Thanks for posting the article thread which I read with interest. I have pasted the last paragraph as I fear as usual chronic pain sufferers will continue to live out our lives labelled as "difficult"

As a child I suffered febrile convulsions and tonsillitis, I had endless fits where my spine was curved like an upside down horseshoe and now I have a spine likened to a violet crumble with a number of thoracic vertebrae endplated and crumbling. Cervical C5 and C6 severely damaged in the 2004 car accident and have had chronic headaches since the accident. T3,4 & 6 compression wedge fractures with 30%loss & Stress fracture to S1 sustained in 2012. Fractured ribs a few times, broken my ankle, my foot, all my fingers, my shoulder over the years playing sport as I have weak bones. T5 fractured in 2011 cause unknown but think I lifted something heavy. L4,5 fused in 1977 after falling from my horse. In 1994 fused again and L4/5 &S1 fused again in 2013. I now know I have osteopenia, I lost 14 inches of my bowel through a resection following a botched total hysterectomy in 2001 due to a tumour and went from 55kg to 42kg in 4 weeks and developed peritonitis, then I developed a mass when the tissue grew back that damaged my right urethra in 2003 resulting in a stent. I have a compromised immune system following a strange foreign illness eventually diagnosed in 1988 that saw me drop from 58kg to 33kg in less than 5 weeks, subsequently I developed pernicious anaemia and take regular vitamin B12 injections. I have fibromyalgia, since 2005 I suffer frequent bowel obstructions, have neuropathy of the left arm, hand and feet. Had my 1st heart arrest in 1966 at 5, 2nd in 2008, suffered a grand mal in 2012 and have suffered with PID from 16 and had 11 emergency operations on my ovaries before I was 40 and the total hysterectomy, and yes, following a failed IVF attempt in 1996 I had my first depressive diagnosis, recovered and was medicine free (but not pain free) and started anti depressants again in 2008. Oh and I have a hernia as a result of the emergency bowel resection in 2001 which often pains me but as we have been told any more stomach surgery could result in death I ignore it. So along the way I have been much criticised, labelled an attention seeker, a drug seeker, a drug addict, anxious, difficult, angry, depressive. And now I read this last paragraph that says along the way I have learned to become manipulative and I'm prone to bargain. Bargain for what exactly? To get treatment to live a life well, wake up in the morning without pain, go and enjoy a days work without wearing a hot or cold pack on my head to combat the unremitting headache or hold the "auras" at bay. To be able to not take drugs at all and to have someone believe me just for once when I say to them something is not right. All my life I have had to fight to be believed and been in pain one way or another for nearly all my 52 years.

I hope this article is about getting practitioners to see sufferers for what they are and they are doing a disservice by not listening and treating the patient as an individual and I think it's fabulous someone is trying to get across that CRPS is real. I just worry that having all the negatives in the last paragraph will be all that medical practitioners and readers will remember. It's almost a disconnect like a paragraphic BUT. Particularly as it reads as though the author thinks someone listening to me and recording all my woes in a lengthy dialogue will enable me to overcome my debilitating chronic painful illness. Ps paragraphic Might be a made up word, my mind is not as sharp as it used to be and English was once my best subject but with all the drugs and anaesthesia I've lost it I'm sure of it so I may well be totally misinterpreting the article.


As quoted in the last page of the article
"The pain that is maldynia is often out of proportion to the original trauma. I consider CRPS to be the quintessential “maldynic” condition. The signs and symptoms of CRPS are typical of conditions associated with immune impairments and inflammation, such as fibromyalgia, multiple sclerosis, rheumatoid arthritis, interstitial cystitis, inflammatory bowel disease, and some forms of neuralgia. Maldynia is characterized by allodynia and hyperalgesia of various sorts. There may be dysvascular effects or swelling, along with sensory and motor impairments that do not follow a predictable anatomic distribution. Motion disorders, when present, do not follow the patterns of common or anatomically-specific lesions. Patients who suffer maldynia often are anxious, depressed, or both. They display common impairments of intense grief, fear, and anger. In addition, they are manipulative, prone to bargaining, and often express irrational notions of agency in the cause and course of their maldynia.

Clinicians tend to mistrust patients with maldynia and may classify them as malingerers. A patient may be mistakenly labeled as “crazy” when he or she fails to respond to treatment. The patient may be misdiagnosed with somatization disorder or conversion reaction. When labels have therapeutic value, they are useful. When they are applied without therapeutic value, or, specifically to exclude it, they are pre-judicial. Practitioners who cleave only to the signs of impairment that can be measured and who disregard and demean the subjective experience of the patient are performing a disservice.

The practitioner can help the patient who suffers from maldynia by documenting the subjective narrative and the sequence of events that make that narrative understandable and trustworthy. Furthermore, the practitioner can document the subjective symptoms and the objective signs in the context of maldynia, not according to the linear determination of anatomic pathways. Finally, the practitioner positions the medical record as a means of understanding the patient as a whole, not just as an injured extremity, a disease, or an anatomical deformity. The oscillatory model of pain underscores how the experience of maldynia is more than the sum of its parts.

The practitioner must trust each patient to express and reveal the narrative of suffering that resulted in the disabling predicament of maldynia. Only then can clinician and patient parse out its causes, contexts, and effects. With hope and encouragement, patients with maldynia can learn to cope with—and even overcome—their debilitating illness."