I wish there was a way to let people know "you should look for all these weird symptoms" and "If you're finding that all these strange things are happening to you - you MIGHT have Ehlers-Danlos Syndrome" - while the EDNF site is really good, much of the symptoms listed are just medical terms,and not necessarily things people can relate to.
I know there's a lot of things MANY of us have, but it doesn't seem as if doctors have 110% connected it to our EDS.... like Keratosis pilaris (red bumps on your skin on your arms and legs most often, which can appear purple when you're cold - it's common among EDSers). I'm trying to catalog all my problems from head to toe...I hope it will help my doctors (I'm planning to give it to them), plus, I'm hoping you guys reading who suffer from EDS can help do the same, so we can make a generalized "If you're noticing that you have a large number of these problems, you might want to talk to a geneticist."
Here are the things I've come up with from a thorough evaluation - but this list isn't complete and I'm sure I'll be adding things as I remember them.
My EDS related symptoms - from head to toe - starting with things noticed when I was a baby:
As a Baby:
-I was born with hips that seemed to have no natural stop - they were extremely floppy and could bend in every direction. By the time I could stand, i could and would often rotate my legs inward almost 360 degrees. I can STILL do this.
-I was very ahead of my age physically. I never needed my head/neck supported as an infant bc i could hold it up myself. - as a baby, I had incredible strength and could hold my head up and do push ups. I stood at four and a half months, pulling myself up, and then walked at barely over five months.
-(I've noticed a large number of these things in my son who is now four - he was incredibly ahead- crawling from the foot of our bed to the head at only 13 weeks - and the day he was born, he could lift his entire top-half into a push-up position and look ALL over the room, holding himself up for minutes. It freaked out the OBGYN so badly, he at first thought the baby he was seeing in our room WASN'T the one I'd just given birth to downstairs. He called in over a dozen people to witness the super-human baby whose head/neck and arms were SO strong.
-I was always a very advanced learner. Spoke in full sentences before 18 month, was reading full books by three,
and chaptered adult books by four and a half. I was offered to skip multiple grades in school (but passed to stay with my friends).
-I was VERY clumsy as a kid, with horribly toed-in walking, I tripped over my own feet often and they tried to put bar-shoes on me, but had to remove them because I walked so young.
-As a child, I always felt like my joints were SUPER loose, and I always felt like just sitting up /standing in line, etc was EXHAUSTING. This has only gotten much worse as I've gotten older.
Head / Hair / Brain:
-I'm a natural red-head with fine skin and freckles, which seems to be pretty common in EDS type-3. I've seen a LOT of red-heads.
-Accelerated Hair growth (my head-hair grows nearly 1.5" a month)
-Thin, fine, limp hair with a permanent part no matter what I do - my hair won't hold a perm, and resists dye. (This could be because of my red hair)
-Brain-fog, short-term memory problems with functional things- like I can't remember if I did something, or WHEN I did something. It's like my body doesn't remember what it's done. HOWEVER...
-I have incredible long-term memory - I can even remember many things that happened when I was just 8 months old in detail.
- I have an Eidetic memory for things I read and see. I can flip through a magazine, and then tell you what page the razor ad was on, or almost repeat an entire article word for word.
(For example: No one has EVER beat me at that bar-computer game where an image flashes, the faster you touch the screen, the faster the picture goes away, and then it asks you a bunch of questions about what you just saw - like how many spoons were on the table, or how many people were wearing sunglasses - to date, I've never gotten a single question wrong because my mind forms a complete photo almost instantly of what I saw, and I can recall it in incredible detail)
- I read incredibly fast and can type over 165 wpm
-ADHD symptoms that started in middle-school with impulse control issues, inability to sit still (which i still think was due to pain/discomfort/always looking for a more comfortable position - not necessarily hyperactivity)
-Oddly, I've almost never had a head-ache in my life, save a few times when I was really sick and had sinus pressure. (I realize how lucky I am).
-I have keratosis pilaris on my upper arms, thighs (above my knees on both upper legs) and along my jaw line. It causes the pores to get plugged up and red bumps. On my face, it causes bumps almost like acne but it's clearly not.
-I have a horrible time with picking, especially at my face because I cant stand that just washing/exfoliating doesnt clear it up, so I often pick, poke, squeeze, etc. The doctor can tell me all he wants that it makes it worse, but I cant stand having anything IN my skin.
