During my first 11 years at Eastern Illinois University (EIU), where I began in August 1985, I did not miss a single day due to health problems. However, starting during 1995, I started feeling uncharacteristically fatigued and generally not up to par, but still was doing fine professionally and personally.
In December of 1995, I was part of a proposal-reviewing group in Washington, DC at the National Science Foundation. This particular program is famous for sponsoring grueling, low-sleep reviewing sessions, but I didn't feel bad enough to cancel. I quickly found that the session's reputation for intensity was well deserved, and when I returned, everyone who knows me said I was never the same - low energy, low stamina, etc.
Involving the medical community, I was diagnosed with chronic fatigue syndrome (CFS), a well-documented illness that seemed to fit me. Then, I June 1996, I had a focal motor seizure of my right thigh, and only the alertness of one of my colleagues, who called 911 immediately, saved my life. In the hospital in Champaign, I underwent three surgeries in nine days, where the first two were to thoroughly clean out the area of seizure.
Focal motor seizures are not common except to some CFS sufferers.1 All of the body's electrical energy goes into contracting the involved muscle cells, which begin to break and fragment under the intense contraction (the specific condition is called rhabdomyolysis2). These pieces of protein enter the blood system, where they're filtered by the kidneys; in serious cases the kidneys can become blinded with the material being filtered, and the patient can die of acute kidney failure. This is what I was looking at, although I didn't realize at the time how close to death I actually was.
Between the surgeries, I was on kidney dialysis every day for 4-8 hours, depending on how much organic sludge was being filtered off. The third surgery was to close the leg wound, which had become so swollen that simple suturing could not be used, so a skin graft, using my left thigh as the donor site, was performed.
Within a few days of the final surgery, my right foot started to hurt - a LOT!! - with a hot, burning, intensity centered in the joints to my toes - which made no sense at the time since it was far from the surgical site. This, I now know, was the initiation of complex regional pain syndrome (CRPS), at the time better known as reflex sympathetic dystrophy (RSD). RSD is often initiated by serious tissue damage (including, and especially due to, surgery) to a limb; the pain always manifests in the distal end of the affected limb.
However, my primary care doc decided that I was drug-seeking for the purpose of abusing them, and not really in the pain I was describing. Thus began my journey through over a half dozen docs before one decided to take me seriously. I wish my experience were a fluke, but it's now known that the average RSD patient must see seven physicians before they're diagnosed. All that time, of course, the clock is ticking on the narrow window of opportunity to cure the RSD by aggressive, fast treatment.
I won't describe the horrors of RSD here; the best source is the Reflex Sympathetic Dystrophy Syndrome Association (rsds.org). A few statistics will help put it in perspective. Numerous studies, using various methods, indicate that RSD is the most painful condition known. #2 is bone cancer - a full 10% behind RSD. Also, more RSD patients commit suicide than any other condition: #3 is depression (15%), #2 is cancer (17%), #1 is RSD (25%). 25%!!
One in four patients die, by their own hand, rather than face the tortures of RSD.
If not treated immediately and aggressively, RSD becomes chronic and typically lasts the rest of the patient's life. In January of 2007, I went on a long-term disability leave from EIU, and do not expect to return. Last June (2011) marked my 15th RSD anniversary.
In January 2010, an incredible sequence of events began. I started to feel more energetic, my constant pain levels lessened, and the other dozens of symptoms all began to recede. As spring and summer came and went, I continued to progress out of the horror of RSD toward something a little more normal.
In fact, it was during this time that I came to realize just how all-encompassing, horrible, and incapacitating RSD truly is, as I slowly regained the multitude of senses, faculties, etc. that RSD had stolen without my even being aware of it. I believe that, in the throes of RSD's hellish symptoms, a significant degree of denial sets in, to protect the patient from being totally overwhelmed by the enormity of their enemy.
Currently, my required medications have been reduced to 30% of what they'd been, pain is at 0-1 but sometimes will spike to a 4, 5, or even higher if I become too emotionally upset or too cold. However, my pain management physician, who's one of the best in the world and has been doing this for 30+ years, has said that my remission is totally unprecedented, especially after such a long period (nearly 15 years) of chronicity.
No one knows where my remission may lead, without any precedent. My goals are to be rid of the ongoing fatigue somehow and then try to d/c all medications. THAT would be SO SWEET!! But realistically - whatever that is - if I don't improve any more at all, I could live relatively comfortably with the current symptoms. Stay tuned.
|1The Epstein-Barr virus has been implicated as the causative pathogen in CFS. If it settles in the CNS, it manifests as CFS; location in the musculoskeletal system results in the symptoms known as fibromyalgia
2 Defined in a medical dictionary thus: "An acute, fulminant, potentially fatal disease that destroys skeletal muscle and is often accompanied by the excretion of myoglobin in the urine."
Copyright ©2011 - T. Howard Black