The No.1 Myth about Pain is exploded with 5 Simple Facts

What do we think we know about pain?

The traditional theory of pain suggests that an isolated pain system carries messages from pain receptors in the skin to a pain centre in the brain. This is called the Specificity theory and it is commonly taught as fact, rather than theory.

Contrary to popular belief, the connection between a damaged organ and pain is not straight forward and direct.

Consider the highly variable link between injury and pain: injury may occur without pain, and pain may occur without injury. - Click to Tweet

"We are learning to accept that pain is not produced by the simple activation of a single, specific, isolated signalling system but is subject to a series of controls acting in the context of a whole integrated nervous system." (The Challenge of Pain p.295)

Examples of the Variable Link between Pain and Injury:

1. Injury without Pain (Congenital Analgesia)

Some people are born without the ability to feel pain.

Without pain acting as a warning and a teacher the following situations can occur:

• Biting into tounge while eating.
• Failing to feel pain when walking on a leg with a cracked bone would cause you to walk on it until it broke completely.
• Failing to feel discomfort when remaining in one position too long would mean that you don't shift your weight and sustain damage to your joints and ligaments.

The fact damage can sometimes be present, without pain being experienced, shows that pain is not a simple signalling system with a direct and straight-forward relationship with a site of disease/damage.

2. A Delayed Response to Pain (Episodic Analgesia)

When injured, it is quite common to feel no pain until hours afterwards.

It doesn't seem to make a difference if the injury is minor or severe, a graze, or a severed limb. And it's not that pain is noticed and then brought under control. There is simply no pain.

Many of us have accepted the delayed pain response as a common phenomena, allowing us to accept that pain is a complicated thing.

It starts to become clear that there are a number of complicated processes that determine the intensity and duration of pain - factors which bear little relation to the scale of ones physical injury.

Newer theories of pain such as The Gate Theory look at what activities of the nervous system intervene between injury and pain perception and start making sense of why the relationship between injury and pain is so variable.

3. Pain without Injury

There are some pains that do not appear to result from a direct relationship with injury or damage.

For example:

• Tension headache and migraine are two examples where the origin and cause of pain is not known or understood.
• Trigeminal Neuralgia - where a light touch to a trigger point provokes an agonising stab of pain.
• Crippling lower back pain where diagnostic techniques can find no damage.

All of these pains are likely to result from a "failure in the function of central control mechanisms." (The Challenge of Pain, p.9) see also What are Functional symptoms?

Traditionally these pains are a source of great frustration, but as pain begins to be recognised not as a symptom of damage but a problem in it's own right, these pains prompt a greater understanding of the nature of pain.

4. Disproportionate Pain

It is commonly assumed that pain is a simple mechanism to communicate a warning, but in many cases the pain response is not proportionate to the problem; the problem being far more severe or far more trivial than the pain it provokes.

For example:

• Passing a kidney stone is famous for being excruciatingly painful, but from a mechanical point of view, passing a kidney stone is a trivial event.

• There are also relatively small number of nerve impulses sent to the spinal cord when a kidney stone passes through the ureter - despite this, the effect in pain is gigantic.

Clearly, severe pain does not automatically indicate the body is severely damaged.

5. Persistent Chronic Pain long after the injury is healed

Persistent pain can be experienced year in year out long after an injury has healed.

Examples include:

• Phantom limb pain "where the limb is incapable of producing pain, yet pain is constantly felt, though no injury is occurring." (The Challenge of Pain, p.10)

• Peripheral nerve damage that produces excruciating burning, shooting, stabbing pains that may occur spontaneously long after the tissues have healed.

• Minor commonplace injuries can also provoke the onset of severe pain that can persist for years; pain that may take the form of spontaneous attacks not dissimilar to those described above.

This is in direct contrast to pains which prevent an injury or enforce inactivity and rest. In these cases the pain serves no biological purpose.

"Chronic pain can even be detrimental to the survival of man. The pain can be so terrible, so feared, that people would sooner die than continue living with it."  (The Challenge of Pain, p.12)

It is not helped, that while the traditional understanding of isolated, direct, and easy-to-understand pain persists, support and understanding for chronic pain suffers is limited.

"Acute pain which is the basis of the traditional training of physicians is wonderfully controlled by our modern day drugs. Chronic pain, however, requires a new set or rules, and we are still novices in these new approaches to pain." (The Challenge of Pain, p.273)

Happily, examples 1 - 5 above contain clues for the control of pain in all it's shapes and sizes, and pain is no longer considered a symptom, but a syndrome in it's own right. - Click to Tweet

Sadly, for those with pains we don't understand, or for which we have no adequate treatment, new solutions for pain relief can't come soon enough.

Fighting for Legitimacy: What is the impact of being labelled a scrounger?

Yesterday I read an article by Penny about the “Psychological impact of being labelled a scrounger” which has prompted me to share with you the following realisation.

All sick and disabled people are beginning to experience the same social implications that people with MUS (Medically “Unexplained” Conditions) suffer:

• Lack of Support
• Uncertainty, 
• Lack of credibility and legitimacy, and 
• An impact on self and social identity, to name a few. 

