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Spondylo-what? My journey to spondyloarthritis diagnosis

Part 1 of 2 My body has hurt for as long as I can remember. At first it hurt from the thousands of hours I spent each year training as a high-level competitive gymnast. From ages 6 to 17, I spent my days pushing my body to the limit and defying gravity. My muscles ached, my hands ripped, and occasionally my bones broke. And that was a given of the sport. When I stopped gymnastics, my body continued to hurt. While my calloused hands became smooth, and my broken bones became strong, my body continued to flare in cycles of pain that left me frustrated. I put off joining the track team for a year because running made my back feel like flames were spreading across my low back. Laying on my stomach caused searing pain in my hips. And I figured this was the penance owed by a body that spent thousands of hours pushing to the limit. I learned to live around the pain and hoped it would disappear. I found a new love for running when I started college. I loved the slap of my feet against pavement as the beauty of the world raced by me. I loved blasting music and losing myself in my thoughts. As my runs became longer, I experienced aches and pains that I attributed to pushing myself too hard. My ankles and hips would ache with such ferocity that I assumed I must be injured. And on occasion, I would wake up with so much sacroiliac (SI) joint pain—the joint connecting the pelvis to the spine—that I would need to stay in bed for the day. I began to realize that my experience was abnormal when I learned that my friends from gymnastics did not experience debilitating pain. I began reporting joint pain to every doctor I saw—several gynecologists, primary care doctors, physical therapists, and a hematologist—and every single one of them told me my pain was from my years in gymnastics. I was never given a referral to rheumatology, and was never asked follow-up questions about joint pain, and never had inflammatory panels (often used to detect autoimmune diseases) done. Fast forward 10 years, and I am 27 years old. The pain has become more intense and more frequent. I have to stop running altogether, and finally have a team of physical therapists who take my pain seriously. But none of us understands why my body seems to flare. A year into physical therapy, everything comes to a head. I return home late from work, my SI joints hurting so intensely that I can barely walk. When I wake up the next morning, I cannot move. Sitting up and rolling over result in waves of pain so intense, I feel nauseous. It takes me an hour to sit up. I have to drag myself to the bathroom, and it takes another hour to get into the shower. I send a panicked email to my physical therapists, book a virtual urgent care appointment, and Instacart myself crutches. I lay on the floor in my room sobbing in pain and despair. I will spare you the gruesome details of the 72 hours from the time I woke up, to the time my physical therapist diagnosed and adjusted my dislocated SI joint. But in those hours, something important happened—a physician finally listened. Of all the years I spent begging doctors to take me seriously, a virtual urgent care doctor listened to me cry in pain and tell my story with a look of astonishment. I told her that a mere 24 hours before, I had sat in a gynecologist office complaining of joint pain, and had labs done. “She did not check your inflammatory panels?” the urgent care doctor asked in shock, “Let me check those for you.” Those labs confirmed elevated CRP (indicating inflammation) and the presence of the HLA-B27 gene (highly associated with autoimmune diseases and arthritis). MRI imaging plus those results confirmed my official diagnosis: non-radiographic axial spondylarthritis—arthritis of the spine, pelvis, and sacroiliac joints. After over a decade of advocating for myself, I finally had proof. I did not make this up. And I did not do it to myself. As I write this, I still marvel that in all the years I spent informing doctors of my joint point, not a single one believed me enough to run a simple lab. A lab that gave me answers. A lab that could have saved me years of pain. The months of healing have not been easy. I’ve spent countless hours under the care of my physical therapists, K and E. I cannot tell my story without thanking them. K did research on my diagnosis from the moment it was received and has not stopped since. And E tenderly listened as I cried tears on the PT table, never missing a chance to make me feel supported and affirmed. My story is not unique. The average time to diagnosis for spondyloarthritis is between 7-10 years. Women are more likely to experience longer delays to diagnosis, or never be diagnosed at all. Today, 5 months later, I went on my first hike since diagnosis. I received my first dose of cimzia, the biologic to treat my arthritis, a few weeks ago.. Pain twinges briefly from time to time as I hike, but ove


