A Zebra With the Heart of a Lion 

By Dawn Tucker, Guest Columnist 

Ehlers-Danlos syndrome (EDS) sucks.  There, I said it.  I have EDS Type 3 hypermobility and it hurts. I cry every day, sometimes two and three times a day.

I have dislocated various parts of my body due to collagen deficiency.  I have what is called frequent subluxations. My neck, shoulders and wrists have sprained for no reason other than I turned too quickly or took a deep breath.  I never knew why. I just knew people judged me and were critical whenever I mentioned the severity of my pain. 

My whole life (and I am 50 years old now) has been spent listening to others tell me my pain is all in my head, or that I am lazy or crazy. So I stopped telling people about it because no one wants to listen to a constant complainer. 

Instead I isolate and spend most of my time -- when not working -- in bed trying to get my body to cooperate with me.  It doesn’t.

I have three children and five grandchildren.  One son and one grandson also have EDS, and I cry because I know they will be judged and criticized by people who don’t understand. 

I once heard someone tell my son, “Something is always wrong with you.’ And I thought to myself, they could be talking to me.  I am beset with migraines, insomnia, dental issues, allergies, fatigue, irritable bowels, sprains, pains and aches.

I too have been told, “Something is always wrong with you.”

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And they are right.  Something is always wrong with me.  On bad days I want to give up.  Then I remember, I might be the only person my son or grandson knows, who truly understands their pain.  I cannot give up on them, even if at times I want to give up on myself.  

I try to be strong and do everything myself.  I hate to ask for help and I tire of arguing with people about my condition. Yet I know I will argue for my son and grandson.

In the last few years, I have made acquaintance with others who have EDS.  But I’ve met only two doctors that were familiar with EDS, so I took to learning more on the internet.  The internet offers a chance to get the word out about this condition. To let others know about EDS and the often painful associations because of this inherited disease. 

Medical students are sometimes told, “When you hear hoof beats behind you, don’t expect to see a zebra.” That’s why EDS is symbolized by a zebra. It is misdiagnosed, under-diagnosed or simply not considered.  

I am living proof that sometimes it really is a zebra.  I have no problem with being a zebra, but this zebra has the heart of a lion.  

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Dawn Tucker lives in Ohio.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Funeral for My Health

By Crystal Lindell, Columnist

I want to have a funeral for my health. I want to go abroad and throw its ashes into the sea while wearing a beautiful black dress and Jackie O sunglasses to hide my tear-stained eyes.

I want to take a week off work and forget to shower while everyone brings me casseroles. And I want all of my friends and family to acknowledge what I’ve lost with slideshows and poorly written eulogies that succeed in making everyone cry.

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I want to drink too much wine in a vain attempt to numb the pain, and maybe even take up smoking and a few bad men.

I want to sit around with lipstick stained coffee cups late at night telling stories about how amazing it was — my health.

How it let me lead so many youths on mission trips to far-off places. How it let me fall in love so many times. How it let me shower without pain, lured me into believing I would be immortal, and how it allowed me to travel the world.

I want to take all the time I need to figure out how the hell I’m going to live the rest of my life without it. How I will find love, be independent, and survive all of my physical limitations.

And I want the planet to just stop turning for one second while I catch my breath and adjust to the fact that world is a different place than it was.

The obituary would read as follows:

Crystal Sue Lindell’s health died after a 5-year long battle with her body. Her health was 34.

News about the loss came via email from her doctor when he confirmed her worst fears: She likely had hypermobile Ehlers Danlos syndrome (EDS) -- a diagnosis that meant that she would not only never get better, she would likely continue to get worse.

Her health is survived by her body, which will, unfortunately, carry on, in immense pain, despite the loss.

There is no cure for EDS, and as such, her health is completely dead.

She looks forward to seeing her beautiful health again one day in the afterlife, where she hopes it will be waiting for her among the stars.

In lieu of flowers, Crystal asks that donations be made to EDS Awareness, a non-profit online resource for the EDS community.

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Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

An Open Letter to All the Doctors Who Missed My EDS

By Crystal Lindell, Columnist

I hate you. I actually hate you.

Well, maybe not all of you.

But most of you, yes I hate. Actually, hate is too nice word. I detest you. I loathe you. I have venom in my heart for you. I hope your favorite show gets cancelled after a cliff hanger. I hope your air conditioner breaks in your car in July. I hope your crush never likes any of your Instagram photos. I hope every single time you go through the Taco Bell drive thru, they mess up your order. And I hope your phone screen cracks, your laptop crashes and you lose everything you ever saved.

