how i got diagnosed with an autoimmune disease

4/14 Edited to

... Read moreLiving with unexplained chronic pain for years can be incredibly frustrating and isolating, especially when the root cause remains elusive. My personal journey began at age 15 with persistent knee pain, swelling, and inflammation. Despite numerous physical therapies, including electric stimulation and blood flow restriction, the pain continued without improvement. Early interventions, such as knee surgery at 19, revealed synovitis—a sign of inflammation inside the joint—but sadly, this red flag was overlooked. An attempt at genicular nerve ablation at 20, which aimed to numb the pain signals from my knee nerves, didn't work, highlighting the challenge of treating symptoms rather than underlying causes. It wasn’t until referral to a rheumatologist at 22 that I received crucial blood tests revealing elevated ESR and CRP levels and a positive rheumatoid factor, alongside imaging confirming synovitis in both knees and fingers. These findings pointed towards juvenile idiopathic arthritis (JIA) or rheumatoid arthritis (RA), autoimmune conditions where the immune system mistakenly attacks healthy joint tissue. Starting treatment with methotrexate injections, a disease-modifying antirheumatic drug (DMARD), was a turning point. This therapy works to control immune activity and limit disease progression. Later, the addition of Remicade infusions, a biologic therapy, provided stronger control over my RA symptoms and inflammation. These treatments have greatly improved my quality of life, allowing me to regain mobility and reduce pain. For anyone experiencing unexplained chronic pain and inflammation, advocating for thorough rheumatologic evaluation is essential. Early diagnosis and intervention can prevent joint damage and improve outcomes. Chronic illness comes with many challenges, but modern treatments and support communities, like the #autoimmunewarrior network, offer hope and empowerment to those affected.

4 comments

maryellen's images
maryellen

🥰 Autoimmune stuff sucks! I remember crying when the umpteenth doctor (a rheumatologist) walked into my hospital room, the day before exploratory spine surgery...I had lost the ability to walk at times...to say 'good and & bad news! I know what you have but we can't cure it.' I cried because something was real. It wasn't me playing at pain...which I was starting to be accused of...by my spouse. Spouse ate humble pie and I began the long adventure of finding which med, lifestyle, etc that would get me relief. Oddly enough, pregnancy gave that to me! Elevated hormones? That was a long while ago and I've just begun treatment with Simponi Aria. I send to you best wishes and hope you find a good doctor that understands and respects you. Suggestion, write your symptoms down before you go into the Dr office and don't let them leave the room until you've checked off all your questions. Once my doctor got up to put hand on the door. I politely said that I wasn't finished and that I would feel better if he sat down until I was done. He apologized and never did that to me again. Now I get a handshake and a hug! Fight for your comfort and future!🥰

See more(1)
maryellen's images
maryellen

Shame on me for going off on my own story. I apologize. I responded without scrolling thru your pics and explanations. I was obviously triggered but I should have known better. *sit down til I'm finished* taking my own advice a bit late. Again, I apologize.🥴

See more(1)

Related posts

Sickie for life: Autoimmune edition
Long story short, I’ve been sick for a while. Doctors finally figured out some missing pieces! Turns out I’m not just an anxious female (ok well I am that, too), but instead my body’s been trying to murk itself. I was diagnosed with Mixed Connective Tissue Disease, an autoimmune disease that co
Kelp

Kelp

18 likes

🌿 Living With Autoimmune Disease: The Battles No One Sees
Some days you look perfectly fine on the outside while your body is fighting a battle nobody can see. The pain, fatigue, brain fog, appointments, medications, and uncertainty can be overwhelming. Yet every day you keep showing up, even when it’s hard. If you’re living with an autoimmune disea
Stormy Jade • LifeWithGraceXO3

Stormy Jade • LifeWithGraceXO3

95 likes

autoimmune disease must haves
having a chronic illness can be so debilitating and draining. these are my must haves as a 22 yr old with RA!! PRODUCTS are linked in my bio✨!! #chronicillness #rheumatoidarthritis #chronicillnesswarrior #methotrexate #autoimmunedisease
halz

halz

711 likes

Healing Autoimmune Diseases Naturally
Healing autoimmune diseases naturally begins with understanding that the body is not your enemy—it’s communicating that something is out of balance. Autoimmune conditions arise when the immune system, designed to protect you, starts attacking healthy cells. This imbalance often stems from chronic i
💫 Jacquelyn 💫

