Chronic Fatigue Syndrome

It’s profoundly disabling. The suffering is unimaginable. And it has such a wimpy name you’d never know it.

Imagine an illness that involves more suffering and disablement than a cancer patient undergoing chemo. Now imagine that instead of receiving appropriate medical support, you’re told there’s nothing wrong with you. It’s “all in your head”. You spend years trying everything to get your life back, with little to no improvement or answers to show for it. This is the reality of a medical condition inaptly labeled “Chronic Fatigue Syndrome”.

The gist of it:

CFS causes both neurological and immune system dysfunction, as well as its hallmark symptom: profound, disabling fatigue unrelieved by rest.

plus a lot of additional symptoms including chronic pain, orthostatic intolerance, sleep dysfunction, gastrointestinal problems, overload phenomena, motor and perceptual issues, and loss of thermostatic stability (body regulating its own temperature). See this PDF for a more complete overview.

What is it? They don’t know. Treatment options? None, though resting and reducing stress are crucial to halting its progression. Supportive care and addressing secondary issues can bring limited relief. Prognosis? If you don’t recover within the first 5 years you’ll probably be affected for life.

Oh and it might be transmissible too. Read more on… a page I plan to put up soon.

To make things more confusing, there are multiple names for CFS including “Chronic Fatigue Immune Dysfunction Syndrome” (CFIDS) and “Myalgic Encephalomyelitis” (ME). CFS has been re-defined over the years, at times to include practically anyone experiencing long term fatigue of unknown cause. And unfortunately ME is not well known in the US. See this summary of CFS/ME labels for more info.

Note: Never abbreviate CFS to “chronic fatigue” – it’s both inaccurate and trivializing. “Chronic fatigue” is a symptom common to a plethora of medical conditions. “Chronic Fatigue SYNDROME”, on the other hand, is a distinctive collection of many symptoms that present in a specific manner. CFS is a complex medical condition, not just feeling tired all the time.

CFS Onset

At age 13 in 2001 I traveled alone to LA for an exciting opportunity to join a 6 week singing tour. Just before the trip I’d contracted severe bronchitis, but the doc had given me a bunch of meds and I wasn’t one to let illness stop me. The tour began with 10 days of boot camp training for the highly choreographed performance. We had very little sleep. In that high stress, high energy environment I was in the ER 3 times for breathing issues and misdiagnosed with asthma before last one sent me home. “You’ll kill yourself if you continue“, he said.

My health never recovered.

Previously a gymnast with enough raw talent to shoot for the Olympics, now I could barely complete routine before collapsing at competitions. My coach was convinced I’d come down with mono. Inevitably I was forced to drop out.

For the next three years I struggled with a barrage of symptoms – breathing issues, insomnia, gastrointestinal problems, pain, chemical sensitivity, and lots of just being too exhausted to do anything. I would constantly walk into door posts when passing through doorways. Difficulty concentrating made school exponentially challenging to the point where I couldn’t keep up. Since I was homeschooled, this caused both family friction and isolation from my social life.

My parents took me to various doctors and specialists, all of whom were unable to find anything wrong. “She’s probably just depressed.” “Maybe she wants more attention.” “She’ll grow out of it.” I continued to prove otherwise. One doctor told me to keep my medicated inhaler on hand “just in case”, while privately informing my mom that it was just a psychological comfort measure. “But it doesn’t DO anything!” I’d protest when prompted to take it for breathing trouble.

At age 16 I experienced a remission over the summer. Whatever it was, seemed to be gone! I went from mostly housebound to running a mile with ease. My meals were staying down. My sleep was vastly improved. I could laugh without coughing. Convinced I was healthy at long last, I enlisted a tutor to get me caught up in school and enrolled in college courses that fall, excited to finally put behind me whatever the heck THAT was.

The Disablement

Classes began and I threw myself into my studies, having a blast and excelling in grades. Then I got sick, again. It was a double ear infection on top of the flu. I reacted severely to the first two antibiotics attempted. Determined to keep on, I dropped one class and managed to complete the other with a 4.0 despite missing the last two weeks entirely.

Though I attempted to rest over winter break, by the time I returned in spring I had additional symptoms to juggle. I needed to wear sound cancelling muffs on top of ear plugs because noises was so painful for me, and dark sunglasses due to light sensitivity, even indoors. Soon I was no longer safe to drive due to the exhaustion and confusion (“brain fog”) I was experiencing. When my POTS began and I couldn’t remain upright for long, I had a friend carry me around campus and lay on the classroom floor for lectures.

