All About Pain and Scoliosis

This is Part 19 of a serial blog originally titled 'Martha Carter's Healing Journey'. In Part 18, I talk about how everything in the body is connected, even seemingly unrelated aches, pains and traumas collected over a lifetime, and share my journey to a far away island for unexpected healing. In Part 17, I caught up with scientist and friend, Dr. Kristen Fay Gorman, to get an update on the latest (fascinating!) scoliosis research and findings. Missed the earlier posts? Read Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8,  Part 9, Part 10, Part 11, Part 12, Part 13, Part 14, Part 15 and Part 16.


Pain is Loud

Have you ever noticed that pain can be LOUD?

There have been a few times in my life when I have experienced such crazy ‘loud’ pain that I could not even think, or be, or feel anything -- except that pain.

When I woke up after my first scoliosis surgery, I could hardly breathe due to the extreme amount of pain. I remember vividly those first agony-filled minutes between the moment I awoke and the moment that the morphine drip finally kicked in. It was shocking. Thankfully, it was only a few minutes.

Loud pain is all-encompassing; it creates trauma and exhaustion. And sometimes, when it gets out of control, pain can become impossibly chronic, engraving pathways in the brain that become permanently embedded.

For extreme physical pain, medication is life saving. Unfortunately, our society is learning the hard way that we cannot use drugs as a ‘go to’ solution for all the pain all the time as it can lead to other problems, such as organ damage, addiction, and overdoses. In addition, taking pain meds for an extended period of time can alter the body’s innate ability to heal itself.

So, specifically, what is there to do about pain from scoliosis?

Like most things with scoliosis, no two people or pains are alike -- pain can be very challenging to describe, and different people may need different approaches to overcome it.

Scoliosis pain can be confusing

Before we talk about pain solutions, let’s talk about the pain itself. Scoliosis pain can cause a world of loud discomfort that can be very confusing.

Just as curves and twists are unique in each body, the level of discomfort they cause also varies greatly. I have met people with large curves who never have pain, and people with almost imperceptible curves who suffer all the time. There appears to be no logic.

To confuse things further, physical pain from scoliosis can cause different sensations at different times, and often at very different volumes. How to describe it? Is it sore, tender, hurting, stinging, twinging, shooting, cramping, aching, throbbing or burning? Or is it just a bit tender? These words all mean different things to different people. A little bit of soreness felt by one person may read as severe burning for another.

One thing is for sure, for most people with scoliosis, pain is a regular companion.

She (in French, the word for pain is feminine!) is most commonly described as a chronic, deep ache in the ‘hump’ areas of the back due to the overstretched muscles there, or as a stabbing or throbbing pain in the concave area, where muscles are often weakened by the compression.

In the case of people with fusions, there are often additional irritations like burning pain where the metal hardware causes friction against organic tissue, or sharp spasms where tissue has been cut and has turned into tough scar tissue, or severe discomfort due to degenerated discs above and below the fusion, or random poking sensations due to broken hardware.

And as I have said before, scoliosis is an especially confounding condition when it triggers pain in other parts of the body, besides the back; sometimes disguised as something else.

For example, the curve and twist of the spine can put pressure on the spinal nerves, causing  burning pain and numbness to radiate throughout the whole body, or down one limb.

In fact, the asymmetry caused by a crooked spine can throw off any or all of the body’s operating systems. The musculoskeletal, nervous, and organ systems are intricately intertwined. Stress on one part of the body will very easily transfer to other parts, causing all kinds of pain symptoms, and potentially provoking fatigue, weakness, and disability that can lead to even more pain -- including emotional pain.

About the connection to emotional pain

The more I meet ‘scoliotics’, the more I have noticed that many experience heightened stress, anxiety, and depression. I have often thought this must be due to a combination of the emotional stress of dealing with feeling ‘wrong’ and the physical exhaustion of fighting chronic pain.

But the tricky part is that science shows that it can also work the other way around -- where it is the heightened stress, anxiety, and depression that can lead to the pain.

In other words, physical pain is often coupled with emotional pain, and it is often very hard to know which comes first. Emotional pain can be as difficult to identify as physical pain. Words like frustration, anger, grief, heartache, sadness, unhappiness, distress, misery, despair, agony and torment are all words I have heard to describe the emotions around scoliosis pain. And these feelings can be very physical!

My own experience

In my own personal experience, I have struggled with all kinds of pain… and I have also felt deep frustration and sadness that I know is directly linked to my scoliosis.

Sometimes the physical pain arrives for no apparent reason - like when I am awakened by a burning pain along my spine in the middle of the night while lying still, or when suddenly something spasms so sharply that I cry out in agony - and then it’s gone. These moments create anxiety, fatigue, and uncertainty, overlapping both physical and emotional pain.

Other times ‘she’ appears exactly as you would expect her to: from a seemingly obvious reason like exercising more than usual, or a funny kink in my neck from sleeping in a weird position. When I feel this kind of pain, it doesn’t even surprise me, and it usually subsides with a little stretching, but it always makes me feel cranky and frustrated.

And then there have been times when the pain comes and doesn’t go away - for days or weeks or years. Even with exercise or stretching or massage, it gets worse and worse, becoming chronic. And then I just feel helpless and sad.

So what to do?

There are many ways to calm down both physical and emotional pain, however, in my opinion,  the first step is to STOP and LISTEN.

Stop what you are doing, and find a way to rest for a while. Listen to the pain, breathe into it, and try to relax the whole body. Give yourself a break, but don’t give up!

It seems obvious, but I think a lot of us are so used to living with aches and pains, that we often stop listening, and force ourselves to ignore it and push through the discomfort. This usually doesn’t help, and can even lead to bigger issues.

As for other solutions?

I highly recommend trying anything and everything (although I do NOT recommend painkillers, except for in urgent situations).

The trick is to figure out what you need the most, and take it from there. Some folks get so weak that everything hurts all the time. They need to do targeted exercises to get stronger, such as Yoga (or Pilates) for Scoliosis, or physiotherapy with a scoliosis specialist. Some folks are too stressed, so they need to stop pushing so hard and try some relaxation techniques, such as massage, or deep breathing, etc. Sometimes it is a matter of creating better lifestyle habits in areas such as sleep, nutrition, and hydration.

In previous blog posts, I have written extensively about some of the approaches I have tried over the years, and the TOPS website also details different options for supportive care, including healing modalities, exercise programs, and emotional counselling.

Beyond that, there are some tried and true things to do at home, such as hot baths, epsom salts, heating pads to relax the whole system, or ice packs and muscle rubs in the case of inflammation.

Although I have never tried it, many people recommend the small battery-operated ‘TENS’ machines (stands for Transcutaneous Electrical Nerve Stimulation). This form of electrotherapy sends stimulating pulses along nerve strands and across the skin’s surface. These impulses help reduce pain by encouraging the body to produce more of its own endorphins which act as a natural painkiller.

There are also alternative supplements, taken orally, such as homeopathic remedies, herbal blends such as Rescue Remedy, and extracts from cannabis, like CBD oil, that are becoming more readily available in many places.  

Lastly, as I become more interested in the intersection of pain and the brain - the physical and the emotional - I have started to hear stories from people who have had incredible pain-relieving results from the following techniques:

  • Trauma Release Exercises (TRE)

  • Eden Energy Healing

  • Somatics

  • Brain training (EMDR; NeurOptimal Advanced Brain Training Systems)

Go ahead and google them. Read about them. Try them.

In fact, that is exactly what I am going to do, so that I can experience what I have not yet tried -  I will report back in future blogs! So stay tuned…!

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