Dear Mariam, pobably you know the Mayo Clinic Study, which reported " an incidence rate of 5.46 per 100,000 person years at risk, and a period prevalence of 20.57 per 100,000. Female:male ratio was 4:1, with a median age of 46 years at onset. Upper limb was affected twice as commonly as lower limb. All cases reported an antecedent event and fracture was the most common trigger (46%)."

Article Complex regional pain syndrome type I: Incidence and prevale...

I agree with Karl F Masuhr. 

Dear both.

Thank you for your kind reply. I totally agree with Karl's reply and Maria's secondment.

However, being a rare disease, I am trying to find answers to

1. How many CRPS patients' statistically are affected possibly in each and every country per annual period prevalence (not a decade period prevalence).

2. Why do medical officers easily diagnose such patients with DSM V, ICD 10? This not only stigmatizes the patients but results in unnecessary complications arising from insurance claims, if any.

3. According to Andreas Goebel clinical finding, CRPS could be more of an auto immune condition -

Is CRPS an auto-immune disease? Intravenous Immunoglobulin in Complex Regional Pain Syndrome. Andreas Goebel on the results of his latest clinical trial

http://www.bodyinmind.org/is-crps-an-auto-immune-disease/

Perhaps this could be the start of the confirmation that CRPS is not the "brain defect" but "brain training" for CRPS patients.

Still, these patients deserve to be accorded due respect for not being mentally distorted unnecessarily.

Just treat the organic issues objectively first before Andreas could come out with the cause and cure definitively.

Thanks and best regards - Mariam

Hi Mariam,

I am a Director of a Chronic Pain Clinic in Metro Toronto, Canada. I see 2-3 patients with CRPS daily. Same with my associates. It is a rare pathology, but I seriously doubt you will find yearly epidemiological data by each country. There are many theories about pathophysiology of the disease, but none of them, including the autoimmune one is conclusive. It is not a psychiatric diagnosis, but rather Neurological. Obviously, you would expect many patients with CRPS have Depression and Anxiety as with all Chronic pain patients. In our country, diagnosis is usually made by Pain Doctors, Physiatrists, Orthopedic Surgeons, and Neurologists. We desperately need more research and new medications to treat this very difficult to manage condition. Unfortunately, since the prevalence is fairly low, Pharma Companies are not is a rush to come up with new medications and studies. We all hope one day somebody will find out exact mechanism disease progression so we can treat it more successfully.

 Hi. I am well-qualified physician with 27 letters of postgraduate diplomas etc behind my name. I apologise if this sounds brash. I have been under the treatment of western Midson pain specialist for five years.  They have no further treatment options for me for this condition known as our RSD (reflex sympathetic dystrophy) or on the new classification CRPS type 1 (centralised) with  Gross autonomic dysfunction. It is severe and am unable  to eat, your note it Sitra without gross autonomic system discharge. I have been discharge from the pain clinic as they feel there is nothing more they can do for me. I am now in the palliative committee which consists of various panels  have been discharge from the pain clinic as they feel there is nothing more they can do for me. I am now in the palliative committee which consists of various health   Specialists. E.g. Occupational therapists pain specialist endocrinologists it etc. I am depressed and have daily suicidal thoughts.  Any thoughts or suggestions would be great for the excepted. I have arranged a suicidal package, but would not yet like to engage it. 

Hi Igor,

In your professional capacity  do you, your junior or psychiatrists readily diagnosed those with CRPS 1 especially with depression and anxiety with somatoform, psychosomatic or other mental disorders? If not, what are your likely secondary diagnosis, if any?

Hi Erich,

I have replied in your own page to hang on and I will be there for you - not to use the suicidal package but lets find the magic bullet for CRPS  / RSD 1 together - worldwide, wherever we could find it. As long as we are united, we will FIND the panacea to this evasive malady, believe me! I will always be there for your Erich!

Hi Jane,

True, face to face meeting is not effective. Reading needs more coaxing as these patients are mainly desperados. Support group is limited to those within your clinics / hospitals premise. Online support group may work depending on whether the group could answer your cure questions and be positive throughout the online session.

My concern is mainly the labelling or stigmatization by medical personnel that dampens the will to continue to live. Instead of just the primary diagnosis of CRPS 1 / RSD, the inclusion of secondary diagnosis of somatoform, psychosomatic and other mental disorders are the death penalty for people like Erich in continuing their otherwise "normal" life. Most of them are professionals and experts like Erich!

Definitely palliative care or cure is a NO-NO as it is synonymous to euthanasia or advanced medical directive (AMD) - to end one's life without any defence!.

Thank you all for your great inputs!