I was recently diagnosed with Hypermobile Ehlers Danlos syndrome (hEDS), a connective tissue disorder that not only explains why my ribs always feel broken, but also why I’m always covered in unexplained bruises, why I sprain my ankles too often, why my vision changed for no reason, why my skin is baby soft, and why I crave salt.

And so many doctors missed it. And I can’t get it out of my head.

Like the doctor at Loyola who told me to stop coming to see him because there was nothing else he could do about my pain.

And the other doctor at Loyola who looked right at me while I was sitting on the exam table in just a paper-thin gown and said, “Well there are two options. You either woke up with a completely unexplainable pain, or you’re a great actress.”

I was so caught off guard that I didn’t even realize he was accusing me of trying to get drugs for like a full 30 seconds.

I also hate literally every single doctor at the Mayo Clinic that missed this crap. You know how easy it is to do an initial test for hEDS?

Doctor: "Can you bend your thumb to your wrist?"

Patient: "Yes."

Doctor: "Yeah, you probably have it. Let’s do a full evaluation."

IT’S THAT EASY!!!

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The Mayo Clinic missed it because they were obsessed with me going to their rehab clinic and getting off opioids, despite the fact that it wasn’t covered by my insurance and that they required a $35,000 upfront payment.

So yes, I hate all of you.

I also hate every single chiropractor I ever saw. Seriously, all you guys do is see people in pain, and it never crosses your mind to evaluate for EDS? Why are you not asking every single patient who walks through your doors if they can touch their thumb to their wrist? What is wrong with you?

Not to mention the fact that chiropractors have to be super careful with EDS patients, if they treat them at all, because things can dislocate and all that. It’s irresponsible of you not to be evaluating every single patient for EDS.

I also hate the pain specialist who berated me for not wanting a spinal cord stimulator. If he had evaluated me for EDS, he would have known that a spinal cord stimulator would have probably been a horrible idea for me. Like chiropractors, all pain specialists do is see people in pain. They should be evaluating every single patient they see for EDS too! 

The whole thing is so infuriating and frustrating. I sincerely wish I could go back to every single doctor I have seen over the last five years and personally tell all of them how much I hate them. And then I wish I could tell all of them to freaking check people for EDS. But I can’t do that. All I can do is write this letter and then try to move forward with my new life and my new diagnosis.

But if you’re a pain patient and you can touch your thumb to your wrist, get checked for EDS. Seriously.

And if you’re a doctor, do better.

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Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How I Started Telling People I Have EDS

By Crystal Lindell, Columnist

One of the first people I told about my new Hypermobile Ehlers-Danlos syndrome (hEDS) diagnosis was a local politician.

I was still trying to get a feel for how the letters EDS tasted on my lips. How they felt in my breath. How people would react when I said them. And truth be told, this was when doctors were telling me I probably had it, but before I was officially diagnosed — that came later.

He didn’t know he was among the first people I told — that he was a test case. But there we were, at a local Democrats meeting and he asked me about medical marijuana, and I decided to go for it. 

“I actually have EDS,” I said. “My thumb touches my wrist, want to see? Yes, marijuana should be legalized. No, it won’t help everyone.”

He had the response most people seem to have.

“Maybe it will get better?”

“It won’t get better,” I told him.

“Yeah, but maybe it will! Once, I was sick and then I got better. So maybe you will get better.”

“It won’t.”

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I get it. Nobody wants to really understand that being born in the wrong family is enough to sentence you to a lifetime of weak ankles and debilitating pain. It’s hard to understand that. It’s hard to accept that. It’s a lot easier to believe someone might get better.

It’s been hard for me to accept that. And harder still to say it out loud.

I have found though that it feels easier to lay the news on random acquaintances. The Tinder guy I met once. The woman who expertly bleaches my hair at the over-priced salon. The clerk at Walgreen's ringing up my pain medications.

There’s something to be said for telling random strangers something so overwhelming. It greatly reduces the consequences of your words — and of their reaction.

My initial instinct was to tell the people closest to me, my inner circle, first. But that quickly become completely overwhelming. Those people care way too much about me. They take it way too hard. It cuts too deep.

No, strangers are much better. They are morbidly impressed with my thumb to wrist trick. They are able to distance themselves from the depressing, long-term aspects of the diagnosis and ask horrifically, wonderful mundane questions like, “What does EDS stand for?”

And they never stop to think about what it might mean for my future. That’s my favorite part. Because the future looks very scary right now. And I need to do my best to stay in the present.

I have forced myself to pepper in the tougher conversations with the people who care about me. The late-nights over tears with my best friend wondering what this might mean for my future. Asking things like, what if I can never kids? And even if I can, do I want to risk passing it on to them?

Will I need assisted care sooner than most? How will I ever explain my health to future lovers? Why did it take so excessively long to get the diagnosis? How much of my life was wasted waiting for it? What could have been different if only I had known sooner? Will my siblings need to be evaluated? And what happens if they have it too?