💫 Jacquelyn 💫

352 likes

My Lupus Diagnosis Story💜
Last year around this time I was diagnosed with a chronic autoimmune disease. I began feeling sick 2023 spring semester but I thought it was due to the stress of college as well as the sickness that runs its course on campus. I noticed a problem once I can home and was not able to workout, eat, or
Adeyummy💗

Adeyummy💗

75 likes

COME TO WALMART AS A GIRL WITH CELIAC DISEASE 💛
#celiac #autoimmunedisease #celiacawareness #glutenfree #shopwithme
glutenfreerhi

glutenfreerhi

929 likes

Hi I'm Olivia
Hi everyone my name is Olivia, I am 22. I have and autoimmune disease called rheumatoid arthritis. I wanted to start this small little series where I talk about it, because I haven't seen anybody my age talk about living with this disease. So I'll give you a bit of background rheumatoid a
OliveGrace

OliveGrace

1 like

Hoshimoto's Autoimmune Disease and "Normal" Labs
Labs are important. But they don’t always capture inflammation, immune activity, or how someone actually feels day to day. You can have numbers in range and still struggle. You can look okay and still feel worn down. And none of that makes you dramatic or difficult. If you’ve ever left an
Kat | Cozy Food & Living

Kat | Cozy Food & Living

115 likes

Being diagnosed with an autoimmune disease is emotional trauma. Your world changes when a doctor tells you that you’ll have a condition for the rest of your life. The problem with 90% of autoimmune diets? They neglect the very thing that’s also neglected by conventional medicine: the trauma of livi
Gianna | Autoimmune.Babe

Gianna | Autoimmune.Babe

2 likes

celiac disease
#celiacdisease #weightlossandfatloss #tipsandtricks
Grace Elizabeth

Grace Elizabeth

19 likes

Autoimmune disease girlies wya??
Been gluten free for years and I’m finally getting more confident in my meal planning/prepping. I love eating clean whole foods it’s not boring, it’s a lifestyle to heal my gut, thyroid and feel my best☝🏼 #autoimmunedisease #hashimotos #cleanmeals #wholefoodsdiet #glutenfreelife
Sofie Tindall

Sofie Tindall

33 likes

Meals i’ve made since being diagnosed with IBD
Hiii everyone! Recently I was diagnosed with Ulcerative Colitis which as completely turned my life upside down. Im currently making an effort to change my diet with more healthy and balanced meals to try to help with my symptoms. There are not many people out there who talk about IBD on apps li
Mia Acosta

Mia Acosta

28 likes

The fight behind an autoimmune disease
Sending all my love the my fellow warriors #autoimmunedisease #autoimmune #autoimmunewarrior
jillian.genna.dietitian

jillian.genna.dietitian

3 likes

Ep.8: A Soft Life in Bloom This week we got really personal and talked about the struggles that come along with living with an autoimmune disease. I was diagnosed with ulcerative colitis in January of 2024 and it’s been one hell of a journey trying to navigate this space and lessen how to be
Key Tylett Beauty & Fashion

Key Tylett Beauty & Fashion

0 likes

A person with long dark hair showers, seen from behind, with water running over them. Three bottles of hair care products are superimposed, illustrating a routine for scalp health. Text overlays introduce the topic of managing scalp conditions.
A person with dark hair is showering, seen from the side, with water droplets on their skin. Overlay text discusses personal experience with a scalp condition and introduces a list of helpful products.
A bottle of scalp relief shampoo is displayed against a blurred background. Overlay text highlights its benefits for sensitive skin, providing a cooling sensation and helping with plaque buildup.
My Holy Grail Products for Scalp Psoriasis
🍓Life with an Autoimmune Disease I've had scalp psoriasis for over a decade. During that time, I've tried a wide range of over-the-counter products, some have helped and some have not done much. In this post, I'll share my top 3 tried and true products that have done wonders in relie
mary ₊˚⊹♡

mary ₊˚⊹♡

179 likes

A plate of AIP-friendly General TSO's chicken, featuring glazed chicken pieces served over a bed of cauliflower rice and garnished with chopped green chives. The dish is presented on a white plate against a dark background.
Autoimmune Protocol Diet General TSO's Chicken
A friend convinced me to join this community to post my AIP Recipes. I started the AIP Diet Elimination Stage this May and lost 30lbs of inflammation so far. I am unofficially diagnosed with Autoimmune markers of Crohn's Disease, Celiac, Rheumatoid Arthritis, and Lupus. The reason I am not
Millennial-AIP