-I have VERY fine blonde body-hair that's totally unnoticeable and almost invisible. As I hit my 30's, this fine peach fuzz has shown up along my jawline, my upper lip, and below and around my mouth - where the plugged skin is worse. Even though it's all but invisible, I've found that shaving it can help exfoliate the skin and does help.
-I soak in Epsom salts and exfoliate with apricot-shell and loofah oatmeal soaps which help reduce the keratosis pilaris.
-An illumask from Walmart REALLY helps with my skin on my face, to reduce redness, and Lotrimen (not because it's a fungus, but because the medication helps to break down the keratin plugs that form under the skin), and breaks down many of the painful lumps before they begin. I HIGHLY recommend this combination!
- I've never needed glasses, until my 30's - because my night vision and depth perception have become awful, very rapidly.
- I am red/green deficient from a head injury that happened when I was playing soccer at 13.
-I have floating spots that started when I was 31. Nothing is wrong with my eyes and doctors have yet to get an answer to why. It gets worse and then goes back to a minor inconvenience, but it never totally goes away. The spots seem to remain in the same spots, though sometimes they get larger and return to a small size. These floaters often make me think I'm seeing a bug or something in my vision, takes a second to remember it's just my eyes.
Anesthetics / Surgery Issues:
- Almost no general anesthesia works properly - it either wears off really fast or doesn't knock me out even in large doses. This has been observed by over a dozen different doctors.
- I've woken up during various surgeries, and my epidural wore off in less than 20 minutes - they barely had time to finish my tubal ligation, and I was fully able to move my legs before getting to the recovery room.
-Local anesthetics don't work at all- for dental procedures, I've had hundreds of shots, which sometimes numb near my eyeballs and parts of my upper face, but don't do anything for my mouth/teeth. I can feel almost all dental work if I'm awake.
-Pain medication does not work normally either, I can have abnormally large doses that someone my size shouldn't metabolize so quickly or be able to handle without seeming "high" or out of it. No one in my life except my family would have ANY clue that I take 100 mg extended release morphine every 12 hrs and 4 mg dilaudid for breakthrough pain because it doesn't affect my behavior or coordination at all. Even my eyes don't dilate severely like most people's do.
Mouth / Jaw / Teeth:
-Jaw locking problems - pops if I open wide enough. TMJ symptoms since I was a young teen.
-No dental anesthetics work or last. I've had HUNDREDS of shots of varying local anesthetics and I can still feel everything.
-Dental pain seems to affect me abnormally badly to the average person.
-I used to get a lot of mouth ulcers (NOT cold sores - little round open wounds inside my mouth, on my inner cheek, inside my lips, on the gums, tongue, under my tongue. Adding vitamin C to my diet seems to have worked to reduce these. My mom and son have the same problem.)
-Very high pallet
-Very crowded teeth with no room for all my teeth - had to have some pulled. Had braces for a few years because my teeth were crossing, and they moved immediately as soon as my retainer broke. Even though I now have some missing teeth - the teeth crowd together.
-My baby teeth never fell out and had to be pulled. I got my first loose tooth at NINE. Two of my baby teeth lasted until I was twenty four.
-I was missing eight adult teeth - one of my wisdom teeth and several of my other teeth both front and molars simply didn't exist.
- My jaw was broken when my wisdom teeth were pulled because the doctor must have not realized that my jaw would just dislocate when he opened my mouth far... my guess is that it easily dislocated from manual manipulation, and he just opened it too far and my jaw bone cracked length-wise. It was a LONG healing process, caused huge swelling and eight weeks of being unable to open my mouth. We had to pry my teeth open with a spoon to put pain medication in - no joke.
-While I was pregnant, my teeth which had NEVER had a cavity my entire life, suddenly began to crumble. Since then (I'm 33 now) - I've lost seven teeth, have two that are beyond repair, and have about a dozen untreated cavities. Fillings seem to fall out, and while root canals do kill the nerve- the teeth can't seem to last after, and regardless of caps, crowns, etc - every tooth I've had a root canal in, has completely fallen apart.
