Rebecca's Hypermobile Journey
I had shingles for a week before I knew it. “It isn’t that much worse neck pain than usual” I told myself. “It’ll get better.” But it didn’t. Even my hypermobile neck could not owl enough to see the bubbly rash on the backside. When you are used to daily pain you question how bad is too bad. When do you get checked out? When do you go to ER?
My life story is one told best in heating pads, ice packs, too many ibuprofen, and various types of support braces. I looked like a normal kid. In elementary school I had stomach issues and food intolerances. By middle school I had spent weeks on crutches and became a pro at ACE wraps. In high school I had a total body rash reaction to the swimming pool chemical. The chairs made my low back hurt all day. I started seeing a chiropractor for scoliosis and back pain. My mom took me to be checked out but nothing serious was ever found. I was teased for always being cold despite numerous layers of clothes which was blamed on possibly being anemic. I injured myself out of every sport I ever played.
Everything got worse in college working at a coffee shop. (I continue to be the best at making extra foamy lattes). Wrist braces on both arms barely touched the throbbing and deep ache from my thumbs to elbows. Ibuprofen might as well have been TicTacs. Even my custom purple wrist brace barely helped. I was told to be patient, that tendonitis takes time to heal.
Tonsillitis that turned into mono left me mostly homebound for 6 months. A football player size neck and thoroughly exhausted, I powered through still at the coffee shop because I didn’t want to admit how hard it was to function. My arms were not as bad but I had no idea why (maybe they were right after all?). But later I returned to tearfully icing them nightly wishing the pain away. Leaving the country to study abroad then backpack Latin America was what ultimately helped because I no longer used my hand for work or college. In hindsight the heavy backpack was not ideal.
Nursing school came next and was hard with the supposed panic attacks. They never made sense. While my life might have sounded anxiety ridden and stressful, I was not always anxious. But I’d go weeks hunched over trying to get the air into my lungs better. Asthma inhalers made no difference. No one brought up that ribs can slip and mimic asthma or panic attacks. A clinic nurse was worried when my heart rate at a vaccine visit was 120 just sitting there, and kept checking on me (hint: not anxiety, think POTS).
Just relax, rest, and get some exercise to destress
When I had kids many years later my mom predicted I could not handle childbirth due to my supposed low pain threshold. This was still many years before I knew about hEDS but my reaction was “At least I get a present after this pain and there is an end point.” I still agree entirely. It was just as I predicted; painful with an adorable present and endpoint.
The wrist pain from years prior returned with a vengeance, now so severe it crawled all the way to my shoulders and no amount of medication helped. It was painful to hold my baby. I needed deadline extensions in graduate school due to my physical inability to use my arms any longer. Why was my body was failing me. I ate well, I (kinda) exercised, I had stress, but who doesn’t? I finished my nurse practitioner degree and excitedly started as a primary care provider. It took another a decade and meeting the right surgeon to improve hand and arm symptoms (and another purple hand brace).
A few years later at a clinic I had the biggest ah-hah of my life. A handout given to me by a spine doctor about hypermobility explained my entire life. My life was boiled down to 16 pages.
I am not a hypochondriac…
My physical therapist insisted on a spine consult. “We keep chasing symptoms and they change or they don’t get better.” The spine doctor did what they must do many times a day, conduct a hypermobility Beighton scoring during which I proudly showed off my natural talent for yoga. I had no idea others could not touch their thumbs to their wrist or put their full palm on the floor.
My mom and grandma were dancers who could do the splits into their 50s so being flexible was normal to me. On the way out he handed me the life-changing packet about hypermobility. That was my introduction to the complexity of connective tissue, that mine was not in fact holding me together well, and that it affected every area of my body. A random handout like so many before. All his follow-up tests were (of course) normal.
I wanted to be the female Sherlock Holmes my entire childhood and started college with a focus in criminal justice. With the enlightenment of my own hypermobility, I dove into medical databases my nurse practitioner license enabled access to. (No, I recall nothing from my many years of training about hypermobility, POTS, MCAS). Internet deep dives were not as helpful for hypermobility and Ehlers Danlos back then. I found the related diagnoses of Ehlers Danlos. Now of course I (naturally) thought I might die, leaving a little kid, grieving family, and student loan debt.