All the things that fill me with grief and despair if I let them.

But strangers never ask questions like that. And even if they do, they don’t actually care about the answers that much. And I love that about them.

Eventually, hopefully, it will just become one more things about me. I’m blonde, I don’t like Trump, I love Burn Notice, I eat too much Taco Bell, and I have hEDS. It’s part of who I am, but not the whole part, or even the most important part. Just another casual fact in my Instagram bio next to things like, “I like lipstick.”

And no, I won’t actually ever getter better, but eventually, hopefully, I’ll get better at having hEDS and telling people about it.

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Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Finding Out I Have EDS

By Crystal Lindell, Columnist

It turns out pain has been running through my veins all along. It has been a part of my bones since the day I was born. I just didn’t know it.

I have recently been diagnosed with something called hypermobile EDS, which is a subtype of Ehlers-Danlos syndrome. Basically, my connective tissue is weaker than it should be.

It explains why I spent the last five years feeling like the bones in my rib cage were cracked. It explains why my legs and arms are often painted blue and purple and shades of Army green with bruises from injuries I have no memory of. And it explains why my ankles gave way so often over the years that I ended up with an entire dresser drawer full of beige ankle wraps.

It also explains why everyone who ever loved me would describe me as clumsy. And why I got tendonitis at such a relatively young age. It explains my vision changes and my “bad veins” and my soft skin.  

Readers have privately messaged me many times to get checked for EDS, but I thought it was too rare. I thought my doctors would think I was stupid or crazy for asking about it. And I didn’t think it ran in my family.

I was devastatingly wrong about all those of things.

And at every crossroad over the last few weeks, at every opportunity to find out that maybe I was overreacting, my worst fears were confirmed.

First by the osteopath, who asked if I could touch my thumb to my wrist, and when I showed her I could, said plainly, “Oh yeah, you could definitely have EDS.”

Then by my cousin, who herself has suffered from unexplained pain and health issues for years. When I asked if her doctors had ever thought she might have EDS, she replied, simply, "Yes, they have."

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Next came my mom, who I tried to avoid involving in all this for as long as possible, because I knew it would be harder on her than it was on me to find out I might have EDS. As she sat on the couch across from me, she scrolled through the list of signs and symptoms on her phone and then abruptly stopped.

“I think my dad had this,” she said.

A revelation. An epiphany of the worst kind.

Her dad. The man who died when I was 3. The man everyone always said spent his life dealing with unexplained pain. The man I was haphazardly compared to whenever I popped pills. The man who I had no memory of. It was him. He was the link. 

And then the dots just started connecting themselves. Like when you watch an eight-part Netflix show and it takes the characters until the very last episode to realize that the killer was in the house all along and you’re screaming at the TV to try to tell them, but they just don’t see it.

Then, finally, they see it. 

It turns out his mom likely had EDS too. My mom’s grandma, and my great-grandma, Hazel. The family lore is that she was diagnosed with rheumatoid arthritis at 26 and spent most of her life miserable and in horrible pain. I have now discovered that her RA was probably, at the very least, an incomplete diagnosis.

When I talked to her son, my great-uncle, I expected him to prove me wrong. To say something that countered my suspicions. But he did exactly the opposite. The last year of her life the doctors had told him that her body was like a bunch of bricks and the cement holding them together was deteriorating. EDS explained with a construction metaphor.

Even more heartbreaking was that he said all they ever gave her for her pain was aspirin. That’s it. Aspirin. And it did not help.

I had been hoping -- since it was so long ago --- that they were more generous with the pain medications at the time. That they had gladly given her all the morphine she wanted. But, as with so many things lately, the opposite of what I believed was actually true.

I told my pain specialist at the university hospital in Wisconsin about all this. And until the very end I hoped he would prove me wrong. That he would accuse me of being hysterical. But instead, he said simply, “Ehlers-Danlos Syndrome is a possibility, based on your reports and my prior examination. Best bet would be for you to come in for a visit.”

And that’s when I knew. That was all I needed to finally understand that the killer was in the house the whole time.

“Ehlers-Danlos Syndrome is a possibility.”

“Ehlers-Danlos Syndrome is a possibility.”

“Ehlers-Danlos Syndrome is a possibility.”

It played over and over and over in my head. I let myself think for a second. There it is. Ehlers-Danlos Syndrome is a possibility.

I scheduled a visit for March 15. And this week, after spending about 45 minutes bending me like a Gumby doll, he confirmed it. I have hypermobile EDS – or hEDS for short.