- Since this list was made, I had all of my molars pulled by an oral surgeon. The only teeth I have left are thirteen of my front teeth and those are breaking and will need to be pulled as well. :-(
Thyroid / Fatigue / Insomnia
My thyroid was diagnosed as slightly low functioning at 29 while I was pregnant, but not low enough for medication. By 31 I was low enough to need medication.
-The thyroid issues cause horrible fatigue - even when I take my medication properly, I still have issues with fatigue that's impossible to counter-act without medication (I take 30 mg Vyvanse which helps with memory-fog, short term memory, impulse control AND helps give me the energy to stay awake 12-16 hrs a day)
-I have waves of insomnia that I've yet to solve. I will not sleep normally for weeks, and then be unable to do anything BUT sleep for days. Vyvanse helps immensely but has severe side effects for the first 7-10 days on it and is VERY expensive.)
- Thyroid issues can and have affected my ability to have a second child, and we are now being treated for unexplained fertility issues five years after the birth of my son.
Neck / Throat:
- I have problems swallowing, and at times get a lump in my throat that I can't swallow. It lasts for hours, days, sometimes weeks. Doctors tell me its GERD but I've got no other symptoms of heartburn. Simply a lump that shows up for no reason and wont go away.
- I was finally diagnosed with an incompetent esophageal sphincter during an endoscopy recently - so apparently some stomach acid IS corroding my throat.
Spine / Back:
-Horrible posture - I can't sit up straight, feet on the floor, back straight for more than 40 seconds. I slump, I put my feet up on everything, I sit with my feet tucked under me or up on the dash - on the computer, I sit like a pretzel - it's almost absurd the positions I will get into to get "comfortable" - it's like my body naturally looks to rest on itself - even when I was a police officer, at the range, I'd hold my elbows against my belly to shoot, because holding my gun up was EXHAUSTING.
-I have horrible muscle spasms and knots in my back. Myofasical release massage helps IMMENSELY but only lasts 2-3 days or less because the spasms come right back. It's also really expensive, so I'm lucky if I can get a good massage once a month, sometimes less.
-To date, we've tried nearly every muscle relaxer that exists and none seem to work, OR they just knock me out for 16-20 hours which isn't practical. I'm not currently taking any muscle relaxers for this reason. I now have a prescription card in NJ for medical marijuana (as of July 2015) for muscle spasms, and it does help quite a bit.
-I have horrible ongoing low-back and tail-bone pain. When I was a police officer, I would shove my metal ticket book behind my low back as lumbar support in my car which helped immensely. As a child, I would sit in weird positions to avoid back pain. As an adult, l spend a LOT of time unable to get comfortable - I used to sleep curled up, now I sleep on my back, but I've yet to find a comfortable bed/surface or way to sleep that reduces my pain. A pillow between my knees DOES help. I have since gotten several Yogibo chairs and pillows, which help a lot - I even sleep in my large Yogobi couch from time to time!
-MRIs have to be upright because I'm terrible claustrophobic even with meds - they show some arthritic change but arent overly helpful because nothing is actively dislocated while the MRI is being done, so it doesnt show a whole lot. The first two orthopedists completely dismissed all my pain and problems because my MRI's didn't show any bulging disks, etc.
-I was diagnosed with crohns in summer 2008 while i was hospitalized on and off for seven weeks where I lived at the time. I still have specific foods, meds, etc that I avoid for flareups although some things (like fried foods) are just ALWAYS a no-no, no matter what.
-I've been off medication since my pregnancy in 2010 - and have been in remission since around mid 2009 though I still have have some IBS type symptoms occasionally.
-I cant take anti-inflammatories or NSAIDS as well other typical mild pain relievers. (the entire list is advil, tylenol, aspirin and naproxin) because they cause horrible GI pain, cramping and bleeding, and I'm pretty sure that's what caused or at least triggered the crohns to almost kill me in 2007.
- I have tried EVERY exclusion diet, and skipping gluten, dairy, citrus, meat, carbs, sugars, carbonation, etc etc etc doesn't work. I have literally done each one, for months, with NO results - none of these benefit anything.
-I have regular colonoscopies to be sure the Crohns is still in remission - the only problem is that
- I had severe GI slowdown and even a blockage that required surgery while on oxycodone, so I got off of it - it did help with the chronic pain, but wasn't worth the awful effects on my GI. During the time on 15mg oxycodone, I gained almost 60 lbs, destroyed my appetite and sense of taste, and was constantly battling digestive problems (related to stasis).
