How Christina Healed Adult-Onset Still’s Disease (AOSD)

The best practitioners all have what we call a “Hero’s Journey.” It’s their own story of sickness and healing.

You might know mine and Steve’s stories by now – how we both had digestive problems in college, and helped each other through the Specific Carbohydrate Diet.

But do you know why we talk about our story so much?

Our own experiences with sickness and healing are what power us to help others. We know what it is like to suffer – and we know what it is like to take back control and heal.

The people we help the most are the ones who see a bit of themselves in our story.

That’s why today, I’m excited to share our recommended practitioner Christina Tidwell’s Hero’s Journey with you.

She struggled with Adult-Onset Still’s Disease or AOSD, a rare autoinflammatory disease that brings on a myriad of symptoms, including persistent high fevers, joint pain, and a salmon-colored bumpy rash

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Now she’s med-free and helping others who are going through the same battle she’s overcome.

I hope you see something in Christina’s story that makes you think, “Hey, that is just like me.”

And if Christina’s story does resonate with you, I hope you’ll consider taking the next step to work with her.

[Enter Christina]

I Went From Completely Healthy To Really Sick In Just A Few Weeks

I was a tennis player, cross-country runner, and all-around healthy 18-year-old finishing up my senior year in high school when I started to feel vague, flu-like symptoms accompanied by a low-grade fever. I thought I was just tired from playing lots of tennis in the state tournament, or worn out from my school work, or honestly just had a case of “senioritis” and was feeling run down and ready to graduate!

But, instead of getting better, over the next few weeks, I got worse. Every night I would develop a fever – sometimes as high as 104°F – followed by drenching sweats. By morning, the fever was gone, but I felt exhausted. It was like being hit by a truck.

After about 2 weeks of fevers, I woke up in the middle of the night in excruciating pain from my left shoulder down to my tailbone. My back had seized up into a knot and the slightest breath in or out made me scream in pain. Something was really wrong and I knew I needed help.

My parents rushed me to the hospital and I was diagnosed with a pulmonary embolism – a blood clot in the arteries in the lungs.

My doctors were stumped. Why did a healthy 18-year-old develop a blood clot – and what did the flu symptoms have to do with it?

Getting Diagnosed

I stayed in the hospital for several weeks and was tested for every infectious disease my doctors could think of.

Finally, about two weeks into my hospital stay, I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) (this diagnosis has later changed to Adult-Onset Still’s Disease or AOSD).

My doctors were happy to be able to give me a diagnosis, but it was still unclear how the pulmonary embolism fit in to the picture.

My doctor’s thought that it was a part of the “perfect storm” that triggered my body to mount an attack on itself in the form of Still’s disease.

No one but me seemed to be really concerned about why I developed these symptoms. My doctors were happy to just know what I had, and the “investigation” officially stopped right there.

But My Diagnosis Was Only The Beginning

I was discharged from the hospital three weeks later on high dose steroids, which had stifled my fevers, and Methotrexate, which was supposed to shut off my body’s immune response.

I was discharged in time to walk at my high school graduation. I had lost about 20 pounds on my already-small frame, and I looked glazed over, shell-shocked and frail.

I wish I had known then that it all would be OK. It was so scary and confusing at the time, but answers and many good things were to come.

Dealing With Chronic Illness In College

I spent the summer visiting my rheumatologist and trying different medications to manage my symptoms. I didn’t get much relief, but I was determined to follow my dream of going to college in California.

I was on high-dose prednisone which made my face puffy, caused me to gain weight, and have extreme anxiety. I also had to give myself injections of a blood thinner every day. Even on the prednisone and Methotrexate, I was still experiencing:

  • Breakthrough fevers which exhausted me to the point that I was unable to get out of bed some days. I felt like every cell in my body had been hit by a truck after a long night of chills and fevers.
  • Extreme fatigue. I was constantly running on empty and had no energy.
  • Digestive issues. I had constant bloating and irregular bowel movements.
  • Anxiety and stress on a daily basis.

I could feel that my body was still severely out of balance underneath the stifling effects of the medications. I hardly recognized myself.

This was the lowest point of my life. I was so exhausted that it was hard to keep up with my school work and be a normal college kid. I couldn’t even drink alcohol because I was on Methotrexate (which at the time I viewed as possibly the worst, most isolating part if you can believe it! I could deal with the fevers, anxiety, digestive issues, but… no beer pong?! Sigh.)