Armed with my research I went to my Primary Care Provider, a nurse practitioner who I knew through work, who had never heard of Ehlers Danlos. I told her I thought it was actually hEDS. She listened and sympathized (I was lucky). We worked our way through the legitimate diagnostic workup with autoimmune and cardiac testing over multiple visits. (this was pre-2017 with the streamlined diagnostic criteria). My PCP emphasized that I needed to get life insurance before any diagnoses were official.
We arrived at Hypermobile EDS as my true diagnoses. The validation was surreal. I had a name for it, for all the gaslighting by medical providers, dismissal by my family, and my diminished self-trust in my body.
It was not in my head after all. This is real.
But now that I had a name there was no one to help me. Until I was an adult, I had not known that everyone else did not have daily pain. I felt as if I was starting life over (or the end of all I knew). Was I disabled? How long could I work for? What was the long-term outlook for me? I was lost, hopeless, and depressed. The internet led to scary places.
My life reads much like other hypermobiles who have been taught to distrust their body’s signals and subsequently power through pain and suffering. Providers do not know what to do with us when our list of symptoms checks over 50% of their screening questions. “Pick your top 3” they say, “Where bad is the pain?” To which we (sarcastically?) reply, “would you like that top to bottom or alphabetical?”
I had a kidney infection from a missed UTI because “it was just worse back pain than usual.” By the time I went to clinic I was 103° with a kidney abscess and sent to ER. Again, I had powered through convinced that my body was just confused again. I beat myself up, “How come I didn’t connect the signs?”
It was hard to trust my body…
Food reactions added fear to the equation, and foods that I previously ate often would now trigger hives, pain, and stomach cramps. “No that’s not a thing” doctors said. My PCP, now clued into oddities ran a food intolerance (not allergy) test that validated foods I should avoid. (How did my teen years revolve around Cup-A-Noodles and Cheez-its?)
Like most with hypermobility I dutifully went to physical therapy because I knew from years of training it fixes most problems. Yet sciatica down my right leg lasted for 6 years despite 4 years of physical therapy. I lived in a SI belt 16 hours a day and chose outfits to try to hide it. To this day my hips have a dent from the belt overuse. Other people do not get hurt having asymmetrical sex or wake up with their elbow popped out yet again.
I must be missing something…
Trying to trust my body again I had a hip consult where he described my “deep cavernous and hypermobile SI joints.” (read: big, open spaces with loose joints) I was eligible for fusion but first needed a SI steroid injection to ensure it was the right source of symptoms. From an old CT (ironically from the kidney infection) a new detail-oriented ortho pointed to my SIs saying, “Those are not normal. Years ago, they missed one test.” A fancy lab with a 10 nerve wracking days processing time and MRI later, I also had an autoimmune bone fusing disorder called Ankylosing Spondylitis.
The humor of being hypermobile and having a bone fusion disorder! Both hEDS and AS cause low back pain with sciatica and chronic neck pain. I believe the years of hEDS stress on my body combined with high chronic stress career activated the gene I carried for AS. I do not dwell in the past if the hEDS had been found sooner or if I hadn’t had prolonged mono I could have avoided the AS. Somehow, I am still an optimist, a brutally honest optimist. (Somedays it surprises me too). Plus, the SI injection resolved enough of the sciatica life was livable sans SI belt (miracle!).
I became a seasoned professional patient…
“Professional patients” like me will tell you that your symptoms ebb and flow. There are times when pain is lower and you get excited about the possibilities (and *might* overdo it), then the times that it is worse and freaks you out. We are all at different points in our journeys, and the journey of discovery never ends.
As my hip got better my neck became much worse. The AS was blamed and immunosuppressants were started, but no improvement after months led me multiple new specialists (and new diagnoses: Thoracic Outlet Syndrome, Cervical disc issues). My head had felt too heavy for my body since high school but this was tipping me toward no longer being functional. I was mad, sad, scared and exhausted. One year later despite PT and injections a huge herniated disc sat on a nerve in my spinal column. “Wow it is really bad” said my surgeon looking at the MRI. At age 40 I became the proud owner of two fake discs complete with “teeth” that keep them from hypermobile slipping out of place (thank you technology). Becoming more bionic is one of the potentials with hypermobility or EDS.
Years ago, I had no idea that there were others suffering like me. All going to different doctors, specialists, PTs and all broken to some degree. Jokingly and yet some truly held together by compression thigh high socks and kinesio tape.