- I had one pregnancy and it was fairly normal in 2010.
- During my pregnancy, I was off all medication (I wasn't yet on pain medication as I was diagnosed with and my EDS got much worse at the end of, and after my pregnancy). My GI slowed down naturally, so the pregnancy almost seemed to "solve" all the problems with my crohns even though I'd stopped medications (I had done remicade treatments when first diagnosed, and later was on Asacol and Dicyclomine/Bentyl).
- I have horrible cramps that seem to be worse when my thyroid works properly, but I do have very short periods and very irregular cycles that have proven impossible to track.
- I was diagnosed with interstitial cystitis and have chronic and constant problems that feel like UTIs. I did have a problem with recurrent kidney infections which were solved with heavy IV antibiotic use - but the iv antibiotics caused permanent tendon damage (levoquin and cipro - at the time we didn't know that with EDS, I shouldn't be taking them).
-The cystitis causes chronic UTI symptoms, and I take AZO about fifteen days a month to help reduce the pain/burning/urgency. It's especially bad during that time of the month and is a pain in the ass in relation to my marriage for obvious reasons (though my husband is incredibly understanding). Sometimes I take AZO as a preventative because I *know* the symptoms are coming back.
-I have had awful problems with urgency, maybe I just wait too long to actually get up to go to the bathroom because of the chronic pain, but once I'm en route, its basically an emergency.
- I tried to do both the bladder installations (where they put the medication right into your bladder) plus take the oral meds (elmiron and elavil),but the oral medication made me violently vomit and no adjustments help- I absolutely can't take them. The bladder installations don't last long enough to be worth the inconvenience, humiliation and constant risk of infection, plus, they leave me with the same pain and burning and I still have to take AZO. So I just live on AZO and I'm hoping it's not killing me.
I THINK that's about it.... still adding to this as I think about more things...
I was 29 years old when I became pregnant - the specifics of the situation are a story for another time, but at that time, I was, by all accounts, a fairly healthy and very active person. I was a police officer, I raced BMX on the weekends, I rode a motorcycle regularly and went horseback riding every Sunday morning. I had a lot of "little accidents" and bruised easily plus I suffered with an unusually weak immune system, and I had lots of small things that seemed odd for someone my age - but I never would have dreamed that I would one day be completely disabled because of something I'd had all along.
It wouldn't be fair to say that being pregnant CAUSED me to become disabled, but had I not become pregnant, it's impossible to know if i would have ever been seriously affected by the Ehlers-Danlos Syndrome, especially to the extent that I am now. I may have gone through life just being sick more than the average person, being unable to tolerate the heat, and having an unusual number of "little issues" here and there with my health.
I didn't want to have a baby- I had never wanted kids, but all of that is an entirely separate story. Regardless, by the time I was nine months pregnant, my best friend was doing the best he good to take care of me as the swelling (of my legs and feet) had gotten so bad I could barely walk and all I wanted was the baby O-U-T. When we had gone to the hospital to have the baby, my birth plan was a scheduled c-section but my baby plan was open ended... I was fairly sure my son would be headed to an adoption agency as my life-plan had never included children and I had no intention of being a single parent.
During my pregnancy, I had moved to my home state of NJ to be with family - and with my best friend who I came home every other month or so to see during the ten years I'd lived in Florida. How we didn't know that we'd one day end up married neither of us can figure out in retrospect... and even though we never technically dated (about a week before our son's birth we discussed that by entering a relationship we were basically acknowledging that we were planning to get married - hell, hadn't what we'd been doing all that time we'd spent together over 14 years essentially been dating without the kissing and whatnot? Anyway, he is Kaedin's father, and he had been his daddy since our son was the size of a lima-bean growing in my belly even if we didn't actually know we'd choose in the end to become his parents.
Justin also had never wanted kids, I was dead-set against them, and despite our being the best friends for fourteen years, it wasn't until I moved home pregnant and in crisis that we fell in love... right there between the morning sickness and my ever-expanding mid-section, somehow it happened. The first time he told me that he thought I was beautiful was a slightly sideways comment about how pregnant women can be really beautiful. I got what he was throwing out there... neither of us had ever been the mushy type - after all, we had been platonic besties for over a decade, but somehow it worked.