I Followed Orders, But I Knew There Had To Be More

I was so desperate to feel better, that I obediently followed up with my doctors and did everything they told me to do to treat my illness, which was a regimen of medications.

But, even while taking all the medications they recommended, I was miserable. My bloodwork at the time showed:

  • Constantly elevated ANA
  • Elevated CRP that would come down moderately with medications and put me into the “you’re ok” category

While I’m very grateful to all the doctors who helped me, they all seemed to view me as a disease instead of a person.

When I asked about what I could do besides medication to help feel better – how to live my daily life, what to eat to nourish my body, or what other alternative therapies I could try to reduce stiffness in my body or decrease my anxiety – they never had any answers.

My appointments usually went like this:

“Your blood work looks ok, an improvement” – My doctor

“But I still feel really, really bad and it doesn’t feel like these medications are working. What else can I do? Would it help if I changed my diet?” – Me

“Continue taking the prednisone and this biologic, you don’t really have any other options at this point unfortunately, I wish you did. Diet has not been proven to help autoimmune disease in any medical studies, so you can try to cut out red meat but it probably won’t make any difference.” – My doctor

A Turning Point

Finally, I went to see the nurse practitioner at my rheumatologist’s office. After listening to my whole story, the one I’d told a million times, she looked at me and said,

“Wow, you’ve been through a lot, how are you doing with all of this?”

This question stopped me dead in my tracks. She was the first person, out of the dozens of health care workers I had seen, who actually looked at me as a person, not as a diagnosis.

From there, she began to ask me how my medications were working for me, and how we might alter them to better fit my needs and reduce side effects. She took a leap of faith and started me on a newer injectable biologic medication, that ultimately was the only drug that worked to alleviate my symptoms.

She never rushed me out of my appointments and she listened to how my disease was affecting all parts of my life. She opened my eyes to the idea that I was the one that had control, and by modifying my diet and lifestyle, I could learn how to live a life not ruled by my disease.

This gave me the insight I needed to seek out alternatives. From here, I took some control and embarked on my own journey to healing.

The Real Healing Journey Begins

I began experimenting with a general anti-inflammatory diet and found that it helped my overall energy and improved my symptoms greatly to eat whole, nutrient-dense food. This, to me, was revolutionary and something no one had told me before!

I wasn’t one of those people who simply cut out gluten or dairy and had all of my symptoms go away. I wish!

For me, changing the way I ate reduced the overall burden of inflammation in my system and gave me long periods of remission in between my flare ups. Combining diet with reducing stress, and biologic medicines and prednisone, I was able to live a fairly normal life.

I even went through nursing school and worked as an ICU nurse in hope of supporting others struggling with chronic illness, trying to make their way through the healthcare system.

Here are some of the tools I used during this time:

  • Naturopathy visits, which revealed I had adrenal fatigue and my cortisol was way out of whack (I blame nursing night shifts!) and I was deficient in some key nutrients like Vitamin D, Vitamin B and Magnesium. Supplements from my naturopath helped me to regain more even energy, but I was still getting regular flare ups during times of stress or even during times when there was seemingly no cause.
  • Acupuncture, which helped with stress reduction
  • Therapy, to help deal with the anxiety of a chronic illness
  • Yoga, as a way to channel stress and move in a way that supports my body (running increases inflammation for me and isn’t the best for my body)

Still Having Flares

Even with all these positive changes, I was still having flares every 8 months or so. My doctors thought that was as good as it could get, but I wondered if I could do more.

Then, I had the flare up of all flare ups. I experienced the high spiking fevers, rashes, fatigue and an immune system on overdrive just like I did when I was 18.

The anxiety set in and I was terrified because this time the prednisone and biologic medications stopped working and couldn’t control the flare.

My rheumatologist had me going from medication to medication, trying to find one that would work to quiet the flare and stop my fevers. I just kept thinking, “What if nothing works? What if I have to live like this forever?”

I was 28 at the time and I remember thinking it felt like I was so old, that my body was so weary and tired, and I couldn’t imagine living any more years feeling this way, it felt like I had already lived through a hundred lifetimes. It was horrible.

