I don’t think I’ll tell this story chronologically. That’s boring – at least it bores me. The details of how I got here over the last 33 years are often painful and frustrating. Rather, I will reveal bits of that story from time to time as needed. Suffice it to say, I was not diagnosed, and then misdiagnosed for a long time, and because of that, it was bad. People who have hypermobility have a very specific list of things they need to do and more specifically NOT do. I think I had been doing everything on the DON’T DO list for some time. By the time I got to my physical therapy office, I had years of injury built upon itself. This can really complicate the picture, especially when your flexibility causes you to be, well, inflexible. It can make it hard to get an accurate diagnosis (it did for me). My whiplash was so bad, I could barely move my neck for about 20 years, and yet, after one month of proper therapy, I could touch the back of my head to my back. (Sidebar: that’s not normal. And it’s gross, according to my friends). So don’t think just because you can’t touch your knees/shins/feet that you don’t have this. That’s not normal either…
The first lesson I learned in PT was that our posture was going to make or break us. Jen proved it to me by testing our limbs – we couldn’t resist her muscle test at all, arms or legs. She rolled up a towel, stuck it behind our lower back, and “supported” it. After about a minute, she tested us again. Boom – stronger. Hypermobile people have weakness in their arms and legs caused by poor posture. It is simply harder for us to hold our spines up, because they are too loose. By adulthood, many of us have scoliosis that we were not born with. I’ve seen my MRIs: they’re a hot mess. The “migraines” I were getting were not migraines, but were cervical headaches caused by my neck falling forward and constricting nerves and blood vessels. Many EDS people have instability of their atlas/axis joint, which holds their head up. You’re head is about 10-13 lbs, and on a rubbery neck, that makes you like a newborn baby.
A Normal Cervical Spine Xray
My Cervical Spine, straightened by years of whiplash…yuck…
So, I became fanatical about our posture. I bought back rolls for chairs, for my car (you want your hips to be above your knees), lumbar support for the kids chairs at school (which everyone told me they would get teased for, and really, all of their friends think they are “so comfortable.”) I stopped crossing my legs (that was hard. It took me about a month to kill the urge)
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My work station. I have two pads on my chair, I prop up my iPad so it is at eye level and I don’t strain my neck looking down, and use a remote keyboard so I can support my arms on the table to type. When I need to use a laptop, I have it up at eye level, and I go back and forth from sitting to standing, but it doesn’t support my arms. I won’t buy a laptop again. When I next upgrade my computer, I will make sure my monitor and my keyboard are separate…
I had to think about this stuff all of the time, and what was harder, remind the kids all of the time. That first summer was rough. When people want to change a habit, they need to really focus on it: it doesn’t happen on it’s own. The first 24 hours I thought “chin tuck, chin tuck, chin tuck…” and then it was just a few times a day I checked in with myself (chin tuck?) Now, maybe once a month, I say to my PT, “How’s my posture?” Perfect…it always is now. It became a habit.
My kids are a different story. They need me. They are not mature enough to understand the consequences of their actions. They love slouching on the couch, and lying on their belly, propped up on their elbows to read. They like to sit at the table and lay their head down when they are writing their homework, slouched over. And crossing their legs feels good. What can I say that convinces them not do it? The consequences are too far away…I bought pillow pets, pillows with arms they can read against, anything to make supporting their spine more fun. In the beginning I was very strict, and cued them all of the time. I took a lot of flack from well-meaning people for my Drill Sargent demeanor (I didn’t care. They don’t have to pay our price.) I have tried it all: lengthy explanations as to why we can’t do ___ anymore, brief one word barking (“Chin!”), non-verbal physical cues, (gently uncrossing legs, putting prop pillows in place, pushing necks into place). On bad days, I resort to, “You don’t want to turn out like ME someday!” I make a game out of it as much as I can. For example, you may catch my kids and I playing “Who has their core muscles activated and can take a stomach punch?”