A rough day, a breakthrough, and a little hope

Hey, all! So, today was not a great day, health-wise. The #InflammatoryArthritis crew will understand... I always manage to come down with something around the holidays. Seriously, it's every. Single. Holiday. This time, I caught a little cold that turned into a sinus infection, many thanks to my suppressed immune system! Yay. :)

Today, I was feeling stiff, pained, exhausted, and generally yucky. During a burst of energy, I played the piano for a bit, but I became frustrated when I couldn't play with my usual agility. (Piano + sore joints = difficult.) So I resolved to sing—and that was good! A creative expression always helps me feel better when I'm mentally or physically down.

But the best part of today? Well, I learned that there is a significant interaction between two of my medications—and this interaction is likely responsible for my recent extreme fatigue! On my doctor's advice, I will be stopping the newer medication to see if the issue resolves. Let's hope that I wake up feeling a little better tomorrow morning. :) Yes, it's frustrating when a treatment fails, but I'm more excited than I am disappointed. It's been really rough lately, so it's hopeful to know that something is looking up!

For anyone curious, I am experiencing an interaction between a TNF inhibitor (a biologic or disease-modifying anti-rheumatic drug) and a neuroleptic agent. No interactions between my two specific medications have been documented, but interactions between other DMARDs and antidepressants are known to cause confusion, fatigue, and dizziness!

#Arthritis #MentalHealth

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Yet another trigger?

Does anyone else get a flare after driving or “passenger-ing”? I’ve been diagnosed with fibro, CFS and Raynauds. I also have a extensive arthritis in my neck and I am prone to migraines.
The only thing I can do these days (until I figure out something else) is drive for Doordash. But I’m limited to about 3 hours a day because more than that and the next day I have headaches, muscle pain, serious fatigue, and stiff/sore/achy joints. It’s starting to stress me out which obviously isn’t helping.
Would love to hear from anyone who deals with this or even anyone with ideas or theories about this and why it happens.
Thank you!

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Signs My Doctors Missed #EhlersDanlosSyndrome

I won the lottery on genetic diseases, all diagnosed later in life. Sarcoidosis, Raynaud’s Syndrome, Autoimmune Arthritis & now Hypermobile Ehlers Danlos Syndrome.

The symptoms of Ehlers Danlos were there from the start. My Drs never added them up and missed these symptoms:
◼️HYPERFLEXIBLE ▪️Bend thumb to wrist
▪️Crisscross fingers
▪️Hyper flex elbows
▪️Jaw pops out of socket opening mouth
▪️Can put my hands flat on the floor bending over
▪️Knee caps dropped often
▪️Was teased because I ran strange
▪️Hips sublex out of alignment easily
▪️Mild scoliosis
▪️Clothing & fabrics irritated my skin
▪️Scars are sensitive to touch
▪️Can’t wear necklaces or heavy clothing on my neck
▪️Sharp bone pain when young
▪️Smooth, soft, stretchy skin
▪️Horizontal scars across the back
▪️Wounds slow to heal

My maternal grandmother, mom, daughter and son all have these same symptoms. I am the only one diagnosed thus far. What used to be a novelty as a child now causes great pain.
#EhlersDanlosSyndrome #IBS #HyperFlexible #TMJ

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Why Does Everything have to be a challenge?

I get up each day with good intentions of progress, getting to what I didn't day before and so on. I have so many ideas to create this and that, or rearrange things , add this or that to rooms and love DIY projects. Yet I hurt with arthritis# and past injuries that have left deformed bones in lower back , shoulder and hand on right side both with inflammation, tore rotor cup and this is hand I use most. I try and to implement Mind over Matter and work through the pain , and now knowing my limits. But regardless it's either everything I touch gets dropped, everything I'm set to do ends up never just A or B it's got to have A,B,C,D etc., or nothing fits the way it should. By nighttime I'm exhausted mentally and physically to point once I'm down I have to make sure I have what I need by me for getting back up isn't an option. Simple tasks like showering, getting dressed. It's either no hot water, can't find what fits, blow dryer dead etc. Cleaning house, it's either vacuum won't start or it won't suck up dirt. It's in everything I do its got to be some damn hassle always. And I just give up eventually, depression hits me and I'm out for however long. There's no support around me , I'm alone and I can't stand the struggles each day .