I was so sick, I had to leave my RN job for a period of time. I knew I needed to continue on the path of figuring out how to quiet down the burning flame of my disease. Although I felt awful, I wasn’t ready to give up and knew I had to keep moving forward and investigating.

Finding The Root Cause

In the midst of this horrible flare, I began working with a nutritionist who specializes in autoimmune disease and adopted a gut-healing diet. This changed everything.

As a nurse, I thought I knew enough to manage my own care. But it was only when I started working with a team of functional medicine practitioners myself that I finally got better.

I eliminated common dietary irritants, including sugar, gluten, dairy, and soy (for real this time, not just when it was convenient). And instead of just focusing on what to cut out, we also focused on adding in more nutrient-dense, gut-friendly foods that gave me fuel.

Tests my practitioners ordered also revealed that I also had a bad case of SIBO and SIFO (small intestine bacterial and fungal overgrowth). After thinking about it, I believe I’ve had these gut issues my entire life, I just never really paid attention. As a child, I had frequent ear infections and required antibiotics for those as well as strep throat, sinus infections and long-term antibiotics for acne in my teens. No one had ever asked me about these things! I thought being bloated to the point of pain after most meals was normal. I really did.

That’s been the biggest turning point in my entire healing journey – paying attention to signs that have always been there. While I thought I had been “perfectly healthy” until I got sick when I was 18, there had actually been a lot of smaller signs.

Beating SIBO

The eradication of SIBO and SIFO made a huge impact and was a big turning point in my healing. It was not easy though!

There were so many ups and downs in that process. I would do well for a few days, and would eat a food or have a stressful day and my bloating would come right back. I would taper down on my prednisone, only to feel chills and a fever coming on and have to ramp back up to 40mg. I went through many rounds of SIBO treatment and cried often thinking that my case would never be solved.

It took about 8 months, but, with the help of my practitioners, I was finally able to control that horrible flare, taper off my prednisone, and feel like myself again.

With the help of this gut-healing diet and some targeted supplements, I healed my leaky gut, eradicated some serious infections, and reduced my bloating and stomach discomfort.

I was pretty strict with the AIP/SCD diet for a few months and I really credit this protocol with healing my gut once and for all, and making me feel the best I have since my diagnosis 12 years ago.

My Health Today

I was on a few different biologics for many years, and they really helped me at certain points to live a normal, flare-free life before I was able to really get to the root cause of my issues. Last year, though, I felt in my body that I didn’t need them anymore. I decided, in conjunction with my doctor, to go off of them. I never thought I’d be medication free, but here I am!

I still have to consider my health and wellness practices daily, so I can keep my body in balance. This looks like:

  • Eating a nutrient-dense, whole foods diet (I follow the 90/10 rule where 90% of the time I eat clean and 10% of the time I eat whatever the heck I want! This works for me but it’s taken a while to get there)
  • Following up with my Functional Medicine practitioner Kristen Brown at Altheda Health to make sure my gut health and hormones are in balance
  • Doing yoga regularly (and only running occasionally), as it’s the best, least inflammatory and most health promoting exercise for me
  • Cultivating a breathing and meditation practice to release stress
  • Making sure I sleep a lot! I’ve always needed more sleep than others, and I make it a big priority

My Silver Lining

Nobody wants to get sick. But, I’ve learned that if I can view illness as an opportunity to slow down, quiet down, and listen to what is going on internally, it can be used as a great tool for healing and personal growth.

Illness, when simply observed with kindness and viewed without judgement, can provide us with huge insights into the very core of ourselves.

It can act as a catalyst for personal awakening and growth, because it forces us to become aware of what is going on in our bodies and our lives at the most basic level.

Those who have chronic illness, whether we like it or not, have to become masters at identifying subtle cues in the body and strengthening the mind-body connection as a survival mechanism.

This can come in the form of paying attention to food and what we put into our bodies, identification of environmental triggers for disease, knowing when to rest and when to keep moving, etc. Although this vigilance can be tiring, annoying, and cumbersome at times, it’s ultimately one of the key pieces of living a healthy, robust life and I’m forever grateful for this silver lining.

Why I Became A Health Coach

My own experience with autoimmune disease led me down the path of helping others in the autoimmune community. Like many of you, I went through years of suffering and trial and error on my own, knowing there was more I could do to improve my energy, reduce digestive symptoms, and get to the root cause of why my body began to attack its own tissues.

