by Tiffiny H
While filling out a personality survey on a dating website recently I came across so many words that I rank myself high on: ambitious, athletic, active, adventuresome. I stopped midway because I’m just don’t know how to describe myself anymore. What I was, what I want to be, and what I want to do has radically changed over the past five years as I near 50.
I always thought my flexibility was a good thing and on occasion, as a kid, my contortionist moves made me pretty entertaining. My childhood friend, Joanne, used to call me “no bones” as a nickname. I cracked and popped all my joints without trying. It’s like the rice crispy commercial…snap, crackle, pop all the time! I’m the star in the limbo contest at Susan’s annual New Year’s Eve party (which after a few drinks I still do against my better judgment). It was amusing.
Not being diagnosed with Ehlers Danlos until much later in life, I stayed very active, but I knew my limitations instinctually. It always hurt to run or any high impact sports and activities. I stuck to working out with weights at the gym and when I used the cardio machines I switch machines every 10-15 minutes to save my joints from hurting. This extended my ability to be active and I powered through the pain and treated each health complication as an isolated case. I was physically strong, fit, ambitious, and most of all, tenacious.
I worked full time while being a very young single mother and put myself through college through to a master’s degree. I kept up that pace for years. Still single, I had my second child in my late 20’s, bought a house, fixed it up and reached any goal I set. I was a great mom…never missing a dinner on the table with my kids, school events and headed up many camping trips and family barbeques. I always dreamt of traveling abroad and through my hard work was able to take my kids backpacking around the world with a 50 lb. backpack on my back! No one could stop me!
My tolerance to pain was pretty high, but eventually, simple activities became more and more difficult in my late 20’s…going up and down the stairs in my home, holding yard tools, sitting at a desk for any length of time, but no doctor could explain it. At 30 years old I even had my silicone breast implants removed because I thought this was the source of my joint pain. Because there was no explanation, I really thought it was all in my head…that everyone must feel this way all the time and I must just be weak or something. I just needed to be stronger! When I would tell people that my feet, ankles, knees and back hurt when I ran, my other friends said they had pain too, so I ran a 5K run next to them on the pavement. I remember thinking, as the back of my skull felt like it was crashing down every vertebra in my neck, that I must need new shoes. And man, was I great at yoga, despite frequent joint subluxation.
I had been going to doctors for headaches since I was a child and eventually chalked it up to TMJ. A burning sensation in my muscles after holding any potion standing or sitting or after vigorous activity (muscle spasms) was diagnosed as fibromyalgia in my early 30’s, but I paid no attention to that, I just modified my activities. Even being young and healthy, I had complications in my pregnancies, but I didn’t mind the very quick labor. Doctors started recommending a hysterectomy in my late 30’s due to painful endometriosis and pelvic prolapse. I went to physical therapy instead and tried endometrial ablation instead without success. I powered through as usual, after all, I was always working toward the next goal: buying a duplex, graduate school and couldn’t take time off work. I developed an allergy to NSAIDs at 40 yrs. old from massive amounts of ibuprofen I was taking.
Pretty soon it became intolerable. At 45 I felt like I hit my expiration date. I had surgery on my shoulder. There wasn’t one tear from an injury on a ligament, but they were all just frayed unexplainably. Soon after, my hip became incredibly painful…dealt with that for a year, then my knee, and so on…one MRI after another with no explanation. Heart murmurs, dizziness, fatigue, loud static in my ears (especially after I walked) …all just weird. One day after an easy one mile walk with my girlfriends I was down for a couple days due to back pain, and then it happened again, and again. It wasn’t just my ankles and knees that hurt. I couldn’t move for days after, so there’ve been no more walks in the neighborhood with my friends for me. I was missing work and when I was working only part-time, I was taking a muscle relaxer to tolerate sitting at the desk for more than a couple hours. But in true form, I powered through and changed career and started selling real estate because that gave me enough variation in physical movement and flexibility in working my own schedule.
I went to specialists for years; orthopedics, rheumatologist, tropical disease specialist, gynecologist, naturopaths, optometrist, otolaryngologist, cardiologist, but nobody could explain the “migrating joint pain” and other symptoms. When I was 46 and decided to go to the chiropractor again. He commented on how easy my joints gave way. He did the hypermobility tests and because I went to middle school with Dr. Jason, I shared my stories of being super flexible with humor. He took it a little more seriously and printed off some information about hypermobility and advised me to talk to my doctor about it. My doctor then referred me to a geneticist and it finally all made sense at age 46; hypermobile Ehlers Danlos Syndrome.
I felt validated, angry and scared. The body I powered through life with was falling apart…literally. Did I just hit my expiration date?
Even though pain is something I lived with for years, the symptoms have been accelerating at a very quick rate over the past five years. I can no longer go up and down stairs frequently. I tried working a job recently (since real estate is slow in the winter) that required stairs and my Achilles tendon on both feet paid the price. Aside from that pain, walking more than a few blocks hurt my hips and knees and it jarred my spine so much that I definitely better be walking to a bar. My hands can’t handle writing more than a few sentences; filling out forms at all the doctors’ visits is so painful! Cooking a meal (which I love) or standing for any length of time requires several breaks flat on my back. When all my muscles relax too much while sleeping my joints are stressed even more and it wakes me throughout the night in pain. I’ve even had a rib pop out of place while sleeping (thankfully my ex-boyfriend was there to pop it back in). Some days or some weeks are better or worse than others.
Is it getting worse now because I pushed myself so hard when I was young? Did all the yoga cause way more harm than good because I didn’t realize I shouldn’t fully extend? Is it because of the hormonal changes as I go through menopause…a blessing or a curse? I have no more painful periods but everything else hurts more. I received acupuncture, I take supplements, recently started hormonal therapy and have found that receiving Prolotherapy in my joints helps considerably. Prolotherapy is only temporarily for those of us with collagen disorders and is not covered by insurance so it adds up when getting treatments all over my body repeatedly, but it’s been a lifesaver to cope with this degenerative disease.
I moved from Oregon to be in a warmer climate near the sea and now live in the Caribbean. I enjoy swimming in the warm water, prolotherapy is cheaper here, and most people would love to just chill, killing the pain at Sundowners Beach Bar watching the sunset every day. After all, alcohol does help my pain at the end of the day and I won’t take opioids. But, I’m just not the same Tiffiny I used to be, that people expect me to be, that I want to be. I want to stay busy. I want to start a business, but I have a deep-down fear that my body won’t hold up to my ambitions. I want to date, but fear that my physical limitations will kill the chances of that. I tried dating someone as broken as me and that was a disaster. I look healthy, am still physically attractive and still Tiffiny; ambitious, athletic, active, adventuresome and active, that wants to tackle any goal despite all odds. But I can’t keep up with someone who is the same. I turn 50 this year and want to accomplish and enjoy so much more in life!
Shortly after I was diagnosed I made friends with another ambitious strong EDS woman just a few years older than me that gave me many of the great tips for treatments to cope with EDS. I would like to pass on the same advice for treatments that my friend gave me to other young ambitious women, including my daughter: take vitamin supplements, continue low-impact controlled exercise to keep muscles strong, use treatments (like massage or a tens unit) or modified activities for muscle spasms, and when it’s needed, explore other options. There are many other strong women like me that push through the pain and won’t give up. So, moreover, I hope research can find the genetic cause so that a potential cure may be made available, so other tenacious women can keep conquering their goals and not have to slow down before they are ready! I won’t accept an expiration date on quality of life!
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