Professor T. Howard Black, Ph.D.
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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. During much of 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 an invited proposal-reviewing group at the National Science Foundation in Washington, DC. 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, caught every little cold going around, etc.
Then, the next month (January 1996), I crashed, energetically and completely. Never had I felt so totally depleted of energy, to the point that I'd lie in bed and have to summon the energy for 15 minutes just to go to the bathroom . Walking was like trying to walk through Vaseline.
After consulting my primary care physician, a neurologist, a rheumatologist, and a few other specialists, 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 back in Champaign, I underwent three surgeries in nine days, where the first two were to thoroughly debride and 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). This can happen inside a closed compartment in the body, such as the sheath of tissue surrounding muscles, comprised of very tough, inflexible connective tissue called the fascia. When this occurs the fluids that accumulate after a trauma have no way to escape, and there is a great buildup of pressure within the compartment.
This pressure can then impede the flow of blood in the area and interfere with nerve conduction; this life-threatening condition is called Compartment Syndrome. The resulting pieces of dead protein tissue enter the blood system, where they are removed via filtration by the kidneys; in serious cases the kidneys can become blinded with the filtered material, 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. Also, in all cases, since another surgery would be coming up within a few days, the wound was not sutured. Instead, it was wrapped in sterile towels.
This sounds OK, except that the wound dressing wasn't bandaged or otherwise held onto my leg, and it was common to look down and see one or two large quadriceps muscles, having slipped from their usual home and now lying on the towel. Also, at the start, evidently the smell in my hospital room was pretty nasty, which necrotic tissue has a way of doing. I couldn't smell it, and only my partner was comfortable enough to tell me about it, but I guess it was nasty. Had I not been in semi-shock, I'm sure it would have been horrible to deal with.
The RSD Begins
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 just drug-seeking, lying there in a hospital room, and not really in the pain I was describing. After firing him when I left the hospital, I 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 around 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 fast, aggressive treatment.
It is not my purpose here to describe RSD; the best sources are the Reflex Sympathetic Dystrophy Syndrome Association (rsds.org) and the site you're now visiting (I say this in all humility, but traffic reports and Google rankings don't lie). 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 dies, by their own hand, rather than face the tortures of RSD.
If not treated immediately and aggressively, RSD usually becomes chronic and can last for many years. In January of 2007, I went on long-term disability leave from EIU, and never returned. In January 2013, I transferred from disability income to the usual retirement annuity, which is good. Next June (2015) marks my 19th RSD anniversary. Not one I intend to celebrate.
The Remission Begins
In early 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. I believe that, in the throes of RSD's hellish symptoms, a significant degree of denial sets in, to protect us from being totally overwhelmed by the enormity of our resident enemy.
For two years, my required medications were reduced to 30% of what they'd been, pain was still constant but often low enough that I was unaware of it, and my senses, all dulled by RSD, all returned. I still struggled with fatigue. However, my pain management physician, who's one of the best in the world and has been doing this for 30+ years, said that my remission is totally unprecedented, especially after such a long period of chronicity.
[Oct. 2011] I can now do much of what I could pre-RSD, although I have occasional major fatigue crashes. Often, my pain level is a true 0/10. But no one knows where my remission may lead, without any precedent, or whether relapse back to full RSD is possible and what should be done to try to avoid it. My goals are to deal with this fatigue somehow and then try to d/c all medications. That would be so wonderful!
[Jan. 2012] The fatigue has finally started to lift, such that I don't fear waking up in the morning so heavy with fatigue that it feels like need to sleep more. Actually, I can now distinguish between fatigue and sleepiness, which I couldn't do at all when I was really sick. I'm finding that a certain RSD symptom can come back, but now I can look at these as brief reminders of what it used to be like. [Note: This blissful respite from fatigue lasted perhaps a month.]
Currently, I'm battling the appearance of the Staph-caused skin sores that are familiar to most of us. They're scary because MRSA (methicillin-resistant Staphlococcus aureus)3 is in the same family as the Staph. bacteria that cause most sores. But overall I'd say that about 95% of the way back to normalcy - whatever that is.
I also "graduated" from my pain management physician in January - what a strange feeling, after 10+ years with this one incredible physician. It was surprisingly bittersweet. I'm now free of the nasty Staph. infections and all other physical RSD signs. My feet even look the same!
[Mar. 2013] My last (hopefully) battle is with sleeping regularly, which I'm not close to yet. But my acupuncturist is on it, and I get a little better every week. I still go to bed having no clue what the night might bring. I might sleep 15 hrs; I might sleep 0 hrs. This roller coaster is a drag, and until my sleep pattern is something close to normal, I won't consider my remission complete.
Btw, in early April, I started keeping a log of the number of hours I sleep and what my feelings of fatigue and/or depression are during the following day. It's still very young, but already is showing correlations I'd never have guessed.
[August 2013] The fatigue is definitely lessening, although the associated depression and anxiety are still rough going. Still can't exercise over a gentle walk, which is frustrating. I know I'm making progress, but it's damned slow.
But please, don't get the idea that I'm not extraordinarily grateful, every day, for the miracle that delivered me from the horrors of RSD. Erratic sleep is trivial compared to the daily tortures of full-blown CRPS. I definitely remember that.
[June 2014] The fatigue is, at last, a thing of the past. A major contributor was found to be very low testosterone, a common side-effect in men of taking narcotics for an extended period. My sleeping patterns aren't normal yet, and I still lose an entire night's sleep about once/week. But I'm back to playing with other musicians, and have the energy to finally do things I've had on hold for 18+ years.
I still have problems with ongoing sores on my legs, including the non-RSD one, which easily become infected with Staph. aureus, so I use mupirocin ointment to deal with them. It's a good choice, since mupirocin also kills the MRSA pathogen, and I've had enough experience with MRSA to last the rest of my life.
1 The Epstein-Barr virus has been implicated in CFS. If it settles in the CNS (central nervous system), 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."
3 If this term isn't familiar, MRSA is the illness that most people acquire from being in a hospital. It is a virulent mutation of the Staph. aureus bacteria we all have growing on our skin, and can become systemically septic in a very short time. Systemic sepsis is a life-threatening whole-body inflammatory response with a mortality rate of 40% in adults.