Rita’s Story

I’ve always been very flexible. didn’t realize i was ‘hyper-flexible’ and that there was danger in over extending beyond the normal range of motion. I thought you couldn’t be too stretched out, too flexible. Wrong. I’ve also always had crackable joints, knuckles, back, neck  etc. and hips. often I’d get this odd feeling that my hip wasn’t quite in it’s socket, so I’d stretch my legs out while standing and bend to one side until it ‘cracked’ and popped back in place.

I had NO idea that things were actually out of place and that this was a sign of problems to come.

I was first diagnosed with osteoarthritis in my early 30s. My doctor said that, while it was a normal part of aging, I was very young to be starting the degenerative process. I wasn’t an athlete, didn’t lift weights, nothing to indicate more than normal wear and tear. I didn’t think much about it. He didn’t offer and I didn’t ask what lay ahead for me, what I could expect to happen, and most importantly, what I could do to lessen the chances of serious problems. No stern warnings, no alarms, just a casual observation. How could I know what he meant? As is normal, since the pain was in my back, all he looked at was my back.

I am not 53. Since then I have had problems in almost every major joint–with fusions in my neck and back, shoulder and knee issues, and now my hip. Actually the hip started hurting in 2008 on the right side. it was then that I discovered that I had hip dysplasia. The doctor didn’t seem too fazed by it, didn’t make a fuss over it, and they told me it meant I was more likely to develop arthritis there, and that was it. Once again, he only looked at the hips, as if they weren’t connected to any other part of my body. I had a lot of pain and ultimately couldn’t walk very far. Tests showed I didn’t have bad arthritis there and didn’t seem like a candidate for surgery. They didn’t know why I was in so much pain. I had multiple MRIs, pain killers, and physical therapy out the wazoo.

A year later I could hardly walk and I went back to the doctor demanding answers. He happened to take a plain old xray at a particular angle and he said, “well I don’t know about your hip, but you should see a back specialist right away’. Almost immediately after seeing the back doctor I had a double fusion in my lower spine and my hip pain miraculously disappeared. Four years later and it’s all still just grand.

What does this have to do with hip dysplasia? Fast forward four years, and I find that my other hip hurts–in a different way, and I have all the tests and symptoms of, not only hip dysplasia, which I find out is more serious than my first doctor led me to believe, but also arthritis and a labral tear that will probably require surgery. I’m now walking with a limp a lot of the time.

What I wonder is whether, when I was in my 30s, diagnosed with an unusually early onset of osteoarthritis, it would have been a good idea to get a look at the rest of my joints, look at the whole body and see what was going on and what to do from that point forward to prevent the kind of joint by joint deterioration I’m seeing now. It’s very frustrating. Seems to be largely a failure of western medicine to look at the whole patient–hyperflexibility, sensitivity to pain, etc.–so we could develop a plan of action for me to stay as healthy as possible.

Hopefully my new hip doctor will take a more holistic approach. I hear great things about him and am looking forward to the next steps. I don’t want hip replacement, but from this website it sounds like it’s inevitable. Makes me wonder: could they have detected and corrected it when I was an infant or child?

Thank you for bringing attention to this problem.




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6 Notes

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  1. Milly says:

    Of course it could have been detected and corrected when you were a child. I have had a similar experience and because traditionally doctors are not taught to look at ‘the global state’ of a patient they don’t join the dots. Really sad for you.

  2. Gail says:

    Hi Rita,

    I couldn’t agree with you more on the issue of looking at how the body is developed and functioning as a whole, rather than in parts determined by the specialty of each individual doctor. In my own life, and in that of an RN, I have seen, a general disregard for how any body part other than the one that’s hurting, would be connected to a problem elsewhere in the body. It’s almost as if the fact that ‘referred pain’ (where an injury or problem in one part of the body is causing pain in another), doesn’t exist.

    For example, I have one flat foot and one “normal”. I am convinced that many of my lower back/hip problems may be related to this discrepancy. Similar to trying to build a house on an unstable foundation, problems inevitably arise. I am 54 years old and have had not one doctor look at this fact as a potential cause for concern. And it may not be but why not connect the possibility, and take a look at how it could be resolved? It seems only logical to me.

    My journey has not been nearly as complicated or involved as yours but your simple observation of the need for a more holistic approach is not lost on me. Your positive attitude is remarkable and inspiring. Thank you for shring your story. I wish you only the best to come in your journey to health and well being.

  3. Rita says:

    Hi Gail,

    Sorry to hear about your situation I’ve given up on the new hip doctor. Like all the rest he’s a surgeon only.

    But I’ve got a great physical therapist, and he DOES see the body as a whole. He also recommended I see a physiatrist, and I wish Id done that from the start! They are MDs, as you probably know, and since they do a lot of sports rehab, a lot of non athletes don’t know about them. But they also have a whole body-augers is not the only answer approached. I’m psyched! Give it a try maybe? Good luck!

  4. Jessica says:

    Rita And Gail,
    Have You Ever Heard Of Ehlers Danlos Syndrome? PLEASE
    Google It. Look Into It. You Sound Like Me. I Went 12 Years
    searching For Answers.
    Seriously, Please Look Into It.

    Sincerely,
    Jessica Anderson

  5. sarahw says:

    OMG You are me, or I am you! That is exactly what I am like. My yoga teacher even told me I was too flexible!

    Yikes.

    Thank you so much for sharing your story!

    Sarah x

  6. Cheryl W says:

    OMG, I too have been flexible from a child. And now with multiple back injuries, pain and spondylitis walk only short distances at a time and with a prominent limp. You are so right doctors arent listening to your suggestions or thinking outside the box,or diagnosed (back) I pray for more answers and will pray for you as well.
    I have tried and now will turn this over to Jesus for answers. He says give him your problems and leave them.

    Thanks for sharing your info,
    Cheryl

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