I am fairly certain that all of those wonderful, strong people out there who live with EDS will know how devastated I am by all this. And how sad it makes me. I cannot talk myself out of the grief I have been feeling. Because now, not only will I likely never get better, the odds are high that I will get worse. There is no cure, only treatments that manage the symptoms. And physical therapy to prevent others.

All I can think about is the doctor at Loyola from the very beginning. The one I first saw with shooting pain in my wrists five years ago. The one I went back to a few months later hoping to find answers for the new pain in my ribs.

The one who looked right at me and said, “Please stop coming in. There is nothing I can do to help you.”

The one who could have found this so easily, if only he had taken the time to look for it. The one who pushed me into piles of medical bills and doctor visits and nights with unexplained pain because he thought I was making it all up. Or at the very least, overreacting.

I want to go back to his office and show him what I learned. I want to yell in his face, “IT’S EDS! I WASN’T BEING CRAZY! I WAS IN PAIN!! I NEEDED YOUR HELP!!!”

And then I want to cry. Again. Because crying seems like the only appropriate response to all of this right now.

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Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How to Successfully Use Manual Therapy with EDS

By Ellen Lenox Smith, Columnist

There are two types of physical therapy to consider. The traditional type includes ice, hot packs, ultrasound and exercises. With this type, the physical therapist is not touching you.

But for those of us living with Ehlers-Danlos syndrome (EDS), the second type of physical therapy, called manual therapy, is much safer. You lie on a table for a hands-on approach, and the physical therapist has specific techniques to reduce the muscles spasms and realign the bones through touching the patient. It’s similar, but not the same as massage or a chiropractic adjustment.

In EDS sufferers, when our muscles go into spasm, we feel a lot of discomfort and pain, and our joints can shift out of position, causing what is called subluxations.

Even simple tasks like sleeping in a bad position or picking up groceries can cause this. Our poor muscles spasm easily because they are overworked from taking on the job of our ligaments and tendons, which are weakened by our collagen disorder.

We need to realign the joints and return them to their correct position, which then reduces the muscle spasms.

When this is done by a manual physical therapist or chiropractor, then exercising will not hurt so much. Treatment of the muscles repositions the joints and calms the muscle spasms down.

But you also need to understand that your muscles will return to those spasms if another step is not taken after manual therapy.

You need to do specific exercises to strengthen the muscles that were causing the problem. If you just put the joint back into position without strengthening the muscles around it, you will leave the joints weak and susceptible to the same forces that could pull them back out again. If you strengthen the muscles, the joints will not shift out of position so easily. The exercises should begin as soon as the manual therapy appointment is over.

Also, when you have any cranial or myofascial release work done, the process literally puts your muscles into a calmer, sleeping mode. Before leaving the office, you need to reactivate and wake those muscles back up or you will find your joints will potentially slip back out again.

I went to manual therapy for years and never understood why I kept slipping right apart. I would walk out feeling so relaxed and calm and then, sometimes in the car ride home, things would start to shift out of position. Now I take a few minutes to wake up and reactivate the muscles and find the body will hold much longer.

This is a simple procedure that your provider should be able to show you how to do. It makes all the difference in the world. I recommend Kevin Muldowney’s book, Living Life to the Fullest with Ehlers-Danlos Syndrome for proper guidance on these exercises.

Strengthening the muscles is a must after manual therapy or the spasms will return. If you fail to discipline yourself and do your exercises, you can’t expect your provider to develop and assist you in executing a successful treatment plan.

It reminds me of the time my neck was fused. On day three in the hospital, I received an email of instructions from my surgeon. He clearly stated that he had now accomplished his job with the surgery and it was up to me to get out of bed, start walking, and take on the responsibility of helping myself heal and strengthen. It is often difficult for us to accept that we bear the lion's share of the responsibility in any successful treatment plan, but we do!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Pacifist: A Poem About Pain

 

"Pain Pacifist"

By Angelika Byczkowski

 

Pain warrior no longer,

I surrender,

give up the fight,

become a pacifist.

Pain is far too big,

too strong for me

to stand against,

curb or contain.

 

It spills over

the edge of my meds,

trampling barriers

of mind eroded

by long-sustained

assault, it gives

no pause, no rest,

no redemption.

 

I'm worn down,

too exhausted

to continue this

unending battle,

fighting my own

invisible torment,

running wild in

this broken body.

 

Dreams for the future

lie shattered, love

of life destroyed,

lost to pain, and

the way ahead

looks even worse,

I change my route,

try something new.

 

I declare a truce,

one-sided, still

it brings me moments

of gentle calm,

when a window

opens briefly,

gives me a glimpse

of possible peace.

 

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various 4-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

Pain News Network invites other readers to share their stories (and poems) with us. 

Send them to:  editor@PainNewsNetwork.org