Only recently did I allow myself to become vulnerable sharing my hypermobile story and struggles. Was it the two herniated discs with double disc replacement that pushed me? In reality it was the need for connection.
In our connection there is strength…
I struggle despite all the knowledge, resources, and minimal gaslighting due to my profession (yes I name drop). While I loved feeling like the one genius PCP understood hypermobility and EDS it is not fair. I have the expert knowledge because I have it, our struggles are similar, and I do daily detective work in this disease. The more you do something you love the better you become at it. Lots of brain research supports that.
The online EDS community gives me comradery and community that I am not alone in this broken body experience. The downside is the potential to absorb others struggle stories, get bogged down in comparison traps of those “who have it worse,” and overwhelming opinions on options. It’s hard to read the rants about not getting help that is necessary and deserved.
You have been gaslit ...
I am not afraid and do not avoid telling patients that other providers do not have a desire to help EDS or that their schedules do not permit the quality or quantity of care that hypermobile folks require. We went into this caring profession to help but providers and systems have huge limitations. This is particularly true for neurodivergent people, melanated groups, queer folks, and those with mental health challenges. Statistics depressingly emphasize that if you are in 1+ of these groups you do not get the care you need (and deserve!). I apologize for my profession. This is unacceptable and wrong.
“So that is a hypermobile or EDS thing” is one of my favorite things to say to a newbie hypermobile who brings up random symptoms. The 14-to-24-minute standard office visit does not do you justice because summarizing your top 3 concerns without bringing up the other symptoms does not lead to seeing the big picture.
You deserve more…
More knowledge about how MCAS, POTS, Dysautonomia, hEDS, and numerous other areas are all connected and manifesting in your body. More time. More fun. More joy. More connection to those who can help and understand. You have lost some of your ability to trust your body and instinct. You crave connection to a group of people who understand your life, its chronic nature, and do not belittle it. I do too.
You need to know that rest and an unproductive day is not a sign of weakness. Your value as a person is not determined by your productivity. Really. Louder for those in the back (and myself).
Your value as a person is not determined by your productivity…
If your body is yelling at you, then you should pause and listen instead of powering through (even if results are normal). Just because a lab, xray, MRI or other test is “normal” or “negative” does not mean that the symptom and suffering only exists in your head. (shudder). There is something wrong. Standard validations tools are not up to date for your body. Science is behind the times. You do know your body.
I believe you…
You are not rare to me. I feel strongly that EDS is massively underdiagnosed because providers do not know about it or avoid it feeling as if it is out of their territory. “It is like you can see into my life!” Hypermobiles who tell me. (Takes one to know one). Not formally getting diagnosed with Joint Hypermobility Spectrum or hEDS is gaslighting and keeps us stuck.
Hypermobility is what I live and breathe personally and professionally. My personal care team is made up of a PCP, 3 Orthos, Neuro/Spine surgeon, Naturopath, Neuro/Dysautonomia, Rheumatologist, PT, OT, and hand surgeon. I am a complex problem solver, ever expanding my knowledge with new research, which I apply to past and present patients. The more patients I see with hypermobility the more I know.
It doesn’t have to be so lonely…
Since you found me you likely are on this hypermobile journey too. Having the unique experience of being a patient and a provider I combine true understanding with my medical detective skills that enable a transformation. We deserve a life with less pain, less fatigue, and the ability to regain trust in ourselves and our bodies.
Being hypermobile there is no linear line of improvement. We evolve on our hypermobile journeys from enlightened but lost newbies, to determined and occasionally depressed intermediates, to seasoned professional patients. It does not matter where you are on your journey, I have ideas and maintain hope that you will feel better living with a complicated disease.
My vision is a provider in each state who specializes in hypermobility and EDS, trained in my framework, operating under The EDS Clinic umbrella. We must make finding knowledgeable providers less complicated and standardize normal and creative options while adapting these to each unique body and situation. Here we value self-trust, health, connecting, and knowledge.
I am told I’m intense. I love what I do and it shows. The safe word is pineapple (for real) if you need to reduce my intensity in whatever way you need.
Childhood me would love that I became the Hypermobile (medical version of) Sherlock Holmes.
You are not alone.
You are not hopeless.
I have hope for hypermobility.
We can do this together.
*The packet was the classic by Dr. Pocinki which I still use. HERE it is for you.