Don’t judge me. It makes them laugh, it keeps them strong, and I can always take the hardest punch.
(first Published on Blogger on 3/29/14 2:34 PM Pacific Daylight Time)
I went to the Laser Spine Institute today thinking I was going to find out I had a spinal leak. Instead, I found out I have a straight cervical spine. I was just wandering if you had intense headaches? I feel like mine is going to explode been going on for two years. I feel awful and always have been an active person I need some answers and they didn’t help me at all at that medical center.
I have been plagued with horrific headaches for the past 3-4 years, Nickole. I have identified three different types with three different causes: I get migraines from muscle trigger spots in my neck (SCM muscle mainly,) I get cervicogenic headaches which start at the base of my head and make me feel like I want to dig an ice pick into the back of my skull to relieve the tension and pressure, and I rarely get a horrible throbbing at the base of my head and eyeballs where I can’t tolerate any changes in posture which are known as “spinal” headaches. This is caused by a blockage in the spinal fluid pump and people who have a chiari malformation usually experience this type of pain.I don’t have one of those, but I do have a narrowing in my thoracic spine and dysfunction in my lumbar spine at the base of the pump which can shut it off. I have found relief by treating the migraines with Topamax, PT, ice, and dry needling the trigger spots. I do a lot of posture correction, as you could see by my post so I don’t make things worse. This also helps the cervicogenic headaches, which are really caused by weakness and tension in our “straight necks.” I have also been diagnosed with cervical instability, which may be a next step for you. There are surgical options if you have disc instability. One is fusion, which I have opted not to do, and the other is a denervation so you don’t feel the pain, which I just did about a month ago. Time will tell if it helps me manage the pain long term. I hope this was helpful, and I am so sorry you suffer! Living with headaches is just awful 🙁
Do you have any recommendations for a 14 yr old boy who’s just been diagnosed with EDS? (Technically, we’ve known it for years, I have it very badly, but trying to get doctors to take it seriously has been a nightmare.) Now he has the diagnosis though, his school will have to do what is necessary to prevent his condition developing. (Right now, he doesn’t appear terribly flexible but I have a feeling his muscles are doing what yours did.) He suffers badly with pain in his knee, especially after a series of repeated attacks by bullies broke it, and he finds gripping pens so painful it brings him close to tears. It frustrates him so much, I want to be able to help him adapt, and protect himself. The very last thing I want is for him to end up anywhere near my condition (when I first got ill, I was just diagnosed with mechanical back pain. The fact that my spine was literally collapsing when I tried to stand was just weakness, so they made me jump on a trampoline. On the list of things to avoid, I think that has to be pretty high up!) I’m completely crippled now, I can only sit upright with strong corsetry around my body, so the steel bones provide my spine with some “scaffolding”. (I have a very strong core but there’s only so much that those muscles can do, isn’t there?) My hope is to ensure he lives as normal a life as possible. I’d appreciate any advice!
I have so much advice! But first, welcome, Lynzi! I have written several posts which I think would be very helpful. My most recent one, is a good “first post” to read. The knee pain is brutal. How are his shoes? I am militant about footwear and orthotics: As for the pen gripping, I hear you! We all struggle with that as well. There are simple tools he can use to ease up his grip found here: Does your son have a 504 Plan at school yet? If not, you will want to get started on that ASAP. Getting him accommodated in class is very helpful. My children have alternative seating, keyboarding so they don’t have to handwrite, extra time for assignments, PE modifications, etc. But the most important thing you can do is outsource: he needs PT/OT/massage to start working on those tight muscles so that he can build real strength and stability for the marathon that is our life. We built a Dream Team of experts who know hypermobility to guide our care, and those that didn’t know it well, we helped educate. I hope this answers your questions! Please follow me on Facebook. I have videos about using kinesio tape, and I talk more often about life with chronic illness and give EDS tips. Good luck!