And as it turned out, he is the most amazing father in the world - like I said, he was, even before we knew we'd be parenting the little munchkin. He was incredibly supportive, from foot rubs and staying up all night with me when I was feeling really awful to emotionally supporting me through the entire crisis that had caused the pregnancy in the first place. But my amazing husband (he's my husband now, he wasn't yet then) isn't what this blog is about... this is all about how my pregnancy caused me to become disabled.
Despite his best effort to keep me smiling and get me comfortable, even all of the foot-rubs, and back-rubs (Not to mention and how amazing to go from scared, alone and pregnant to having the most wonderful man in the world supporting you through a rough pregnancy ALL all the emotional trauma to boot), I was still getting more and more uncomfortable.
He would hold his hand on my ever-expanding belly to feel those insane kicks (and the hiccups my son had for almost an entire month before he was born!) and it was truly amazing to know how loved we both were - but still, I was in a LOT of pain by the time the 9-month mark rolled around. I hadn't gained much weight throughout the entire pregnancy (in retrospect, thank god for that!) - but all the sudden at eight months, it looked like I'd swallowed a basketball.
Due to the traumatic nature of my pregnancy, sadly, there are few pictures the documented the journey, so you'll have to take my word for it, but at seven months along, I was still getting the side-eye whenever I'd park in the "expectant mothers" spot, and yet less than a month later, right around Christmas, everyone (including myself) was quite positive I would burst at any moment, possibly with twins! So when the day finally came (and yes, we made the decision to keep our son and bring him home while daddy was holding him in the middle of my tubal-ligation... the big emotional mess of a decision I'd made as a kick-back from the trauma of the pregnancy in the first place...) - I thought that all that back pain, leg pain, etc would finally end.
I went home on pain-killers - for about ten days after my c-section and during that time felt pretty great. Of course, much it it was probably the fact that I was now engaged and in love with both of my amazing men... I remarkably feeling well for someone who had just had a human being ripped from their abdomen and I was actually up walking around quite a bit just hours after our son was born.
I had remembered the horror stories from my sister in law who couldn't walk for days afterwards, but none of that was the case. In all reality - had my digestive system responded better to the dilaudid, I probably could have gone home that next day, but instead we got snowed in and spent six blissful days with nurses and catered meals and we all snuggled together and slept in my hospital bed. (It's a pretty weird way to start a marriage, by the way... his family was all "So... you're not coming home after work because you're at the hospital with your new baby.... um....)... but again, THAT is a whole other story. :-)
Our First Family Photo (1/24/11): I was crying. Right before this photo was taken, my then fiance brought the baby over for my first look and said to me, "I think we need a car seat." Until that point, we hadn't decided that we would be parenting vs. my placing the baby for adoption as I'd been planning through my pregnancy, so this picture is incredibly special to us. I was so incredibly blown away that my best friend had fallen in love with our son so completely before I'd even had a chance to lay eyes on him.
The problem wasn't my body wasn't the c-section or the recovery afterwards, what actually "upset" my faulty collagen had started long before the surgery as my body was moving through the stages of pregnancy and preparing for labor. All the low-back pain and hip problems I'd been writing off as pregnancy-related weren't actually -they were foreshadowing.
The problem began to show itself in the weeks after the birth when the low-back pain from the pregnancy (it had crept up right around the eighth month) had never gone away... by early summer it had gotten so bad I was at my GP asking for pain medication and MRI and x-rays. Disappointing and confused by "minor arthritic change" being the only notable thing, I couldn't understand why my pain was only getting worse. And spreading. It seemed like my knees, my ankles, my shoulders... one at a time, every joint in my body was starting to slip out of place, to sit funny - I'd dislocate a hip during sex (sorry for the TMI, but I promise, no one was more traumatized than we were!) - I'd step down a step only to find that my ankle had slipped out of place and end up in a heap on the ground.... something was very wrong and it wasn't related to my now months-gone pregnancy. By now my son was standing on his own, and I was becoming less and less able to stand on my own, even sitting up for long periods was excruciating. While he was having tummy time, all I could do was lay flat on my back on a heating pad, taking twice the recommended dosage of Advil and nothing was helping.
