Above the Shoulders Lupus Symptoms Your Doctor May Miss

Are you losing hair? Battling nagging headaches? Or maybe noticing dry eyes and mouth ulcers? These head and neck lupus symptoms often go unnoticed, but they can tell you a lot about your disease activity.

In this video, I’ll break down the lesser-known signs of lupus above the shoulders, how to recognize them, and what you can do to manage them.

💜 If you have lupus or care for someone who does, don’t miss this one—it could change how you manage the disease.

💡What you’ll learn from this video:

➡️ How lupus can affect your head and neck—from hair thinning to jaw pain—and why these symptoms are often overlooked.
➡️ Why headaches in lupus are controversial and how to know if your headaches could be lupus-related.
➡️ How lupus can impact your hearing, eyes, mouth, and jaw—and what signs should prompt a conversation with your doctor.
➡️ The key head and neck symptoms that might be early warning signs of a lupus flare.

Watch the full video to learn more!

🔗 Links:

The guide you need to tell your doc your story -and get answers once and for all!

🎥 Watch more:

⏱️Time Stamps:
0:00 Intro
0:56 Lupus Hair Loss
2:00 Lupus Headaches
4:05 Lupus Dry Eyes
4:40 Lupus Nose Symptoms
5:14 Lupus Hearing Loss
6:09 Chondritis
7:08 Lupus Mouth Ulcers
8:06 TMJ Pain
8:41 Lupus Lymph Nodes
9:51 Lupus Rashes

📖References:
Udompanich S, Chanprapaph K, Suchonwanit P. Hair and Scalp Changes in Cutaneous and Systemic Lupus Erythematosus. Am J Clin Dermatol. 2018 Oct;19(5):679-694. doi: 10.1007/s40257-018-0363-8. PMID: 29948959.

Yuen E, Fried J, Nguyen SA, Rizk HG, Ward C, Meyer TA. Hearing loss in patients with systemic lupus erythematosus: A systematic review and meta-analysis. Lupus. 2021 May;30(6):937-945. doi: 10.1177/0961203321997919. Epub 2021 Feb 27. PMID: 33645314.

Samy E, Zahran ES, Sabry M, Elshony H. Headaches in SLE patients: a cross-sectional analysis of clinical, immunological, and Radiological Correlations. BMC Rheumatol. 2024 Oct 31;8(1):57. doi: 10.1186/s41927-024-00424-4. PMID: 39478616; PMCID: PMC11526631.

**Please note - we do not provide medical advice, opinions or diagnosis via email, phone or social media messaging.

👩🏻‍⚕️ About me:
Hello! I am Dr. Elizabeth Ortiz and I’m so happy you are here. I am a double board certified Rheumatologist with over 15 years experience practicing Rheumatology and am passionate about teaching & empowering patients to partner with their doctor.

** The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional. Any comments and/or recommendations made in the comment section by anyone other than Connected Rheumatology does not reflect the opinion or recommendation of Connected Rheumatology.**

[weaponsman]

Photosensitivity - I have to wear sunglasses everytime I leave the house and my house is kept dark. When I was starting to get sick with SLE, the lights at work would bother me and I would turn off the lights in my office. I can't be out in direct sunlight for more than a few minutes or I start feeling nauseated. Cloudy days are a little better but when the sun is out, forget it. Fun stuff!

[lesliec]

Thank you. Background music is not preferred. It is actually making harder to learn the content you are sharing.

[theadjokovic]

Doctor Ortiz, I really hope you know how appreciated you are. I watch all of your videos regardless of whether or not they're related to my illness, thank you so much. You have helped me understand my condition beyond what I can describe

[nancymartinez]

Thank you for mentioning hearing!!! My hearing has gotten significantly worse in the last couple of years and I was diagnosed with lupus last year. Thank you!!

[swaziswimmer]

My dermatologist says my hair loss is from lichenplanopiloris.
My rheumatologist says I have Connective Tissue disease (doesn't seem to fit into anything more specific).
Neurologist says headaches and photosensitivity is from Chronic Migraine.
60 and suddenly a bunch of new diagnoses? What on earth?? I wish they could be narrowed down to one TREATABLE cause!

[diegorivera]

Hola Doctor Ortiz.. is wonderful that you share such great information and a thank you very mucho. I was wondering if you could make a video regarding lupus but in Spanish language if you can; that way Spanish speakers will get this great information as well.

[Claumx]

The worse is Scleroderma. 😢 Patients can have SCL and lupus, just Scleroderma patients really need urgently medications against the tightening. Please please talk more about it.
If only more money could be invested to investigate it. 🙏🏼🙏🏼🙏🏼
Praying for a cure and stop totally the skin fibrosis, tightening 🙏🏼
Autoinmune conditions need more awareness!!!!

[corrieraaths]

Thanks dr, I have still a lot to learn. Especially about body pain. I am from Pretoria South Africa. Unfortunately there is not a lot of money available for meds. Thank you for your help and support and information

[boplo]

I was hoping to learn more about nasal ulcers.

[sweetpea]

omg why is there music in the background

can’t understand what you’re saying

[crpsdiaries]

What about seizures & auras? I get both & occular migraine without the pain.

[katdiment-davies]

A lot of these symptoms are the same as fibromyalgia, how is it determined what illness you actually have?. I was told I have fibro, I suffer alot with migraines, jaw pain, pain behind my eyes, face feels like ice. Is it fibro or is it something else 🤔

[yvonne]

I had a change in the ability to smell with SLE, I could smell everything from quite a distance. My ability to smell became accute and it would send some allergies into rocket mode. Thankfully after about 10 years of treatment including immunosuppressants this started to recede, but it could have been getting older that caused the unique smell ability to get better or worse depending on your perspective.

PS insect bites covered my face each night if I had gone out the previous day, another indication of lupus.

[thirdeyelady]

Thank you I just found out I have lupus I'm 36 and a mom it's hard and really scary 😢

[monikadossa]

Oh wow. I wondered why sometimes it feels so tiresome to eat. Like chew.

[karriebevan]

My daughter just dealt with her third bout of mouth ulcers in a year. She is so traumatized. She is also allergic to the sun. After they tested her for HSV1 and 2 and those came back negative, she is being sent to the rheumatologist. However, our state was without a pediatric one until this month, so we must wait. We do have a lot of immunodeficiencies in our family, so we are just hoping for some answers. 😢

[Judith_daughteroftheKing]

Agree, I just went to a new rheumi and he just went to straight take methotrexate when I said I didn't want to unless tests show I needed it he lost interest then put lies in my notes 🤦‍♀️😭 so I won't see him again 💜🦋

[margaretlatocha]

Just bored sitting here with lupus can't drive anymore unable to walk much too much with the pain and fatigue

[cubanadiense]

when it comes to instructive videos, a music that helps maintain focus would work best, (calmed video games music) or certain frequency sounds
thanks for sharing this knowledge

[amandasmith]

Have antiphospholipid syndrome. Just had a C4 low and normal C3. And positive ANA. have symptoms you describe