My goal is to use all of my experience and advanced training, so others don’t have to suffer on their own looking for answers. I really do feel it’s my life’s purpose.

Because of my own journey, I started my own holistic health and nutrition coaching business, Live Well with Christina, where I specialize in helping people with chronic autoimmune conditions to incorporate healthy, whole foods into their diet in a way that works for them and helps them improve digestion and gut health, boost energy levels, gain an understanding of the possible root causes of physical and emotional imbalance, and feel empowered to create a care team to support them and their unique needs for the rest of their life.

I believe effective treatment of autoimmune disease involves bringing together the best of conventional medicine and a more holistic approach with attention to diet, digestive health, stress, relationships and our environment. Having worked as an RN for several years, I have seen the many ways in which those with autoimmune disease aren’t receiving this whole-person care in our medical system. This is why autoimmune health coaches are absolutely essential to fill in the gaps and facilitate sustainable, transformational healing!

Want To Know More?

This SCD community that Jordan and Steve have created is so very important, and I want you all to know that you have support and a resource in me. Living with a chronic disease isn’t easy, but I want to assure you that no matter where you are, it’s possible to live a vibrant life not ruled by your disease and to never, ever, ever give up hope.

If you are in the midst of illness or trauma right now, and you feel like your body is revolting against you and it all feels hard and hopeless, I see you and I know your pain. I am here to support you, to give you a guide and something to hold on to as you make your way through this journey. You can click here to learn more about working with me . I would be honored to hear your story.

In Health,

Christina Tidwell, MN, RN, CHC

P.S. What’s holding you back? Learn more about working with me here. 

Jordan Reasoner

About Jordan Reasoner

Jordan Reasoner is a health engineer and author. He was diagnosed with celiac disease in 2007 and almost gave up hope when a gluten-free diet didn’t work. Since then, he transformed his health using the SCD Diet and started to help others naturally heal stomach problems. You can check out his story here and find him on Google+, Facebook or Twitter.

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3 thoughts on “How Christina Healed Adult-Onset Still’s Disease (AOSD)

  1. Avatar

    Christina, thanks for sharing your story. There is not a lot of info out there on Adult Onset Stills Disease (AOST). I am 20 years old and have been having these symptoms since August 2017. Dismissed as “allergies” in regards to the hives rash. “Sensitive to cold temperatures” in regards to my toes and fingers being swollen/sensitive. Finally Feb 2nd-18th 2018 ish I got the bad flare up you described. Fever for two weeks, extreme body aches and pain, swollen lymph nodes, hives, and muscle pain that put me in tears to sit up or walk to the bathroom. Disregarded as bad case of flu. Same things happened again April 30th, 2018 and went to ER for three days before finally taken seriously and diagnosed with AOSD May 4th, 2018. I have since been on 40mg prednisone daily. 20mg in the morning, 20mg evening. However I am about to start tapering the Prednisone to a biologic “Kineret” or “Anakinra.” It’s a daily shot. So we will see how that goes. But I hate the idea of how many side effects are associated with RA drugs (Rheumatoid Arthritis – basically cousin of AOSD). So I am researching all I can with what other people with this disease are doing.

    On top of the AOSD I am also Type 1 Diabetic of 19 years. So the Prednisone is doing bad things for my blood sugars; struggling to keep them below 300 all the time. So the sooner the better I can get off of Prednisone. I’m exhausted to say the least and yeah I haven’t even made it to my 21st yet lol.

    Again thanks for sharing & if anyone on here knows of support groups or what other people with AOSD are doing for treatment I welcome replies or questions!

  2. Avatar

    Thank u christina for shaing your story . I’m sorry that u suffer for along time . but u didnt give up … Good job .
    I also suffered for along time and finally I discover that I have histamine intolernce just 3 days ago . also diagnosed vitamin D deficiency….
    Before that i tried eveything low cab diet . gluten free diet and alot of medication but it didnt work with my case


  3. Avatar

    This sound interesting, my doctor is trying to load me with tablets. I am prediabetic, I donyT have sugar at all in my diet. My husband is worries as I am frightened to eat. I have pain in all my joints and muscles

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