When a Doctor Saw How 'Broken' I Felt Living With Pain
On October 1st of 2018, my life changed. I was diagnosed- on top of other things- with fibromyalgia, Ehlers-Danlos syndrome, and possible arthritis.
I was astounded. The past six to seven years, I was under the belief that I had amplified musculoskeletal pain syndrome (AMPS) that caused “fake” pain — stemming from a rewiring of my nerves, since a reconstruction surgery had gone wrong.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
All this time I had thought it was simply that syndrome, and all the pain and struggles I had were not only beyond my control, since pain medication would not work, but also that my pain was somehow my fault for making God angry, or doing something wrong, and this was my punishment.
Obviously, the realistic part of my brain knew this was ridiculous, but there was still a part inside of me that worried and cried, thinking my life would be spent bed bound, in tremendous pain.
I still remember the appointment where I was given the AMPS diagnosis like it was yesterday. My parents had taken me from doctor to doctor who had poked and prodded me. I had blood tests, X-rays, MRIs, and everything in between. They would have me do this and that, and I would go along with it like a puppet just praying for the appointment to be over so I could go back to pretending I was a normal teenager, smiling through the pain and hurt.
As we drove to that appointment–what felt like the millionth one in a year–I decided that I was done. After this appointment, I was giving up on trying to “solve” myself. I knew that learning what I had wouldn’t change anything. I would still have it and I would still have activities slowly being restricted because things were too painful. Nothing could stop the tide of suffering that would inevitably drown me in agony and torment. What was the point? I was done.
I was prepared to submit to my slowly greying life.
“My pain has defeated me,” I whispered to myself quietly so my parents wouldn’t hear. As we got out of the car I told my parents my resolve that this would be my last appointment. “I am still a kid, but I haven’t had a chance to be one. I am done visiting doctors who move me around and claim I am an enigma.” They worriedly nodded. And into the building we walked.
The doctor was very quick. She asked only a few questions, moved me a few times, examined my scars from my surgery and declared, “I know what you have!” in the most triumphant of manners. “You have amplified musculoskeletal pain syndrome. It’s extremely rare to have it full-body, but textbook otherwise.” She handed me a packet and my parents were beaming with joy. “Finally an answer,” my mom sobbed, relief shining in her eyes. And what did I do, you ask? I skimmed the paper and was ready to go home. No medicine to help, but there was a facility where you could get on a military type schedule and “exercise the pain out” as the doctor put it.
“Nope.” I got up to leave. My parents were taken aback. They tried to talk me into it– as did the doctor. This was the one answer we have been hoping for and it would solve everything they proclaimed. “Just a few months,” they tried to cajole. I refused and reminded them I had said I was done. Dejectedly they seceded. We got up and walked out. My Dad and I deciding to wander around the kid’s palace of a medical building; my mom said she would get some lunch for us and headed to the cafeteria. All together again, we headed on our journey home.
During a quiet moment while my dad was asleep and my mom was driving, she told me how she had run into the doctor while she was getting lunch. My dormant curiosity stirred. “Tierra,” she softly said, “She told me that she took one look at you and thought ‘that girl is defeated, broken.’”
I silently sobbed. To top it all off, later that night, I cried into my pillow. I had made myself stop feeling. I had given up hope and I knew it.
With desperation and a hint of fear, I vowed to change. I didn’t want to be broken and defeated. I wanted to be my old self. The positive beam of light that brightened a room and made friends with as many people as possible.
I missed myself. Slowly I started reminding myself to feel again. To come up with little dreams I knew I could accomplish. A piece of candy here, a little bit of fun there. I started to stretch out and learn to love things from food to art. I learned to love life again. The sun had risen and all of the darkness was gone. Vanquished like the vile foe it was.
And then my pain got worse.
No one told me what to expect, how pain would change me, or even how I would lose myself in it and not even have a glimmer of semblance of my true self. I was struggling just to survive with sanity intact.
Then the doctors appointments started again. Slowly but surely I was turned away, leaving behind doctors scratching their heads and muttering to themselves “not possible.”
At last, we were out of doctors and game plans. A rheumatologist came into the picture, the puzzle solver. True to his name, he gave me not only one diagnosis but three. After a few months of denial, I began to study the syndromes. Like a beacon of hope and enlightenment, I began to recognize the workings of my body that I had previously tried to shove in a tidy little box and ignore. I tested and tried what would make my pain worse and what would make it better.
I finally regained a sense of control.
Despite being chained to pain that would never disappear, I felt free. “Knowledge is power” as they say. And I was on top of the world. No longer did I personify defeat or despair. I was the embodiment of growth, learning and hope.
Once again my life had changed. And for once, it was for the better. I know my pain will never end, and no doubt it will get worse and worse to the point where more activities are taken away again.
But I have a few weapons in my arsenal to fight this war against fate this time around– and for all times after.
I have learned a great deal about myself –the good, the bad and the ugly. No amount of pain or suffering can take that from me.
I fought tooth and nail, blood, sweat and tears for my right to know what was going on with my body. Experience is the best refiner’s fire. And luckily, fate made those tools everlasting with the right amount of give and take.
Forget life and lemons. For me, life has given me weapons. And sometimes, we are just destined to be Mighty — if we choose to persevere.
I have dealt with pain for 17-almost 18 years already, passing the half-my-life-with-pain mark now being 29. It started with me being born with twisted leg bones followed by discovering this at the age of 13 after pain in my knees from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. Epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken and twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body-extremely rare. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school. Luckily my ranking was 4th so I still graduated with extreme pain and with help from others who had to write for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong medication to ease my molecular deep ache. Severe Plantar Fasciitis kept me avoiding walking at many costs. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher with many more complications taking over every bit of my body. I joined this site for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face. I am now diagnosed with EDS, AMPS, Fibromyalgia, Hypothyroidism, Severe Insomnia, Asthma, Hypersomnia, Lymphedema, Chronic Fatigue Syndrome, PTSD, Scoliosis, Sciatica, Bone and Shin Splints and recently promised that I will soon cross the line and be diagnosed with Juvenile Arthritis. It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Psoriasis and Eczema now are hitting me harder than ever. I walk like a 96yr old woman and hurt so much worse. Only recently did my new rheumatologist pinpoint my last pain diagnoses as being Spine Arthritis, Psoriatic Arthritis, and RA. At long last I have found a home health company that save me pain and energy by coming to my house for appointments. It is ingenious and such a blessing! My new PCP is a brilliant and knowledgeable woman who actually cares for her patients! She wants us to live our best lives and works hard for it to be so. Thanks to her I now also have a pain doctor who CARES and is not afraid to help his patients live their most pain-free lives!!! He is SUCH a gem like her! It almost 18 years to find these blessed doctors. The biggest lesson I have learned is that my happiness is vital and if I have a doctor that isn't measuring up, drop them ASAP! Life is too short to suffer at the hands of others-especially when we are paying them to supposedly help us! It isn't worth it but YOU ARE! Finally in a place in my life where the future looks bright and I am excited for the challenges, as I know my health loves to constantly cause more pain and troubles like my Major Depressive Disorder, Psychosis, and Anxiety. I have been given a VERY complicated and Unique body that I choose to have as I know it better than anyone else. It is mine and we will learn to become a team though it may take a lifetime. I will never give up. No matter what I will fight on! Just as I have these long years, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And with The Mighty at my ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden. We got this!!!!
tierradrollinger23