Millennial-AIP

16 likes

postpartum is the most vulnerable seasons for being diagnosed with an autoimmune disease
Why? Because after birth, your immune system goes through an intense reset. This includes a sudden immune sysytem pop. 💥 If your body was silently holding on to inflammation beneath the surface, the exhaustion, hormone shifts, and physical depletion can trigger your immune system to become stuck in
Gianna | Autoimmune.Babe

Gianna | Autoimmune.Babe

0 likes

Do you have a genetic disease???
I’ve been losing my hair since I was 19 years old in periods of telogen effluvium and regular androgenic alopecia. Being diagnosed with this changed my life and my mental health. I'm always worried about losing clumps and if other people can see my shedding. I love my hair and it's so sad t
𝓐𝓵𝓮𝔁𝓪💗

𝓐𝓵𝓮𝔁𝓪💗

767 likes

Educate, Advocate, & Empower others. navigating autoimmune disease, gastrectomy
#gettoknowme Educate, Advocate, & Empower others. navigating autoimmune disease, gastrectomy recovery, & invisible illness. By honest storytelling & awareness. MCSW👩‍🎓
kenzie Thieman

kenzie Thieman

1 like

Autoimmune girlies unite 🫶
#autoimmunedisease #autoimmunehealing #chronicillness
Kim🍒

Kim🍒

117 likes

The Invisible Illness: Dysautonomia/NCS/POTS
Hi, I’m Grayson and for the longest time I had so many problems with my body. Everyone always told me I was just crazy and it was all in my head. Out of nowhere I: 1) Would shake almost like I had Parkinson’s Disease 2) Can’t do high temps outside (which I hate because I love Summer) 3) Coul
Grayson Lewis

Grayson Lewis

40 likes

‼️The Root Causes of Auto-Immune Disease‼️
As a Naturopathic Practitioner and working with several different clients and family members with autoimmune diseases, I’ve seen incredible progress and reversal of symptoms and disease with targeting the root cause and being diligent with lifestyle changes. When you have an autoimmune condition th
Herbswithjen

Herbswithjen

209 likes

Just diagnosed with Crohn's Disease?
I love swapping stories and experiences with other people with Crohn's! #crohns #crohnsdisease #ibd #naturalremedies
Ruth

Ruth

1 like

How my son was diagnosed with a rare disease
Story time: this is also a story to encourage mothers/fathers to keep pushing if you feel like there’s something wrong with your kid. I knew for sure he wasn’t okay and even though I felt embarrassed and made to feel like I was over reacting by going to the ER 3 days in a row, I knew I had to be an
ana laura

ana laura

26 likes

My 14 year old son was diagnosed with juvenile ideopathic arthritis 4 years ago. He was in a wheelchair for months before we got his official diagnosis and treatment plan together. Today, this kid is a captain on his hockey team and scored 5 goals in one game! Unbelievable how he preserves and does
Katie-Wren

Katie-Wren

1 like

How Unhealed Trauma Turns Into Disease
Unhealed trauma doesn’t just stay buried in the past. It lives in your nervous system, your muscles, your gut, your immune system. Over time, it can look like brain fog, autoimmune flares, chronic fatigue, migraines, or even dementia-like symptoms. This is not “all in your head.” It’s your bod
Soft Truths 🪽

Soft Truths 🪽

301 likes

Living with Sjogrens Syndrome at 28 ✨
What is Sjogrens? Long story short.. Sjögren's syndrome is a chronic autoimmune disease where the immune system mistakenly attacks moisture-producing glands. I was diagnosed with it 4 years ago and it’s been a journey but I’m a fighter & will continue to fight to live a quality li
Tyler Michelle 🩷

Tyler Michelle 🩷

36 likes

See more