I am still searching the cure for this rare pathophysiology. I would love to have ANYONE in the world join me in this rare occasion to find the panacea to this CRPS 1 / RSD issue - once and for all!

Pharma Companies are welcomed too - you have more to benefit than to observe this gap being filled by your next door rivals!

***

I am still waiting for more input from other countries' data on the annual prevalence, if any, to facilitate the Pharma Companies to get into this issues more positively.

Perhaps - WHO (World Health Organization) could sponsor such research so that CRPS 1 / RSD would no longer be a rare disease after all? Or nobody would die before the panacea or "magic bullet" is found!

Thank you and best regards - Mariam from Singapore

Hi Jane,

Pardon me if I "misquote" you on the face-to-face meetings being impractical and not ineffective. Nevertheless, the intention was similar.

I would be more careful next time when quoting you or our other great colleagues.

Thank you and best regards - Mariam 

Dear Jane,

The pleasure is mine.

We are professionals after all and human mostly. To err is human to forgive is divine.

Cheers - Mariam

I think, sadly, that a "cure" is not in the offing. "Magic bullet" thinking is counterproductive. Improvement takes time and hard work.

 CRPS or RSD starts with very slight dysfunction of the autonomic system. I have seen a few advanced cases, but many early cases when working in Colorado Springs (elevation 6,300 ft.) I have also, I think, prevented many cases. I am partial to the "initial tissue hypoxia" theory, which postulates that initial tissue hypoxia leads to abnormalities of the afferent sensory input, and in turn, leads to abnormal processing of the afferent sensory input, whether in brain, spinal cord, or both. This progresses to increasing errors of central processing which become connected to inappropriate autonomic responses, hyperalgesia and allodynia.

Why do I invoke hypoxia? 1) all my RSD patient were smokers ( which causes decreased blood flow in limbs every time they smoke) 2) many had iced their injuries inappropriately, for hours at a time, in a manner that would significantly decrease blood flow. 3/ many had immobilized (often self-immobilized) a limb, which decreases blood flow and increases edema. (People self-immobilize after an injury because they believe that the pain with motion represents further damage to their body).4) My patients were living at and above 6,000 ft elevation....water boils at 200 F. and the normal pO2 is down to 82%.

All my patients developed autonomic signs suddenly, more or less overnight, but not immediately after injury. The early autonomic signs were subtle but real, and have included: Inappropriate sweating of part or all of the hand or foot; unprovoked severe episodic vasoconstriction with blanching and pain, acute, lasting minutes to hours, but repeated; sudden very localized flushing; unexplained episodic localized piloerection. Of course, these are also accompanied by pain with motion, hyperalgesia, and allodynia. 

  The only known treatment for central processing disorders is the promotion and repetition of normal processing. The goal is to reestablish normal brain/spinal cord pathways and extinguish abnormal ones.The representation of the affected body part in the brain has to be normalized.  The treatment of early signs is painful but effective: use the limb and ignore the pain. It works. The physical therapists desensitize to allodynia and hyperalgesia with progressive exposure to friction. They do repetetive weight bearing and insist on the performance of painful range of motion.  Remember: these are patients in whom we have ruled out structural abnormality. We cannot damage them with motion. They cannot damage themselves with motion. It just hurts. And we do not use opiates, because we do not want opiate-induced hyperalgesia and allodynia to  make it harder for the patient to tolerate the treatment. Sometimes gabapentin or a similar medicine helps slightly.

The result of this treatment, in my experience, is to limit the symptoms to the limb where they started, and reduce them over time to a tolerable level. For example, at the outset, one of my patients had exquisite pain and extreme episodic temperature and color change in the hand, progressing up the arm. After about 6 months of treatment, symptoms had completely resolved in her hand.  She still gets a sensation of painful tightness around her upper arm at times. From the width of a blood pressure cuff, this has decreased to the width of a rubber band. She is using her upper extremity actively and strengthening it. She never stayed out of work.

I do not treat the advanced CPRS that the researchers and pain managers in that field see. Patients have come to me with advanced symptoms, (and I refer them on) but not one of my patients has ever advanced to that level under my care. In general, my advice for any central processing dysfunction would be to challenge it, over and over, trying to reestablish normal control of that function by continuing through the symptoms with normal activity, as much as possible. This is the opposite of the usual approach, which is to avoid possible triggers. Avoiding possible triggers seems to allow the spread of symptoms.

I hope this is helpful to some, if not pertinent to treatment of advanced cases. I have personally never seen a case that advanced to global autonomic dysfunction. There are specific diseases of global autonomic dysfunction that need to be considered in the differential diagnosis of someone with symptoms of that condition. Functional MRI studies of the brain might be very helpful in identifying the signal processing problems in those few patients who present with global autonomic dysfunction.