Good morning, Friend.
The pain from the devious trio of CRPS, AVN / ON * and SLE ** has been complicated by a summer cold. Fred is toying with the same summer cold. He also plays at being in a snit.
You can either pull off a snit or you cannot. I'm just sayin'.
Most of my blog traffic comes from searches for "XXX Porn Live Naked Women."
That would be, I suppose, because I once accidentally titled a post: XXX Porn! Live, Totally Naked Women! XXX Porn!
Anyway, what has been humbling since that accidental entitlement are the number of Folk who decided to hang around Marlinspike Hall after achieving sexual satiety. Since they didn't get here by virtue of searching for information on odd neurological (CRPS), bone (AVN/ON), or autoimmune disorders (SLE), the many acronyms I toss about must sometimes be confusing. Also confusing, of course, is trying to figure the layout of The Manor and the latest in La Bonne et Belle Bianca Castafiore's hijinks. The only cure for that confusion is to read, read, read.
But I will try to clear up the medicalese, and with my usual clarity, too.
CRPS or RSD refers to Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy. CRPS is the more accurate term, by far, and is further divided into Type 1 and Type 2. Wikipedia, excerpted at the end of this post, does a fair enough job synthesizing the utter weirdness by which this disease is characterized.
For what it's worth, if you have CRPS for any real length of time, you will not just exhibit the symptoms of pain, edema, spasms, distorted spatial perception, and changes to skin, bone, nails, and hair -- you will also be certifiably Mental. Depressed? Well, of course. But I mean MENTAL. You might be so desperate for distraction that you will coopt the work of a dead Belgian cartoonist and author, fashioning your own sad virtual territory from his original brilliance. You might hurt so badly that you sleep in strict 45-minute discrete segments and are so fatigued that you just don't know how to free The Submarine from the moat's algae overgrowth, much less fathom the intricate rules of animal husbandry necessary to maintain the herd of miniature Jamaican llamas (the Kingston strain). Some people are so addlepated from allodynia that they take to their sheetless, coverletless beds with their arms and legs held carefully in the air, looking very much like a dead insect lying on its little dead back. Mental.
I hurt my darling partner's feelings two nights ago when I called him a "G_d-damned, ****-sucking a$$hole" because he caused the air near my legs to move. He was folding towels roughly 10 feet from my feet at the time. It just flew out of my mouth before I could stop it. It's tough to then try and fashion anything remotely like an acceptable apology. And I can't take it back. Mental.
If you think that's bad -- well. Hmm. I've never shared this before. Hmm.
Way back in the beginning of our CRPS saga, before we had ever heard of it, I had just had three major surgeries, one of which was to repair a badly broken ankle. I was home, but confused by the pain and lack of sleep. I had been in the hospital for weeks, and that left me squirrelly to begin with. Two of the three surgeries had been due to what I now know was a Sentinel Event. Anyway... Fred was a wonderful nurse, as I was restricted to a rented hospital bed. (O! The horror of that mattress!) From baths to bedpans, he did it all, and without too much complaint. He could not fathom my continuous complaints of horrible pain, pain that I claimed was getting worse instead of better. I had plenty of pain medication, and was continually on the verge of unconsciousness from it, so what was I bitching about? Part of his duties was the removal and application of a splint to my right leg. It was our initiation into the fashion world of gray plastics with blue Velcro trim.
That splint came to represent a lot of stuff. It brought unspeakable pain to me, and unspeakable frustration to Fred.
When you experience a substantial amount of pain, you have been trained by life and nature to look for (and eliminate) its cause. Our nightly mutual torture ritual, when Fred would align my right lower leg and apply the hard plastic splint, always brought me to tears. I often screamed. He, in turn, claimed sometimes that he had not even touched me or that he had only lightly brushed a toenail. And because life and nature had trained me, I looked for an explanation for this obscene pain.
I decided that Fred was doing something -- on purpose -- to cause it. Seriously, I did. I even emailed my brother and a friend, even said as much to my pastor. Yep -- there I was, trapped in a hospital bed, unable to defend myself against this demonic physical abuse. I was James Caan and Fred was Kathy Bates. It's a testament to Fred's character and to my insanity that no one believed me. Fred didn't know that I'd labelled him an abuser until the day the CRPS was finally "officially" diagnosed, when I broke down in tears. Tears of relief that there was some external explanation for all that misery that did not involve loved ones trying to kill me...
Mental.
This blog was birthed from the pain of CRPS but has mostly served as a home for the craziness it induces. It is hard, I know, for you folks to believe or understand that severe pain can be constant, especially as you've read about opiates and other comfort measures. Equally difficult, and not just for laypeople, but for most non-specialist health professionals, is to deal with what has become a central nervous system disorder when what "presents" looks so purely orthopedic, or vascular.
Some people have told me they understand better since seeing this short little art film I made back in May. A woman with CRPS out in California Land has promoted it as an actual resource to her CRPS support group and to her doctors. Makes me wish I hadn't been so flippant in making it, but what-the-hey...