Finally, almost a year after my son's birth- after various referrals and two orthopedists who told me that nothing was horribly wrong with my back, I saw an orthopedist who was able to give me some REAL answers. (For the record, my husband had already come to the right conclusion) But for me, this was a real specialist, who I really trusted, who could explain what no one else had figured out: I have Ehlers-Danlos Sydrome, Type III. Otherwise known as Hyper Mobility Syndrome, it's a genetic condition that causes faulty collagen, which is otherwise known as the glue that holds us all together. So here I was, feeling as if I was coming apart at the seams... and I really WAS! As upsetting as it is to have a genetic disorder and no hope for a cure - everyone I know who has been diagnosed to this day is just glad that they finally have answers.
Being told that it's not real, that it's all in your head - it's demeaning, it's downright abusive. To have doctor after doctor treat you as if you are a head-case while your body is being racked with such severe pain that your quality of life is becoming non existent, you just don't understand what that's like until you're living it. I was just glad to have something I could go home and Google, to read about, to learn about, to learn to cope. The first stage of accepting this condition is knowing you have it - so at least I had that.
And for the record, I really have to thank my orthopedist Dr. Levy from Sprains Strains and Fractures in Cherry Hill, NJ because he's an amazing person and he really may well have saved my life, because up until the point where I started getting proper treatment for this incredibly painful condition, it was not looking good for me.
I spent the first few days after the diagnosis in tears- at first I was terrified I had Type 4 (Vascular EDS, which is often deadly) - I do not, I have type III. But still -this has no cure. It's a lifetime of pain. The dislocations will never go away, they will never stop - surgery won't help. This is a condition you manage and learn to live with - but it's not something that you can change because it's faulty genetics. And worse... I could have passed it to my son. But now you know the end of the story, and you didn't really find out HOW I went from being a healthy happy 130 lb police officer to a 185 lb disabled woman with a three year old son... so let me explain how pregnancy (and later, an inept moron of a doctor at Virtua Hospital in Voorhees) destroyed my body...
(but first let me say... even had I known that this would be the outcome... we wouldn't trade our son for the world.)
HOW PREGNANCY CAUSES EDS SYMPTOMS TO GO AWRY ...
The relaxin hormone floods a woman's body at the end of pregnancy to prepare her hips and pelvis for birth - unfortunately that hormone loosens up ALL your joints, not just your hips and pelvis. A healthy women's body will slowly tighten back up, and her lax joints from pregnancy hormones will slowly go back into their normal place after labor as the healthy collagen does it's job after the pregnancy is over.
Unfortunately, my defective collagen couldn't help my body go back to where everything belonged. The pregnancy set me up for a lifetime of joint dislocations each and every time I move, even ever-so-slightly, the wrong way. If I reach for something in front of my, my shoulder can drop out of the socket. When I roll over in my sleep, my hip often slides in and out of socket more times than you flip your pillow to get to the cool side.
Every joint in my body regularly dislocates, except oddly, my elbows, which seem to have remained free from the effects of my hyper-mobility. Everything else in my body is affected; my jaw broke during surgery to pull my wisdom teeth, my fingers dislocate from typing, writing with a pencil is physically painful, my wrists snap from picking up my cell phone to look at my text messages, toes slide out of socket and are so cramped and painful the only way to put them back in place is to get on my feet and apply pressure to them with my whole body to "re-set" them into place, my ankles drop if I try to run (that's a joke - trust me, there's no running going on here!), my knees dislocate from staying bent on an airplane or at a movie, and more than anything, my hips.
My hips are why I walk funny - they are why I'm in horrible pain as i type this blog, they are why I can't sleep, why my back is constantly a huge tangle of painful knots.
My hips are the bane of my existence... That's what the collagen disorder, EDS Type-III is, after-all. As a child, they put these awful bar-shoes on my feet to try to stop me from "toe-ing in" as they called it. Doctors told my parents not to worry and that I'd "outgrow it" and not one specialist was concerned that I can rotate my feet well over 180 degrees inward, even walking with my feet facing forward and backward at once. Here's a photo to illustrate. And here's one that shows what I can do standing up...
It's quite typical for woman (and their doctors) to only put together all the puzzle-pieces of a lifetime of "little things" together after a pregnancy, when all the damage done by the relaxin begins to cause chronic pain. And that's what happened to me.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.