Untreated or under-treated pain is more than uncomfortable. There are profound effects in someone who lives with pain
A 1999 Chinese study of cancer patients showed that, after taking into account the effects of cancer, the more pain someone had, the worse the effects on their health and how they functioned.
Understandably, the relationship between the severity of pain and impairment was nonlinear: patients with no pain or only mild pain were significantly better functioning than those with moderate and severe pain.
Dr. Forest Tennant has written,
“Persistent pain, which is also often characterized as chronic or intractable, has all the ramifications of a disease in that it may have pre-clinical and overt phases.
It may be intermittent or constant, as well as, mild, moderate, or severe.
The most unappreciated clinical feature of persistent pain, however, is the plethora of complications that may result — particularly if the pain is constant and unremitting”
Our doctors are more likely to listen to us and treat our pain if they can see evidence — and as people with pain, the more we know about what the consequences are, the better we can work to prevent them and search out more appropriate tools for our pain toolbox.
Pain steals the resources we need to get through our days.
Let’s define some of these losses by looking at three general areas:
- Neural and brain changes;
- Physical damage (cardiovascular, respiratory, immune system); and
- Social and psychological effects.
NEURAL AND BRAIN CHANGES
Pain is serves as a warning; the feeling of pain triggers a fight-or-flight response, telling us that we’re in danger and that we need to fix whatever is causing us injury.
If the pain continues, our body and brain don’t understand why, and the sensation of pain is increased to get our attention and make us fix the problem.
This is the neural change with which most doctors are probably familiar, the adaptation our nervous systems make when pain persists.
The Society’s Pain Management Medical Resource Guide describes it this way:
“A cardinal feature of EDS is pain. At first there are just small pains; but acute pains may accumulate, then become continual and chronic.
There may be a major dislocation of injury to start the cycle; but without adequate treatment, persistent pain can change the nervous system in a process that is difficult to reverse.
By lowering the threshold for pain signals, chronic pain becomes harder to treat.”³
We are subject to chronic pain in two forms, not only the normal, burned-into-nerve pathways type of pain commonly called chronic pain, but also chronic acute pain: we don’t injure the tissue around our joints once, but continually, every time a joint slips, day in, day out.
This is particularly crucial to remember with EDS, because it’s nearly impossible for us to prevent acute pain.
The connective tissue weaknesses we’re born with affect the molecular structures that protect our body tissue from stretching too far.
Not only do our joints dislocate fully or partially which may hurt in themselves; all the tissues around our joints (and on into the muscles, tendons, and fascia that are connected to those joints) are stretched beyond the ability of the tissue to hold itself together, so those tissues are injured in a myriad of microscopic tears. Over and over and over.
Even nerve pathways and neurons can be disrupted when tissue stretches too far, something else our brains will likely interpret as pai
It’s not just our neural net that changes. It turns out our brains adapt, too, but in ways not directly associated with pain.
In a healthy brain, the various regions maintain a balance; when one region becomes active, the others calm down.
In people with chronic pain, a front region of the cortex that is mostly associated with emotion never calms down, staying fully active all the time.
This wears out neurons and alters the connections between neurons; when neurons fire constantly, they can even die out from such intense activity, causing permanent damage
This continuous dysfunction in the equilibrium of the brain can change the wiring forever and could hurt the brain. [The changes] may make it harder for you to make a decision or be in a good mood to get up in the morning. It could be that pain produces depression and the other reported abnormalities because it disturbs the balance of the brain as a whole.
These changes result from the constant sensation of pain; they reflect the suffering of perceiving pain and the ways our bodies try to cope with that suffering. Peripheral and spinal cord nerve systems reorganize their interactions because they’re constantly in use. Those systems then affect the cortex itself, and all of them continue to try to negotiate daily life under the barrage of continual pain.¹⁰
The stress of pain also affects physical systems.
It’s been documented that acute untreated pain after operations increases the risk of
- lung collapse,
- respiratory infection,
- myocardial ischemia,
- infarct or cardiac failure, and
- thromboembolic disease.¹²
And persistent pain profoundly affects our endocrine, cardiovascular, immune, and musculoskeletal systems.² ¹³
When pain is unending, there is an increase in the level of cortisol, the primary stress-induced hormone.
Some cortisol is necessary for the immune system, but when the level is raised for long periods, cell function in the immune system and kidney is compromised and the immune system doesn’t work well, operating at less than capacity.
This affects overall quality of life, as well as the ability to fight infections and heal. There is evidence that these immune system effects of chronic pain may speed up growth of cancer cells.¹⁴
In fact, chronic pain may even reprogram the way genes work in the immune system.
A study at McGill University found that chronic pain changes the way DNA is marked in the brain and in T-cells, a type of white blood cell essential for immunity.
Moshe Szyf, a professor in the Faculty of Medicine at McGill, said,
“We were surprised by the sheer number of genes that were marked by the chronic pain — hundreds to thousands of different genes were changed.
We can now consider the implications that chronic pain might have on other systems in the body that we don’t normally associate with pain.”¹⁵
SOCIAL AND PSYCHOLOGICAL EFFECTS
The fight-or-flight response to pain was a useful evolutionary aid for self-preservation. But fight-or-flight isn’t very useful in the modern world, and next to useless for chronic pain.
Common consequences of untreated chronic pain can include
- decreased mobility,
- impaired immunity as already discussed,
- decreased concentration,
- sleep disturbances, and
- anorexia.¹⁶ ¹⁷
As a result, those of us with chronic pain — with or without the contributions of Ehlers-Danlos — face social isolation, dependence on care givers, and impaired relationships with friends and family.¹⁸
We’re four times more likely than those without pain to have depression or anxiety.¹⁷
Chronic pain changes our behavior. When part of the cortex is firing constantly, not only our emotions are affected.
The cortex also plays a role in memory, attention, and consciousness, so it’s as though we are multi-tasking all the time, which can make concentration difficult. Simple decisions and human interaction become more complicated.
Chronic pain affects our sleep, not just because we hurt; pain interrupts our usual wake/sleep cycle. And not getting enough sleep makes pain worse, pain and sleep cycling around each other.¹⁹
Ehlers-Danlos sleep is also disturbed by adrenaline rushes that result from the physical threats of dysautonomia as well as from shifting pain.
When we don’t have control over our pain, our brains become hyper-vigilant and anticipate future pain.
Chronic pain sets up a continual level of anxiety.²⁰
This anxiety is a completely normal response to repeated, unpredictable, and inescapable bouts of pain. Experimenters have demonstrated this in animals and shown that when a creature cannot escape or control expected pain, stress levels climb ever higher.
The article references this previously blogged study: Psychiatric disorders in EDS strongly associated with pain