One reason for the perception that CFS=depression is the amount of time CFS patients spend in bed.
My first specialist explained it quite succinctly, that I might be spending 20 hours in bed with my eyes closed, but if I was never getting into the Stage 4 deep healing sleep, I was getting less out of those 20 hours than someone who spent 8 hours sleeping well. Numerous sleep studies have shown that CFS patients get little or no Stage 4 sleep, and many exist in a sort of twilight world, not quite asleep but not quite awake, either. It’s not "sleeping for escapism", but trying to get the same amount of rest and recuperation provided by 8 hours of good sleep. His recommendation (seconded by other CFS specialists) is that the first step in treatment must be fixing the sleep problem; if you don’t do that, then everything will continue getting worse because of lack of quality sleep.
In this relapse, I’ve had the added problem of pain from arthritis, bursitis, tendinitis and just plain overuse. Because no sleep study was ever ordered, my doctors didn’t have to deal with the objective proof that my spending 20 hours a day in bed might only produce 3 hours of actual sleep (and poor quality at that). They wanted to hear that I was depressed over the divorce, so there was, in their minds, no need for a sleep study. In fact, the sleep study would have proven that I was not, as they chose to understand, "sleeping" 15-20 hours a day, but spending 15-20 hours "in bed" simply trying to get enough sleep to not die from extreme sleep deprivation. There’s a big difference between "going to bed" and "going to sleep", as any mother of a toddler on his sixth potty trip can tell you.
Had a sleep study been done, the treatment might have been different. Instead of, as one doctor stated he understood, that the problem was "sleeping too much", they would have had to confront head-on my statements that both quality and quantity of sleep were affected by the pain that started the vicious cycle of insomnia (fibro-like symptoms can be induced in healthy volunteers just by depriving them of sleep, and that pain goes away when they are allowed to return to a normal sleep schedule). A sleep study would have verified the truth of my statement that every time I rolled over onto my painful left shoulder, I woke up, and remained awake. A left shoulder that was so affected by bursitis that I couldn’t raise my arm even all the way to shoulder level; but because the doctor was attributing all my problems to psychological reasons, it was almost two years after the shoulder problem started before anyone checked the range of motion in that shoulder, and saw I could not raise the arm over my head. I knew it was a problem – for weeks, I had been unable to access the top file drawer at work because I couldn’t get my left arm up high enough to assist my right in lifting the heavy older files stored there – but no one was listening to my full recitation of objective problems, because they had the erroneous depression diagnosis to explain away the pain. (In fact, CFS patients describe a much different type of pain than people with depression. When I was diagnosed, I complained that "even my hair hurts" ... a sure sign of neurological involvement!)
There was, in their minds, no reason to do a physical exam because if I had depression, there would be nothing to find on a physical exam. One doctor never asked me to undress at all; he saw no need to perform any sort of physical exam on a CFS patient, not even to check for the telltale swollen glands. In fact, if they’d done a physical exam, or taken a thorough injury history, they would have found legitimate reasons for my pain: post-traumatic arthritis from old sports injuries and three fractured vertebrae. But because I have CFS, there was "no need" for any further investigation of any symptom, they assumed it was all caused by the CFS, and therefore, there was "no need" for the pain medication that would be given to someone who had arthritis without CFS.
Add in the fibromyalgia, which is easiest explained as "The Princess and the Pea". When my fibro is in flare, a small wrinkle in my nightgown can feel like an iron rod under my hip. I spend a lot of time getting out of bed and smoothing wrinkles out of the mattress pad, the sheet, the sleepwear, and the next time I shift position trying to get comfortable, I have to do it again. Fibromyalgia has been demonstrated to be caused by abnormal levels of the pain-processing chemical Substance P; it’s not baseless hypochondria, but has a legitimate biochemical origin.
Informed specialists believe that the first step in treating CFS is to address the sleep problem. This does not mean that CFS=insomnia, but that if sleeping pills and pain pills can help the patient achieve Stage 4 sleep, the body can begin to heal itself. Once I had been sleeping well for a few months, my immune system re-activated and finally began attacking the virus; I ran a 101 fever non-stop for six months. Three years after first requesting a sleeping pill, I finally had the proof that what I asked for was the correct treatment for what truly ailed me. But that was three years of physical damage from the virus that didn’t need to occur, while I was being treated for "depression" which I didn’t have.
When you sleep better, everything else works better. That is such a basic tenet of medicine that it’s inexcusable for doctors to ignore patients’ requests for something to help them get adequate sleep. As one of the later specialists inquired "what would it have hurt?" for them to humor me with a trial run of sleeping pills. It would have hurt the doctor’s ego to have his diagnosis proven wrong, but it would have prevented further hurt to my body. His arrogance led him to act in ways that were detrimental to the patient’s health, and I will pay the price for his ego-centric approach to medicine every day for the rest of my life.
It’s simply counter-productive for a doctor to tell the patient what she "should" be feeling instead of listening to what she actually reports, and to insist that she must be confused if she thinks a prescription made her worse instead of better. Dr. Groopman’s book makes it clear that if the treatment doesn’t work, the problem is the diagnosis and other possibilities should be considered. Those other possibilities should not include verbally abusing the patient for "refusing" to get well; if the patient did not want to get well, she would not be spending money on doctors and prescriptions!
Anti-depressants work wonders on depression. They do absolutely nothing for post-viral CFS. Had my doctors known that, they would have recognized that the reason I kept saying the anti-depressants didn’t help was because they’re not supposed to help what I was previously diagnosed with, and therefore, I clearly did not have "post-divorce depression" as assumed.
One of my teachers used to say "a little learning is a dangerous thing". And it’s true. Knowing "a little" about CFS can be very dangerous if all you know is that it has something to do with fatigue, and depression also causes fatigue, so you’re going to treat it like depression. Doctors who know it has neurological components will understand why the patient complains of pain without obvious injury – neurological damage cannot be seen with the naked eye, and why the patient complains of cognitive/memory problems – brain lesions cannot be seen with the naked eye, and that these things cannot be fixed by treating the patient for depression, nor by jollying the patient "you can do it if you try harder". No polio patient has ever been made to walk by mere cajoling, and no true CFS patient will ever be cured by being coaxed to "do more". (A true CFS patient will relapse if she exceeds her known limits in following doctor’s orders to "do more and you’ll feel better".)
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