One of my torn paper pet portraits
This is very soothing to my mind. I can do it with the arthritis in my hands
This is very soothing to my mind. I can do it with the arthritis in my hands
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
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!
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.
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
▪️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
▪️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
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 .