fall, I haven’t even mentioned the mouth ulcers to my doctor…maybe I better?

[@user-uy2uv2gj6s]

My mom had all those symptoms for decades. The mouth sores, dizziness, brain fog etc. Get a Dr to help with it. I know their are some trigger foods that can cause it to flare up

[@shannonKd]

I spent over five years in bed before and then after being diagnosed. My sister said she thought i was on meth. I'm 5'9, and got down to 110lbs. I've been really sick, but instead of seeing what lupus is, (nobody in my family history has had autoimmune issues, so the multiple ones I've been dx'd with aren't understood by my family) she just assumed I'm a meth addict. It breaks my heart, but what do you do.

[@sl4983]

Sounds like people gaslight the people with symptoms

[@sl4983]

What are the symptoms

[@sl4983]

All the replies are hidden

[@theanswerisprayer]

Why are they hid?

[@sl4983]

@@theanswerisprayer not sure. Strange

[@ranshiaudit5587]

Am a patient of lupus i lose weight 20kg

[@kateskeys]

I have lupus and and scleroderma- flares can be severe - the ONLY MEDS that work 100% are 500mgs of THC edibles. Sometimes smoking weed is helpful. Edibles are a sure thing. Just thought I’d share this because doctors never will.

[@larssonmaria8090]

Hi 👋 I’ve been living with lupus 😰for more than 5years now but I got rid of it naturally after using dromo herbal medicines his KZbin channel 👉 dromocure

[@JBanks333]

📢💨 My friend just t😢ld me she has 👠upus.

[@judihart9658]

☝️not so invisible to those of us paying attention.# just sayin.😎

[@ladeek35]

Wow, that’s really true!

[@suemcqueen5594]

my doctor though i was lieing before i found out i had ra and the doc just happen to find the lupis

[@mimilookamie8019]

What a dull interview with absolutely no useful content.

[@jasanders5877]

SORRY 😔 TO DO A THUMBS DOWN I CAN'T BELIEVE THAT YOU TWO DON'T SHOW YOUR FACES, IT'S MUCH MORE BELIEVABLE, TO SEE FACE'S TO THE VOICES 😢.

[@lp9194]

Spoken just like someone who DOES NOT HAVE THE dusease. Wasted words