Originally Posted by fmichael

Dear Debbie -

What you are anticipating must be very frightening. I wish I could say unequivocally, that there was no chance of any organ failure with CRPS. The truth is, aside from anecdotal reports here and elsewhere on the Web, there appears to be very little in the medical literature on the subject. The closest I could fiind was this 1998 abstract of an article by Ralf Baron and Wilfred Jänig, when they were still publishing in German, [Pain syndromes with causal participation of the sympathetic nervous system] [Article in German], Baron R, Jänig W, Anaesthesist. 1998 Jan;47(1):4-23:

Klinik für Neurologie, Christian-Albrechts-Universität zu Kiel.

The efferent sympathetic nervous system is organized into subsystems that innervate and regulate via separate peripheral sympathic pathways the different autonomic target organs. This review discusses mechanisms through which this efferent system may be causally involved in the generation of pain. Clinical pain syndromes in which this may be the case are "complex regional pain syndromes" (CRPS) type I (previously reflex sympathetic dystrophy) and type II (recently causalgia). The "sympathetically maintained pain" (SMP) is a symptom (and not a clinical entity) that can principally also be present in other pain syndromes. An explanatory hypothesis, which may explain the clinical phenomenology of CRPS (different types of pain, swelling, autonomic, motor and trophic changes) and the mechanisms involved, is described and discussed. This hypothesis consists of different components that either have been tested and verified experimentally or which are still hypothetical. The hypothesis consists of changes in the primary afferent (nociceptive and non-nociceptive) neurones (sensitization, ectopic impulse generation) and of the neurones in the spinal cord (preferentially in the dorsal horn) which are secondary consequences of the changes in the primary afferent neurones ("central sensitization"). These changes are not specific for SMP. The centerpiece of the hypothesis is a positive feedback circuit that consists of the primary afferent neurones, spinal cord neurones, sympathic neurones and the pathologic sympathetic-afferent coupling. This coupling can occur directly via noradrenaline (or possibly another substance) at different sites of the afferent neurone (at the lesion site, remote from the lesion site in the periphery and in the spinal ganglion). The direct coupling requires that the afferent neurone expresses adrenoceptors. Indirect coupling can occur via the vascular bed or otherwise, e.g. by changes of the neurovascular transmission. The activity in the sympathetic neurones to the affected extremity can change. This change does not consist of a generalized increase of sympathetic activity but of a change of the reflexes (e.g., thermoregulatory and nociceptive reflexes). From this follows that the pathophysiologal processes operating in CRPS may occur at four levels of integration that interact with each other: effector organ [an organ that produces an effect, e.g., contraction or secretion, in response to nerve stimulation],* peripheral afferent and sympathetic neurone, spinal cord, supraspinal centres. Recent experimental investigations on rats show that the sympathetic nervous system is possibly also causally involved in the generation of inflammation and inflammatory pain. The mechanisms by which this occurs are different from those operating in SMP during CRPS. [Emphasis added.]

PMID: 9530442 [PubMed - indexed for MEDLINE]

* http://www.ndif.org/public/terms/13549-organ (NDI Foundation: nephrogenic diabetes insipidus)

http://www.ncbi.nlm.nih.gov/pubmed/9...m&ordinalpos=8

Then I used a PubMed function looking for "related" articles, and after going through over a hundred listings, found nothing on the effect of CRPS on organs, I did find, among other articles dealing with blood flow in the extremities, one I didn't recall reading before, it is a deep and amazing article that should be required reading for anyone in the area, Pathologic alterations of cutaneous innervation and vasculature in affected limbs from patients with complex regional pain syndrome, Albrecht PH, Hines S, Eisenberg E, et al, Pain 2006;120:244-266 full text at http://www.rsds.org/2/library/articl..._PAIN%2006.pdf:

Abstract
Complex regional pain syndromes (CRPS, type I and type II) are devastating conditions that can occur following soft tissue (CRPS type I) or nerve (CRPS type II) injury. CRPS type I, also known as reflex sympathetic dystrophy, presents in patients lacking a well-defined nerve lesion, and has been questioned as to whether or not it is a true neuropathic condition with an organic basis. As described here, glabrous and hairy skin samples from the amputated upper and lower extremity from two CRPS type I diagnosed patients were processed for double-label immunofluorescence using a battery of antibodies directed against neural-related proteins and mediators of nociceptive sensory function. In CRPS affected skin, several neuropathologic alterations were detected, including: (1) the presence of numerous abnormal thin caliber NF-positive/MBP-negative axons innervating hair follicles; (2) a decrease in epidermal, sweat gland, and vascular innervation; (3) a loss of CGRP expression on remaining innervation to vasculature and sweat glands; (4) an inappropriate expression of NPY on innervation to superficial arterioles and sweat glands; and (5) a loss of vascular endothelial integrity and extraordinary vascular hypertrophy. The results are evidence of widespread cutaneous neuropathologic changes. Importantly, in these CRPS type I patients, the myriad of clinical symptoms observed had detectable neuropathologic correlates.

PMID: 16427199 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/sites/entrez

Not coincidently, I found the last article when I searched PubMed for "arteriole CRPS" and it was the ONLY article that came up. And the search occurred to me a couple of weeks after my neurologist advised me that if we were going to look for an organic cause of my striking loss of organizational abilities, spatial reasoning and the ability to calendar simple things in my head (all under the heading of executory functioning), on the one hand, and on significant and increasing memory issues, from not unusual word recall problems, to having to sneak a look at my check book to avoid transposing the 5 digits in my street address and having no memory of something I had read the day before, to literally the ability at times to form new memories, on the other hand. What he said was, if I wanted to focus specifically on he effect of CRPS induced vasoconstriction in the brain, we would have to look at the arterioles, the smallest blood vessel with any muscle tissue that could respond to nerve signaling. And that would require a brain CT angiogram.

However, with a lot of nuclear studies and the like under my belt in the last few years, including a coronary CT angiogram, my internist is advising me that this is something I may want to give some reflection to jumping into. That said, if you are seriously concerned about the risk of specific organ damage secondary to CRPS, I would suggest you consider discussing with your physicians a CT angiogram of said organ(s), with specific emphasis on the arterioles; I would also show them Pathologic alterations of cutaneous innervation and vasculature in affected limbs from patients with complex regional pain syndrome, Albrecht PH, Hines S, Eisenberg E, et al.

be well,
Mike


ps For the last few weeks, I've been working on a form that has required me to basically go over every document I've retained for the last 20 years, exclusive of client files now in (expensive) storage. Two things were particularly hard. One was experiencing the sense of hope I felt for "my life" before this hit me. The other was all of the expectation that I put in treatments that didn't pay off along the way.

Then the other night, I was reading an article when these words leapt off the page:

Hope is the enemy of acceptance.

Bottom line, sometimes we can strive to understand and change things, other times we just have to maintain awareness, take notes and go with the flow, even if that flow leads us back to the source out of which we arose in the first place.