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OctaviaWood (@octaviawood)

Adults living with scoliosis, thoracic stenosis

Spine Health | Last Active: Dec 1, 2016 | Replies (41)

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Hi there, my name is Alanna, and I’m a 34-year-old woman who was diagnosed with scoliosis at the age of 15. In the first years following my diagnosis, I was advised by both my family doctor and an orthopedic surgeon that my scoliosis should not cause any pain, and that it shouldn’t interfere with my functioning or with leading a normal life. Unfortunately, over time that counsel has proven to be anything but accurate. Throughout my late teens and my twenties, I felt mostly okay. My gait felt awkward due to the unevenness of my hips, and I felt some back pain while exercising, but I was still ABLE to exercise and was pain-free most of the time. Since I turned 30, though, things have changed dramatically. I now have burning pain in my back when I sit for an extended period, but the worst part is my lower body. My right hip juts out so unnaturally that the angle from my hip to my knee is very steep and puts a ton of pressure on my knee. Same with the angle from my knee to my ankle. My right leg aches and throbs incessantly; all of the muscles are extremely tight (I feel like I am never able to stretch them out to the point where they feel close to normal), and my joints throb. I know some people find that walking helps alleviate their scoliosis pain, but for me, being on my feet (anything that puts those unusual angles between the joints of my right leg into play) in any form, be it standing, walking, running, climbing stairs — all of it makes the pain worse. This has meant that my once active lifestyle has become very circumscribed. I can’t go for walks; I tend to want to avoid standing activities I enjoy, such as cooking; going out to run errands feels like too much bother because of the pain I know it will involve . . . I end up staying home, isolated, much more due to my pain. Even inside the house, I’m more likely to be lying down than in any other position, since sitting and standing both hurt. As I mentioned, I am only 34. The prospect of this reality persisting for the rest of my life is very difficult for me to accept. Because of my inability to take part in any kind of weight-bearing activity, I am especially concerned about loss of bone density and risk of osteoporosis as I get older. Doctors still tell me that scoliosis shouldn’t cause pain, leaving me feeling very stuck and longing to find someone who can help me. I know surgery can be quite risky, yet I feel I’d be willing to try almost anything to regain some of my lost mobility and reduce my pain level.

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Replies to "Hi there, my name is Alanna, and I'm a 34-year-old woman who was diagnosed with scoliosis..."

alannaj I have been living with scoliosis my whole life without the pain (except if I sit to long than it get uncomfortable but once I put a pillow on my back I feel fine) In fact I didn’t know I had scoliosis until one day I looked in the mirror and notice this unusual curve to my hip. If your orthopedics doctors still say that there is no reason for the pain. Maybe you should look further to what other ways may be causing you the pain. I realize that your scoliosis is the most obvious answer but maybe it is not the answer now. I suggest going back to your main doctor and explore other causes. At this point you are obviously at an impass and exploring other areas may help.

Welcome, @alannaj; chronic pain can be so frustrating and debilitating!

You might be interested in the discussion going on in the Chronic Pain group called “Scoliosis and Chronic back pain”
I’m so glad you’ve already met @safetyshield and @rareeby. I’d also like to introduce you to @vickiekay, @kathyv, @edieguinn, and @amberpep, and hopefully they can offer more insight into scoliosis and related pain.

Have your doctors suggested you seek a second opinion, or surgery? Have they recommended other tests to rule out pain from scoliosis?