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I'm back

So I haven't posted in a long while. Have had one health issue after another and it's just been to much. Pain from Carpal Tunnel has had me in tears with my hands curled up at my chest. But scheduled for follow-up test results and to schedule surgery end of the month. Thank God for CBD gummies. I might feel zombified but it lessons the pain. Nothing else does. Fell and sprained my ankle; which took like two different braces and 3 months to heal. Thrown out my back twice. Still homeless living in the back of my friends store. But you know what?? I am blessed I get to wake up in the mornings. I still have use of my legs no matter how bad my skeletal pain gets in my shins; I know it will pass. I get to bathe when my hands allow it. I know I am loved by many and I've gotten the first ten pages of my book getting edited as we speak. Yes, in many ways my live really sucks! However, there's so many more ways it doesn't. No matter haw bad live and our bodies crap on us, please remember to count your blessings when it starts to get bad. That's one of the things that brings my mindset to a better place. #MentalHealth #ChronicLungDisease #ChronicIllness #ChronicPain #EhlersDanlosSyndrome #Fibromyalgia #MentalHealth #Addiction #Arthritis #PTSD


Tears of Gratitude, Not Frustration

Part 1 of 2 It’s an unfortunate reality that as a chronic illness patient, most of us have experienced tears of frustration surrounding doctor appointments. There are countless stories on social media of patients not being listened to, doctors gaslighting, or prescriptions not being called in as promised. These experiences don’t even include the tears from pain, unrelenting illness, or feeling abandoned by friends and family to manage the challenging life we’ve been given by our bodies betraying us.

Recently, I had tears start flowing from my eyes and rolling down my cheeks during my final physical therapy appointment with a certain provider whom I’ll call Noah. This time the tears were not from pain or frustration. As Noah performed gentle myofascial release manipulations on the over-reactive muscles surrounding my neck and head, it was tears of gratitude that started spilling as we talked about his plans to move, his job search, and how far I’d come under his care.

Last winter I had been a fortunate physical therapy patient to land in front of Noah because of a partial frozen shoulder. I recall telling him “I’m going to be one of the most challenging patients you’ve ever had” before going into my list of comorbidities including a rare neuromuscular disease, a full-length spinal fusion, severe arthritis as well as fibromyalgia. Noah asked pointed questions and didn’t seem the slightest bit fazed by the challenge to treatment that I presented. Impressively, on my very first appointment he found the root of the pain in my shoulder, and he immediately gave me a measure of relief by massaging the muscle that was encapsulated.

At my next appointment, when Noah checked in regarding how I had felt in the days following my first treatment, he learned that I also suffer from migraines. He surprised me when he had me lay down and started doing some gentle but major relief inducing manipulations on my neck and head. One such movement, where the skull is ever so gently lifted from the spinal column, was the same technique a very talented osteopathic provider had used on me decades prior.

“Do that again’ I quietly asked Noah. I hadn’t had that kind of relief in so long and I knew it helped immensely.

The days following my first myofascial treatment with Noah, I found myself moving my head from side to side and putting my chin to my chest, or stretching my head as far back as it would go. Thanks to Noah’s handiwork, I could move my head around like a person not afflicted with neuromuscular disease or a spine that had multiple muscles locked up to do a full-length fusion. It was literally like the best Christmas and birthday gifts all wrapped up into one to finally be able to freely move my neck again!

