Most people have growing pains. Scoliosis patients have daily pains.
Frankly, I cannot recall the last time I felt utterly pain-free. If you asked me, probably 20-ought years ago during my pre-teen years when the curves were not progressing at an obviously alarming rate.
Fast forward 21 years (since first diagnosed), I have to say that there is indeed pain, some sort of pain, at some spot, or a variety of spots, everyday. Weirdly enough, the pain-spots or pain-areas can be different each day. On Monday it could be my shoulder blades. On Tuesday it could be the upper curve. Wednesday it could be the rib hump that was removed during the first surgery. Thursday it could be my formerly-frozen shoulder with nerve pains all the way down my arm to the tips of my fingers. Friday it could be the coccyx area. Saturday the lower curve. Sunday the formerly-compressed nerve on the lumbar area, pain tingling all the way down the formerly-temporarily-paralyzed left leg.
Some day the pain could be so mild, I can go on all day gym-ing, baking, carting kids left right center, and then to bed humming to myself. Other days the pain makes the body feel a hundred years old, the mind fogs up and only cross words can come out from my mouth so I keep it shut and quiet throughout the door as much as I can.
I am very very sure that most Scoliosis patients with mildly-moderate to severe curves experience this. The good days, and the bad days.
In the support groups I see young girls writing painful words; words of pain, words of loneliness, words of worry. Their words effect me more than I expect sometimes. I suppose only those who go through such pain would really understand the various pains Scoliosis can bring to the human body. Aches, throbs, tingles, shortness of breath, numbness, soreness.. well, to name a few.
The doctor (Dr. M) at Spinal Inc. said something that hit me, made me realize that I had been living my life wrongly all these years.
RIGIDITY EQUALS PAIN.
My friends, this is true, whether you realize it or not. Or whether you want to admit it or not. This does hold true.
I remember winter months in Melbourne, busy with assignments, my whole back tight from a whole day in front of the computer, bent over books and materials. The whole back area was screaming in pain and the agony was vivid as I rolled my shoulder blades to rid of the 'kinks' I felt. A *'kruk kruk' sound like bones cracking and snapping against each other making me wince and wondering how long it can go on this way. (*Credit to Joveen C from the support group for her 'kruk kruk' description)
Rigidity is not good.
So that is the most valuable lesson I'd taken away from Spinal Inc. Daily schedule leaves me with little free time and I have not been to Spinal Inc. for my treatments in months, but amazingly enough, I feel great most days despite the pain. The good days are really good. The bad days are not that bad either anymore. (Alhamdulillah)
Here's the key: the key to manage your daily pain is to keep your back muscles relaxed, not rigid.
Every patient is different, so I am not here to give you specific 'instructions' on how to relax (and strengthen!) your back muscles. But I will share my experience here, hopefully others can find it useful and eventually figure out what works best for yourselves.
Relax AND strengthen the back muscles? Sounds like an oxymoron doesn't it. If you're wondering why I think relaxing and strengthening go and it hand, I personally believe it has something to do with blood flow and muscle strength. You see, it is important to move (i.e. exercise!) and get blood flowing to your back area. Once blood starts flowing there, your muscles will feel 'warmed' up and you won't feel so rigid anymore. And eventually, once your muscles are used to being 'exercised', it increases in strength and so everyday you can do a bit more, you can feel a bit better, you can be a bit better and so your strength and quality of life will increase.
Is this even scientifically proven? No, I apologize, I am only speaking out of personal experience.
Exercise saved me from rigidity and pain. Please, give it a chance and maybe it will help you too.
Exercise is such a taboo word, really, people have images of vigorously sweating people in work-out clothes when I mention exercise, no doubt. But what I mean is exercise can be as simple as putting on your slippers, and simply taking a stroll around the block for twenty minutes. Move your hand in motion, heck, wave it gently around if you want to a'la aunties-walking-in-the-park if it makes the blood flow to your back better. Swimming is another misconception too.. swimming doesn't have to mean swimming laps. Float on your back, gently move your arms around like you're a water-angel (like snow-angels, you know? Hehe).. stay in that water and just have fun for twenty minutes.. do this three to four times a week. Just some simple exercises that MOVES the back area.. and you will be amazed at home much better you'll feel in a week or two. And in a few months, you'll feel so much better about yourself that the future will seem somewhat better.. not so much filled with pain anymore!
And when you're working in front of the computer and the back starts feeling tight and rigid, and you feel the pain coming... get up for a while and move around the house. Do stretches. Bake a cake. Cook up a stirfry. Look up the ceilings while you walk around the house to look for cobwebs. Whatever that simply gets you moving that body and those back muscles for at least ten to fifteen minutes.
The trick is to train your back muscles to be relaxed. When it's relaxed, the pain will lessen.
Give it a try, really :)
Down with muscle rigidity!
Swimming with the five year old who can swim even faster than I can. The water's the only place I can hold my babies without feeling strain on my back (due to the water buoyancy).