According to Dr Sarah Nettleton, who has researched the impact of not being given a disease label or diagnosis, these are just some of the themes which characterise the MUS experience. In this article I will be explaining that the MUS experience is no longer exclusive to people with MUS.

In this article will draw some parallels between the MUS experience and what is happening to all long-term sick and disabled people in this country. This is my analysis, using some of the headings from Dr Sarah Nettleton’s research paper:

Lack of Support

• Disabled people are facing the removal of recognition, understanding, and compassion. Society as a whole is being told by newspapers and politicians that sick and disabled people are undeserving scroungers. The support that was once in place within society, both in spirit and in practice, is being rapidly dismantled. Disabled people are more likely to face interrogation and abuse than support and understanding.
• People with disability are increasingly experiencing feelings of isolation, desperation, and the sense there is no where to turn to for help. The government is not listening, the general public is widely misinformed and hostile towards disabled people. Meanwhile, the DWP (Department for Work and Pensions) — who administers disability benefit and, in so doing, authorises the social “passport” that gives ones disability social legitimacy — is not just rewriting the definition of disability but undermining the credibility of all benefit claimants.

Uncertainty

• The Conservative-led Government is cutting services so fast and so deep that it is impossible to plan for the future and know how to understand and accommodate the proposed changes in the Welfare Reform Bill. We can’t calculate their effect on our lives, we are uncertain about whether we will ‘be okay’. 
• When the government first published its intention to “reform” Disability Living Allowance (read “abolish”) and replace it with PIP (Personal Independence Payment), its intention was clear: reduce the number of claimants by 20%; ignore the fact that fraud and departmental error adds up to a mere 0.5%. So while we could be sure that the government intended to reduce the eligibility requirements we were uncertain, and remain uncertain, exactly how eligibility will be established and how we will be judged. (“Uncertainty is compounded by lack of information”).
• Disabled people are asking themselves “when will this reform effect me?”, “how badly will these cuts effect me?”, “How can I possibly cope with more stress and uncertainty?” (Disabled readers please contribute to this list in the comments section below). 
• With uncertainty about how government cuts will effect the support and services, planning for the future becomes impossible.

Relationships with doctors

• On the one hand doctors are given more responsibility by the government (managing their budgets) and on the other hand are told that their medical opinion no longer has the authority or reliability with which to base a decision for benefits (instead an independent company is employed). Where patients need reassurance and support more than ever, doctors are being worn down and disenfranchised.
• In the same way a person with a medically unexplained condition seeks acknowledgement of their experience from their doctor, a disabled person now arrives in the same position: equally anxious, potentially suicidal, and uncertain about the social legitimacy of their medical condition. What both groups now share is an emotionally fraught situation:
• The patient is wanting the doctor to authorise their experience of disability with words that can be universally understood: by the nosy neighbour, the government agency, the employer, the family, and the patient themselves who is suddenly feeling much less confident about explaining their condition to themselves and others.
• The doctor is wanting to make the situation better but is powerless to do so and struggling to accept their limitations because they went into the profession to ‘fix’ problems and ‘make people better’.

Lack of credibility and legitimacy

• I think this is the no. 1 biggest issue facing people with Medically Unexplained Illness, and now the whole population of sick and disabled people. When you don’t get better, people want to know why. When your health limits your ability to function, people want to know why. But people with health problems “just want permission to be ill”. Permission to have a bad day without being labelled a faker. Permission to have a good day without being labelled a scrounger.
• The software designed for ATOS Healthcare Work Capability Assessments has been described as reminiscent of UNUM Insurance “disability denial software” because we are facing a check-box system determining the legitimacy of a persons medical condition and, in the face of extra cash per failed claim, an incentive to contradict the informed opinion of a GP or specialist. Meanwhile, the media, politicians, and even the DWP are publishing misleading information about the credibility of sick and disabled benefits claimants.

Influence on the ‘self’ and social identity

• Although the sick and disabled recognise the authenticity of their symptoms, as verified by their doctors and their daily experience, they can’t help questioning themselves when they have a good day. Many may find themselves asking “Do I deserve disability benefit?”, “I feel better than I did yesterday, am I a scrounger because I am finding it easier to move today?”.
• In fact I think the impact on a persons sense of self, personal wellbeing, and social identity is huge. If you are effected by any of these issues I would appreciate it if you would comment on this in the comments section below.

Searching for explanations/justice

• Although some people can accept that reform may be needed, it's still important to them that they see changes that reflect the experience of disabled people and their needs. The government have scared disabled people and their friends. They are asking:
• “How will eligibility be decided?”
• “How will you protect the wellbeing of disabled people throughout the process of reforms?”
• “How can you commit to cutting 20% of claimants on the assumption that half a million people don’t ‘deserve’ or ‘need’ to access the funding, care and support they require to function and live ‘normally’, despite their disability?”

To conclude, a sinister shift has occurred in the fabric of our society, spurred on by political propaganda. It is no longer enough to have a medical diagnosis or receive disability benefit. The existence of disability is under dispute. If you are effected by any of these issues, I welcome your comments below and would especially love it if you expanded on any of the points I have made above.