In the decades since my first experience with myofascial release, I’d searched relentlessly for a provider who had knowledge of the technique because typical physical therapy treatments only exacerbated my pain. I’d occasionally find a resident trained in it; but appointments were difficult to schedule, and the residents rotated faster than my neck could keep up with. Finding Noah was such an unexpected gift; and I looked forward to our twice a week appointment to not only work on loosening and rehabbing my shoulder; but he also continued work on my neck and head, giving me welcomed relief from relentless migraines.

Imagine my dismay when I realized Noah was an intern who most likely would be moving on closer to his mid-west home state at the end of his rotation! Each week I checked in on the possibility of him continuing to work for the company he was interning at. As time ticked on, I had a feeling of impending doom and Noah did the best he could to reassure me that he’d make sure whomever took over in his place knew what I needed for treatments. None the less, panic continued to set in as we got closer to the end of his rotation.

That last appointment was, as I mentioned, tearful. I am not an easy crier, so when the tears started flowing, I was in a bit of shock. Discussing what had happened with my therapist later that week, he knew exactly why the waterworks started. “You found someone who not only listened to your pain; but who also had the skillset to be able to help. This has not been something common in your life as a chronic illness patient, let alone your life in general.” My therapist was not wrong. I had already written many of the same words my therapist used describing the situation in a thank you note that I had given Noah at our final appointment together. He was a talented young physical therapist who was going to bring relief to countless patients through his attentiveness to detail, knowledge and practice. I was indeed blessed to have been assigned to him with a painful shoulder.

I had hoped that Noah’s detailed notes on my case would be helpful with the replacement physic

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Trying really hard.

My health (both physical and mental) has been so insane these past 2-3 years. Autoimmune diseases, neurological issues, spine issues, endo, fibro, possibly lupus, spine surgery that didn't quite work not to mention panic disorder and bipolar 1. Everyday is a struggle, I'm really trying to do the best I can, one day at a time. But I feel like a failure, I'm trying to run an online business with very little help, and keep myself together. I need help for a lot of basic things like cleaning my house bc physically it's really hard. Now my mental health is acting up too and I'm coming down a manic and then mixed state. I feel like I'm deformed, like a failure, like I'm letting everyone down and I can't keep up, trapped, isolated. I'm overwhelmed and exhausted.

#Bipolar1 #BipolarDisorder #MentalHealth #BodyDysmorphia #Fibromyalgia #Lupus #HashimotosThyroiditis #Endometriosis #ADHD #Anxiety #Arthritis #SpinalCordInjury

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How is your health condition making you feel today?

On days when a migraine attack or other chronic illness flare-up has you lying in a dark room by yourself all day, the last word you might use to describe where you’re at is “thriving.” It’s on days like these when you might question if it’s even possible to thrive with a health condition — especially in the traditional sense.

The Mighty’s migraine community knows that feeling all too well. When we asked if they consider themselves to be thriving with migraine, 60% said that they fall somewhere in the middle on the surviving-to-thriving continuum; it all depends on the day. On one end of the spectrum, 31% of folks who responded to our poll said they are merely surviving in life with migraine. On the other end, 9% feel like they are thriving.

Do you feel like you’re thriving in life with migraine or another health condition? What contributes to that feeling?

As a bonus, share your metric for what it means to be “thriving.”

🧠 Check out episode 12 of The Mighty’s podcast Health and (un)Wellness to hear two Mighty staffers reflect on their journeys with migraine and where they think they fall on the surviving-to-thriving spectrum.

💚 Listen to the episode on Spotify:

🍎 Listen to the episode on Apple Podcasts:

📚 Read the transcript:

#Migraine #ChronicIllness #ChronicPain #Lupus #MentalHealth #RareDisease #EhlersDanlosSyndrome #Arthritis #Spoonie #Disability #CheckInWithMe #BipolarDisorder #MultipleSclerosis #Depression

What It Means to Thrive With Migraine

In this final episode of Health and (un)Wellness' first season, our hosts share their thoughts on what it actually means to thrive with migraine.
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