Living With Scoliosis: When Things Change

June is Scoliosis Awareness Month, so I thought it was the perfect time to explain a wee bit more about my back pain. I have been living with scoliosis (a curvature of my spine) for fifty years, and with the pain it’s brought for over forty years. I’ve learned to live with the pain as well as I can, but sometimes things change and make it more difficult to cope.

My Life With Scoliosis — Curves That Change Lives

My scoliosis developed when I was about ten years old. At that time, an orthopaedic surgeon told me it was only a cosmetic issue and assured me it would never cause pain. I’m not denying there is a cosmetic aspect to living with scoliosis — it affects how I look and how clothes sit on my body, and that bothered me a lot when I was younger.

But by my mid to late teens, I started experiencing back pain. By my mid-twenties, the pain was severe and led to me having to take early retirement from work when I was 28. You can read more about my diagnosis and how it affected my life in this post.

Not working meant I was able to find ways to cope with my pain. I could pace myself and rest whenever I needed to. But I’m human — I did have days when I pushed myself too hard and ended up with horrific payback pain. And of course, there were times when my pain would soar for no obvious reason, and I had to just ride out the storm until it settled again. For over forty years I’ve lived with pain. The only variation was in severity, but mostly, thanks to medication and my own pain management techniques, I coped.

Living With Scoliosis and Pain — Something Has Changed

However, something seems to have changed since last year. Initially, I thought I was going through a bad spell, but it was more than that. My pain had changed. It was interfering with the most basic tasks, and no amount of pacing or resting was helping.

On a normal pain day in the past, I paced myself so I could do basic household chores. I managed to draw for a short time most days, and I occasionally even managed to bake. Everything I did had to be paced. I took regular breaks and stopped what I was doing before my pain stopped me. If I had been on my feet, sitting down always brought some relief.

I was never completely pain-free. Everything I did made my pain worse for a short while, but I always felt I had achieved something, and I could cope with the extra payback pain for a day or two — especially if I had a slice of homebaked lemon drizzle cake to go with it.

That’s Changed

But everything has changed.

My “normal” pain level has increased significantly, and no amount of pacing or resting helps.

Most days, I can’t lift a kettle with only enough water for one mug of tea.
I can’t sit to draw at all any longer.
Standing to wash the dishes is almost impossible, although I try to do them, because I feel as though I need to keep trying.
Sitting down no longer brings relief. It helps my back slightly, but increases the pressure where my ribs and pelvis meet. It feels as though my ribs are sinking further inside my pelvis.
The best relief I get is from lying down, almost horizontal.

On a “good” day, I am lucky if I can stay upright (with a combination of sitting or moving), until after lunchtime. Other days, I need to go back to bed after breakfast.

More Medication

I had held off going to my GP for a while, thinking and hoping that this was a bad spell. When I eventually went, I was prescribed extra-strong pain medication to take as needed. But, as with all pain medication, I don’t tolerate it well. I can’t function when I take it, and it leaves me feeling headachy and hungover for the next couple of days. Because of that, I only take it when I really can’t cope with the pain any longer. I have to weigh up what’s worse before taking it — the pain or the side effects. When the pain wins, I have to put up with the side effects.

I hadn’t done anything to cause my back to get worse. I hadn’t pushed my limits enough to cause a drastic change, and I hadn’t had an injury. In fact, I’d done nothing differently. So I couldn’t help but wonder why my back seemed to have deteriorated so much.

My scoliosis affects my lower back. On the right side, my pelvis is higher and protrudes. Most people have space between their ribs and pelvis. I don’t. For many years, my ribs have sat on my pelvis. This seems to have worsened. Now my bottom ribs can no longer be felt. It feels as though they have dropped inside my pelvis.

Iliocostal Friction Syndrome

I got some help from Dr Google and discovered that this is common for people with scoliosis and osteoporosis — I have both. It actually has a name: iliocostal friction syndrome.

Reading the description of iliocostal friction syndrome, I felt as though I could have written it myself:

• Pain from the ribs rubbing on the pelvis.
• Tenderness where ribs and pelvis meet.
• Severe lower back pain.
• Pain radiating to the hip, groin, abdomen and thighs.
• Pain in the sides of the body.
• Pain is worse with standing, walking or bending.
• Sitting can aggravate it.

Another GP Appointment and a Referral to a Specialist

Obviously, I can’t diagnose myself, but I did see another GP and told her what I’d found. I was apprehensive about doing this, as I know some doctors don’t appreciate patients doing their own research. But I needn’t have worried. I saw the most empathetic doctor who listened, and when I told her I had been researching, she immediately said, “Oh, good, what did you find?”

She hadn’t actually heard of iliocostal friction syndrome (not surprising, as it’s very specialised), so she looked it up and agreed that it was likely the cause of my symptoms. I mentioned earlier that she was the most empathetic doctor I’ve seen — she told me she could see I was crippled by pain and needed help, not just another prescription, but help for a structural problem. She referred me to the Scottish National Spine Service.

That GP saw me. She heard me. And she tried to help me. That should happen every time someone sees their doctor. But sadly, it doesn’t. I felt quite emotional that day because of the empathy she showed.

And Now…I Wait

The Scottish National Spine Service treats patients from all over Scotland, many of whom will be young people with scoliosis. At sixty years of age, I will likely be somewhere near the bottom of the waiting list. That I can cope with — those youngsters need the help I didn’t get when I was young. I don’t know if they’ll be able to help me, but right now I have hope because I will be seeing a specialist who understands scoliosis and iliocostal friction syndrome — and the pain that comes with it.

Living With Scoliosis Has Never Been Easy

Living with scoliosis has never been easy, and with these recent changes, it has become more difficult. I try to focus on what I can still do rather than what I can’t, although at times that is harder than others when even the simplest things are affected.

What helps me the most right now is knowing that I was listened to, and that I will be seen by a specialist in Edinburgh.

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