My Lupus Story

#mylupusstory #sle #autoimmunedisease #lupus
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Hi there! I'm Amanda: a lupus advocate and (upcoming) author of The Girlfriends Guide to Lupus.

Learn about my lupus story and hear why I created this channel for women struggling with this unpredictable and misunderstood crappy autoimmune disease. It's my goal to use my voice to raise awareness and promote a deeper understanding of lupus.

My hope is by sharing my story someone who might be experiencing similar lupus symptoms gets the helps, diagnosis and the treatment needed.

Please keep in touch. Here's where you can find me:

For collaborations and business inquiries email:

[sheerazhenderson]

Thank you for sharing your story/ journey with this disease. I’ve recently been diagnosed with Lupus and Sjögrens and have started on Hydroxychloroquine. This has helped and my experience has been clouded (pardon the pun) by the brain fog, but recognised that some odd things were going on in my body. I’d learnt to live with a range of symptoms such as a painful hip joint, pain in ear/ jaw area, changes in vision, sun sensitivity to both eyes and skin, issues with chest, dry skin, unexplained swelling to foot and ankle, dryness to the 3 main areas you spoke of but always putting it down to a different cause. The main experiences I’ve had are with the medical profession not being fully aware of symptoms and joining all the parts of this complex puzzle into its proper diagnosis. There were earlier opportunities looking back for this to have happened, so obviously feel upset and angry by this. The brain fog made studying really difficult and I thought it was menopause symptoms I was having as the disease has a fantastic way of being elusive when it comes to diagnosis. I can totally relate to your sentiments regarding travel which I too have loved. Just feels more different now so I’m hoping that in time this changes. Also as it’s difficult to tell what’s going on inside our bodies, others close to us can’t see what’s going on as it’s mostly invisible. Sometimes this can feel a very lonely experience. Some days it’s 2 steps forward and 3 back.

[shellcshells]

It started with me getting mono in high school. I then got a weird rash only on my hands and soles of my feet. I then would get knee pain and couldn't be in track anymore. Fast forward to when I was 22. I was diagnosed with fibromyalgia (1996)... then I spent ten years in England. Would need 4-6 days to recoup after an activity or travel. This still is necessary. When I was 33 my hair began falling out in clumps. My legs hurt. My wrists hurt. I began feeling weak and exhausted!! I got sores in the corners of my mouth and as soon as they healed up, they'd come back. Then I'd get one in my right nostril. Comes and goes.
Then I developed high blood clot d-dimer levels in my blood. Butterfly rash on my face. I went to a rhuemy who told me it wasn't lupus. She was horrible. I went another 4 years with an exasperation that just wouldn't quit! I finally got into a very good gp. She saw my blood results... super elevated ANA, speckled, super high titer, etc.. she put me on hydroxychloroquine asap.. that was yesterday. So here I am 😊

[heatherparker]

Just got your book for a Christmas gift from my husband and it is one of the best gifts ever. December 2022 several lymph nodes in my neck were very enlarged. Went thru a few different doctors
(Hematologist, rhumatologist, allergist/immunologist)and ended up having a Excisional biopsy on 2 lymph nodes in October 2023 Still no answers. However after my surgery is when everything started going on. My hands started swelling with lots of pain, my body would heat up and sweat profuciously, i started getting the butterfly rash and my chest would rash up especially when i was in the sun. I now have figured out Garlic is a HUGE trigger. The day after any garlic intake my body is hating me. Body aches, fatigue, just feeling like death has struck me over night.... Bloodwork is not giving any answer as of yet but as my allergist has said that result could take a while to finally show positive and he can gaurentee Auto-Immune more specifically Lupus. Thank god for a good close friend of mine going thru it as well that support system is there. We got this!

[amandachay]

Having lupus can be a lonely and scary experience-I can relate to this. Happy to share this experience with you. ❤

[runner-dc]

I was diagnosed with SLE Lupus over 25 years ago after years of pain and suffering. I have a brilliant rh Dr. who treated me and after shifting my diet totally away from all gluten, dairy and sugar (including ALL processed foods) I went into total remission and remained in remission for over 10 years. I discharged myself from my rh dr. (big mistake) telling him that I was done with the Plaquenil and my lupus was gone. He nodded and just said "you'll be back". That was 11 years ago. Fast forward to last year. I was so sick of not having all the delicious foods that the rest of my family had, especially on holdays that I started cheating on my diet. I got away with it (sort of) for a full year. Two months ago my symptoms came roaring back, worse than ever. My primary care Dr. immediately did the RH bloodwork and sure enough, I have full blown lupus with rashes everywhere. I was SO lucky to get an appointment in 2 weeks with my old RH Dr. (one of the top RH Docs in New England). ALL of my other referrals were refused except one that gave me an appointment in August of 2025! My heart goes out to the folks suffering with this horrible disease and remaining untreated. My appointment with my RH is in 2 days and I expect he'll be waiting to tell me "I told you so". I will NEVER voluntarily discharge myself from my RH Dr. again now that I realize how hard it is to get an appointment with a new practitioner. What the heck is going on with the explosion in autoimmune disease recently???