It's important to recognize that this is just how MY hands and feet look (a few months later, and my feet/legs are about the same, but my hands and forearms are much worse). Some people don't have as many visual clues that something has gone awry with their neurological system, some have more. Most people have symptoms restricted to one limb. CRPS can and will "spread," however, which is how I ended up with all four extremities afflicted, as well as the bottom part of my face. That is how, for example, I am now diagnosed with both CRPS Type 1 and Type 2. The sites of original injury, my lower right leg and my left forearm/hand, represent Type 2 (causalgia), and have demonstrable nerve injuries (peroneal, tibial, ulnar). The left leg and right arm (plus the gorgeous visage) all represent the concept of "spread" and happened over the years since the original injury. We like to call the original injury The Noxious Event. (You have to wrinkle your nose as if smelling the scent of a dozen rotten eggs to give the expression its total oomph.) Umm, yeah, so my areas of "spread" would be CRPS Type 1, or what folks used to misrepresent as RSD, but really it just means that there is no identifiable nerve injury.
Is that clear as mud?!
Most importantly, if YOU have CRPS, don't get all boo-hoo-ey and think that you will end up like me. Turn into a proactive (but polite) maniac and make sure you are promptly and correctly diagnosed, referred to a neurologist with experience in CRPS who will start treatment straight away. Just DO IT. There is an excellent chance, in that initial window of opportunity, for a cure, for a remission -- but you will likely have to take the lead. So just DO IT. It's confusing, it's hard, and you will meet your share of idiots along the way -- but do not lose focus. If I may help you in any way, please don't hesitate to email me or leave a message in the comment area. The very best place to start, and a place that will remain a great resource for you, is the RSDSA, which I urge you to join, and support. Good luck and God speed.
And don't ever stop laughing.
Complex regional pain syndrome (CRPS) is a chronic progressive disease characterized by severe pain, swelling and changes in the skin. Though treatment is often unsatisfactory, early multimodal therapy can cause dramatic improvement or remission of the syndrome in some patients. The International Association for the Study of Pain has proposed dividing CRPS into two types based on the presence of nerve lesion following the injury.
Type I, formerly known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy, does not have demonstrable nerve lesions.
Type II, formerly known as causalgia, has evidence of obvious nerve damage.
The cause of this syndrome is currently unknown. Precipitating factors include injury and surgery, although there are documented cases that have no demonstrable injury to the original site. [...]
The pathophysiology of CRPS is not fully understood. “Physiological wind-up” and central nervous system (CNS) sensitization, are key neurologic processes that appear to be involved in the induction and maintenance of CRPS. There is compelling evidence that the N-methyl-D-aspartate (NMDA) receptor has significant involvement in the CNS sensitization process. It is also hypothesized that elevated CNS glutamate levels promote "physiological wind-up" and CNS sensitization. In addition, there is experimental evidence that demonstrates NMDA receptors in peripheral nerves. Because immunological functions can modulate CNS physiology, it has also been hypothesized that a variety of immune processes may contribute to the initial development and maintenance of peripheral and central sensitization. Furthermore, trauma related cytokine release, exaggerated neurogenic inflammation, sympathetic afferent coupling, adrenoreceptor pathology, glial cell activation, cortical reorganisation, and oxidative damage (e.g. by free radicals) are all concepts that have been implicated in the pathophysiology of CRPS.
The symptoms of CRPS usually manifest near the site of an injury, which is usually minor. The most common symptoms overall are burning and electrical sensations, described to be like "shooting pain." The patient may also experience muscle spasms, local swelling, abnormally increased sweating, changes in skin temperature (usually hot but sometimes cold) and color (bright red or a reddish violet), softening and thinning of bones, joint tenderness or stiffness, and/or restricted or painful movement.
The pain of CRPS is continuous and may be heightened by emotional or physical stress. Moving or touching the limb is often intolerable. The symptoms of CRPS vary in severity and duration. There are three variants of CRPS, previously thought of as stages. It is now believed that patients with CRPS do not progress through these stages sequentially. These stages may not be time-constrained, and could possibly event-related, such as ground-level falls or re-injuries in previous areas. It is important to remember that often the parasympathetic nervous system is involved with CRPS, and a part (subset) of the parasympathetic system is the autonomic (think automatic, like blood pressure regulation or breathing or sweating) nervous system can go haywire and cause a wide variety of odd complaints that are not mental in origin. Be sure and investigate autonomic dysfunction or disorder if you think you may have one of the often distinct varieties of CRPS. Rather than a progression of CRPS from bad to worse, it is now thought, instead, patients are likely to have one of the three following types of disease progression:
1.Stage one is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm. The vasospasm is that which causes the changes in the color and temperature of the skin.
2.Stage two is characterized by more intense pain. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.
3.Stage three is characterized by irreversible changes in the skin and bones, while the pain becomes unyielding and may involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening and thinning is more dispersed.
* AVN / ON = avascular necrosis, osteonecrosis
** SLE = Systemic lupus erythematosus
