Just thought I would share:

http://www.practicalpainmanagement.c...-name-maldynia

Quite interesting. I was actually struck by the fact that near the end he said that patients may be labeled as crazy or misdiagnosed with somatization. (Which is essentially in my case meant he thought I was so crazy I was causing my symptoms.) I didn't even know anything was up, other than that he thought I should see a shrink (I refused) until I got my medical records and saw it. That was last summer, I'd still like to throttle that jerkwad.

More doctors should read articles like this so they can better understand their patients. Maybe it could help to get people with real issues diagnosed with real things rather than being bumped around the system like crazy people or drug seekers.

Interesting.....but it's very high-level scientific medical language...

Just FYI, the really interesting stuff about CRPS and your doctor's responsibility to you is all on Page 3.

Bram.

Sad for us that this is probably FAR more common with CRPS any other condition, and there are many people out there who have been treated by psychiatrists for all types of mental afflictions that are in reality not. Good for you to have escaped that wicket!

Might your real pain be a little less today,

For once, a good article. Most websites about RSD say the same exact thing but this one is different. Very interesting. Thanks!

I'd also like to see research on the kinds of treatment patients receive relative to the kind of health insurance they have. I'll wager it is an issue. For example those on Workman's comp---HMOs etc. Treatments between insurance companies like BCBS, UnitedHealthcare etc. I believe doctors react to patients depending on the insurance. Example---patient with HMO, doctor says you are a nut----same patient picks up BCBS PPO--doctors says you have RSD and I will help you control this beast-----I've personally seen this happen a few times.

It's one thing that the insurance does not pay for a particular service, but quite another being dismissed as a nut case, which tells me the doc just does not want to deal with it appropriately.

This was a problem for me, so I've seen it. I had no insurance and I was dismissed. Then I had medicaid (a particularly crappy kind too) and I was called a nut, dismissed and just let slide. But, even while on medicaid I found the doctor who is my PCP now. He started me on the path that led to a diagnosis. He wasn't concerned about the limits of my insurance, or what it was, but how to best work within those confines or how to stretch them for me. Now I have an HRA PPO and I'm sure I'll hit my out of pocket max for the year so between all my docs we just started throwing as much crap at the wall as we could to see what stuck.

I think it's a double edged sword. Some doctors automatically will treat patients differently based on the insurance they have. And often patients are limited in the quality of doctors they see by their insurance. For me that was the biggest factor for a long time.

Thanks for the informative article Tessa. It was very interesting. I've never seen this website before and really appreciate you sharing it with us. The more we learn about rsd the better. Thanks again. Take care my friend.

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."