[peterquirino]

Thank you for sharing your experience. I been trying to understand lupus as much as I can.
On 6/15/23 my wife and 14 year old daughter got their labs, and sadly they both came back positive with lupus. My wife has been having a series of symptoms for a while, and now we know why she's been having complications.

[jojokettler]

Thank you so much, Amanda.
I have been suffering for many years I was also diagnosed with sjogrens syndrome to begin with and then that changed about 2 weeks ago I suffer with severe fatigue my temperature fluctuates continuously, I have suffered with migraines for more than 20 years, brain fog weakness and continual pain it is as if I'm living all alone. it is a hard thing to deal with. I just came back from a holiday with my husband anniversary of 20 years. Unfortunately, I was sick the whole time my husband was such an absolute treasure he was so good to me. I have not been able to regain my strength since that trip. You are such an inspiration. I will follow your advice. Keep up the good work. Thank you, your new girlfriend Jojo

[rabina]

glad I found your channel, your story is so similar to mine

[Amularessa]

My first symptoms and I am still trying to get in with a rheumatologist, are fatigue, brain fog, body aches. I also have endometriosis and I'm sure there is a connection. My blood work shows inflammation markers all over the place and positive ana.

[stephaniewilliams]

It took me ten years to get diagnosed. Doctors told me that my joint pain was due to my weight or I was mentally ill/hypochondriac. I had epilepsy as a toddler and I was a sick and achy kid and young adult with many of the typical symptoms. A few years ago I was also with Sjogrens.

[LampWaters]

Thx. I needed hear some encouragement. So exhausted and I think bounds I need to set our my own expectations

[justagirlturning.]

Waiting on a diagnosis. I finally see the Rheumatologist next week after months of waiting. I already have one autoimmune disease so it’s likely I have another.

[samanthamejia]

I just got diagnosed after about 12 years of being tossed around to different healthcare practitioners. I like you, was very active as a child and young adult, BUT had strep throat often as well as very other illness repeatedly. I was Diagnosed after my husband had debilitating surgery and being away from home with that surgery. I was seeing a rheumatologist, but they never would put a label on what i had since my symtoms were so random. Until ALL my previous symptoms and a Butter Fly rash appeared on my face. Now, I am trying to learn how to cope with this as well as manage life 😅

[vanwyke]

Thank you for an interesting and entertaining discussion on Lupus. I wish you well dear.

[shellcshells]

Thank you did sharing you story. I was just diagnosed. Feeling lost.

[STORMS]

It's been over a year now and I am still going through a battery of tests. My specialist believes it is leaning towards Lupus as I have many of the markers (signs & symptoms) of it. However, because Lupus can mask itself as several other auto-immune diseases she has had to do a process of elimination testing.
My first sign was rashes that appeared on my face and knees. It wasn't the full butterfly redness rash, I had no redness on my nose. My knees and cheekbones were fiery red infernos. You could place your hand just above my skin's surface of the affected areas and feel the heat radiating from it!
The burning rash symptoms were on for and off and lasting sometimes up to an hour or more to dissipate.

[paragoncumulus]

I'm beginning to think I may have lupus. I've seen my doctor about chronic headaches, migraines, brain fog/forgetfulness, hip pain, chest pain and occasional unexplained pains in my knees and ankles that affect walking. My hips were x-rayed and I had lots of tests on my heart and nothing unusual was found. (When I was a teenager I woke one morning with terrible pain in my hips and was unable to walk. I remember being in pain and crawling because it hurt so much. I went to the doctor and never got an explanation. ) I wear tinted sunscreen every day to try and hide the redness of my face. If I don't wear it people comment about me looking sunburnt. I get occasional rashes on my face, I have a few patches of psoriasis, my fingertips turn white when very cold and I have the odd mouth ulcer now and then, and dry, itchy eyes. I don't have much energy but I have felt like that for so long that it seems normal to me, so I can't really say I feel fatigued any more than usual. I'm going to talk to my doctor about getting some tests done.

[dianemower]

I haven't been diagnosed yet, my appointment has been cancelled today after waiting 9 months on the waiting list and 3 1/2 years of begging my gp to refer me. Devastated is the word. I have painful joints, to the point of not being able to walk some days. Shoulders, neck, elbows and fingers are so painful. Plus im sleeping about 13 hours a day. All these autoimmune diseases are very similar and I've been told i have anti ccp antibodies in my blood. I just want a true diagnosis 😢

[Fabricwelder]

Has anyone tried goodbye lupus protocol?

[jesssands]

Currently diagnosed with uctd. Have a load of joint and tendon issues, plantar fasciitis. Neuropathy. Carpal tunnel. Arthritis, Photosensitivity since I was about 9y, now in my 50s. Raynauds all my adult life. All tests are negative except the ANA which is really high. Still waiting in the ANA neuclear dot pattern analysis.
I have really painful feet, 2y, hot, I don't know what to do with them. Which is completely alien to the Raynauds I had most of my life. Still have Raynauds elsewhere. My feet are much better if I can keep myself cooler, which is not always possible. Or no shoes. 🫤