By: JANA GREENE
Hello, Dear Readers,
May is Ehlers Danlos Awareness Month, so I’m … um… spreading awareness. I saw a meme the other day that referred to it as “Bendy B*tch Disease” and I laughed so hard. BBD! But there is a whole lot about living with this condition that isn’t funny in the least.
A few of my friends have had questions recently, and I thought I’d use this platform to educate about Ehlers Danlos Syndrome and its related comorbidities. And y’all can ask me anything, I don’t mind answering questions! (Please keep in mind, this article addresses my own experience with EDS, and it can manifest differently among patients. Please consult your doctor for correct diagnosis and treatment option pertaining to you as an individual.)
Can you develop the syndrome over time?
No. Most of us suffered for years – sometimes decades – without a correct diagnosis because symptoms can seem obscure. And the medical community tends to think of horses when they hear “hoofbeats” (i.e. causes of injuries and illness,) and not zebras. Which is why the “mascot” for this condition is the zebra. It is 100% genetic. You cannot ‘catch’ it, develop it (although you can develop more obvious symptoms,) or “cause” it in any way, shape, or form. We are born with it. Genetic and clinical testing is often required for accurate diagnosis (do a search for the “Beighton Score” for further explanation.)
Can holistic approaches cure Ehlers Danlos Syndrome?
No. Although I do love holistic remedies and believe in their helpfulness in many ways (and I try to treat my overall health with eating clean when I can,) the truth is that I require many Rx medications every day. Each one has proven itself necessary, as I have tried at different times to stop most of them at one time or another, with disastrous, sometimes life-threatening consequences. So, I’m a big fan of natural medicine, but a bigger fan of survival. I hate that Big Pharma is a big part of that survival, but it is what it is. Part of my constatation of illnesses show up in that my body cannot do the things your body does automatically. My unmedicated body cannot control my blood pressure, temperature regulation, heart rate, or digestion – as I have gastroparesis, which is paralysis of the entire digestive tract, which is why I’ve lost 50 pounds in a short span of time, and why I’m malnourished (which causes even more symptoms and pain. it’s an awful cycle.)
What do you use for pain management?
Ice packs. Voltron. Tiger Balm. And tears. Oftentimes, the course of pain management for my condition and the severity of it, can be opioids. That’s how brutal the pain can be. I have seen pain management doctors, who put me on CBD oil because other than opiods, there are not too many meds I can add to my already-vast Rx repitoire without complicated side effects. I’m glad CBD works so well for some folks, but it may have well been snake oil for me. I cannot (rather, will not) take opioids, as I am a recovering alcoholic with 22 years sobriety and taking opioids would be extremely risky for me, addiction-wise. I do take cannabis gummies – and honestly, because I take the totally legal kind, they help but only so much. I long for the day cannabis is legalized so I can achieve better pain relief. Truly, people, it’s medicine God himself planted in the dern ground. Its medicinal properties are scientifically proven. So, legalize in it my state already. Okay, off my soapbox.
How come you dislocate and subluxate your joints all the time? Because I’m a super-athlete. JUST KIDDING! Because completing everyday tasks can be like running a triathlon for a healthy person. We tire easily. Subluxations are just partial dislocations of joints – mild or incomplete dislocations. And they happen all the time. Every day, something on my body subluxes; it’s just part of my reality. Our ribs can sublux due to coughing or sneezing. Barfing is the worst for subluxing ribs. My left thumb shifts out of joint at least twice a day. Braces – elbow, wrist, knee, ankle – you name it – are a part of our everyday existence. Every morning I take a “pain inventory” to help me know what needs to be braced for the day. I have a vast collection of braces for my joints and it’s a rare day I don’t need any at all. Speaking of EDS stability paraphernalia….
Why do you use a cane sometimes and other times, you do not? Because some days we “flare” worse than others, and also because many of us also have Postural orthostatic tachycardia syndrome (POTS), which causes dizziness, and a cane is a good stability aide on unstable days. There are days I don’t use my cane at all, and there are days I can’t walk to the kitchen without it. This will, unfortunately, worsen as I get older, and as my joints become less stable as well. That’s the bugger about this condition – we will not improve as our bodies age. Wear and tear on the joints from everyday life will become more prominent. (PS: It’s an unfair assessment to pass judgement on someone who uses a mobility aide only on “bad” days. One day, we need help getting around, and another, we can walk upright unaided.)
Have you tried yoga?
*Rubs temples*. Yes, I have. Ended up subluxing my hip. Different patients have different opinions on yoga- from what I’ve experienced and been told, is terrible for people with my type of EDS (Hypermobility Type III) because our joints are already ridiculously loose and stretchy. Bending them more in those positions only increased my pain and caused damage. Our joints are too lax already.
What is a “flare” and why are some days worse than others?
According to that Big ‘Ol Brain in the Sky – Google – it is explained thus: “The term “flare” can mean several things, but could be increased pain, GI distress, MCAS reactions, dislocations, subluxations, cardiovascular challenges, dysautonomia symptoms, insomnia, fatigue, brain fog, a sense of being “wiggly” or dangerously clumsy and more.” And easier way to think of it that my dashboard lights go off at once. ALL SYSTEMS are “off.” Flares can result from being sick (with a virus or other, and that’s constant, as I also have a degree of immune dysfunction,) being over-tired, pushing past my limits, or not sleeping, eating gluten, and about 50 other possibilities.. Flares are miserable beyond words, and you feel like you will never feel decent again. EVERY time, so severe flares are also pretty good at triggering depression. On our “good” days, it is natural to want to do ALLTHETHINGS, because we never know when our pain will be manageable again. So, we push past what we should, often resulting in – you guessed it – another flare. Supremely frustrating.
Have you consider EDS may be caused by childhood trauma?
I believe the mind, body, soul connection is imperative to consider. But to me, this, to me, is an old spinoff on the question: “Is it all in your head?” Although I do have significant childhood trauma, Ehlers Danlos has zero to do with it – other than the fact that I was constantly injuring myself doing the simplest things as a child and was considered “clumsy,” not having had any idea what was wrong with me. Also, the emotional days can contribute to overall flares, just like any other trigger. I have – thank God – worked on my trauma through several years of therapy, and I will probably go to therapy for the rest of my life. I will goto therapy forever -not because of the trauma – but because my therapist gives me tools to deal with the fact that I am losing mobility slowly, must deal with awful pain on the regular, and not being able to do the things you want/need is depressing, frankly. My therapist imbues me with hope, coping skills, and encouragement. I am not going to get “better,” (barring any unforeseen miraculous new treatments which may come along due to increased research, which is why I am spreading awareness. Here’s hoping!)
In conclusion, thank you for asking questions, my friends. I will answer them as best I can! Ehlers Danlos Syndrome is a spectrum just as many conditions present. Some people with it lead normal lives and just experience a little pain here and there. But for some of us, it’s debilitating and progressive. And we need the compassion and understanding to thrive through chronic illness and pain.
Blessed be, Readers. Til’ next time,
One thought on “Ehlers Danlos Awareness Month – Q & A (Part 1)”
So informative and so awful Also so powerfully written grateful to be more fully informed love alice