My perseverance only made me sicker.

I woke up one morning unable to get out of bed with what felt like a really bad flu. I assumed it would pass and then I’d be back to slugging away at my studies. But the days turned to weeks, and then months. I was forced to drop school entirely, unable to return even one last time to have the papers signed.

Years later a harsh ER nurse would inquire about about my schooling and then snap, “What, so you just quit when it gets hard?”

I was too shocked to muster any response beyond tears.

The Suffering

As heartbreaking as the disablement was, the sheer degree of suffering was by far the most traumatic aspect of it.

Isolation – My short-term memory and concentration issues made having a conversation nearly impossible. The stimulation of another person in the room was often unbearable. It would send my senses into overload and I would immediately beg and yell at them to get out. Distance communication worked best. I went years without a hug. People came and went from my life in a confusing blur of names; sometimes I remembered them, sometimes not. Most found it difficult to relate to me and faded away.

Fatigue – I called it “fatigue so severe it should be classified as a type of pain.” On a scale of 1-10 it was off the charts. Some years all I could do was get to the bathroom, often crawling on hands and knees, plus taking breaks to rest. I would have hours at a time where the act of inhaling felt so exhausting and difficult I would lay there coaching myself into taking another breath. Sometimes the weakness was literally paralyzing.

Pain – The pain was widespread, intense, and unrelenting. The first year I woke each morning genuinely shocked that the human body could endure so much suffering in so many places and ways and yet not die. There were so many different kinds, in so many areas, it was impossible to track any rhyme or reason to it. Later on I developed extensive coping mechanisms, perpetually hopping from one distraction to the next to keep the pain bearable.

Insomnia – I would call them “sleepless marathons” when my body would go 24 hours or more without getting the least bit sleepy. I think my record was 56 hours straight without any dozing whatsoever, not for lack of trying.

Sensory Overload – The noise and light sensitivity were bad enough to deeply traumatize me into a screaming mess and put me in shock. For 8 years I lived in an environment without daylight; all windows had to be thoroughly blocked out. Regarding sound, any one of a variety of noises instantly sent me into sensory overload. To this day, even in my improved state, some sounds still cause me so much pain I collapse.

There were many more, but it is too traumatic to recall.

Turning Point

A moment of clarity was reached when I saw an M.D. double-board certified in gastroenterology and internal medicine. After spending a lot of time with my mom and I inquiring about symptoms, he said that I was the sickest patient by far he’d ever had in over 30 years of practice. Moreover, he said “You’re too sick for primary care. Your case is too complex. You need to travel cross country to the Mayo clinic where a team of specialists, all top in their field, can collaborate on your case.”

“Even there,” he continued, “You’re unlikely to find the answers to what’s going on. But that’s your best chance.”

I was too ill to travel and I was tired of fighting. It was a turning point for me. I decided I was finished seeking answers and treatment. Now I just wanted palliative care — symptomatic relief — something that had often fallen to the wayside over the years as the priorities jumped from crisis to crisis to save my life.

It was in this stage of coming to terms with losing my battle and focusing solely on making things easier for myself that I unexpectedly stumbled upon at treatment that worked.

Improvement

The first thing I noticed was fleeting windows of opportunity where I could experience restorative rest. It was an incredible breakthrough for me. The sensation most people routinely experience whenever they they lay down, I hadn’t felt it in over 8 years.

Words truly cannot describe the relief.

I then proceeded to turn my life upside down in pursuit of it.

(To be expounded upon…)

Current Status:

I’m back to having the muscle strength of a normal person, but not the endurance. Walking is doable, but not far without serious consequences. I can open a stubborn jar of pickles one day, so long as I don’t have to do anything similar the next day or two.

I still experience “Post Exertional Neurological Exhaustion” if I overdo it physically, mentally, or emotionally — sometimes so bad it’s akin to paralysis. But provided I can relax and am safe from sensory stimuli I now experience restorative rest. I also tend to bounce back from these episodes within a couple days, whereas it used to take weeks or months to recover back to baseline.

I rarely walk without some form of support, usually hiking sticks or someone’s arm, occasionally just tracing my fingers against a wall or table as I walk beside it. Without such measures I end up tipping over or walking into things unless I focus so hard on not doing so it’s exhausting.  I typically just explain it to people as balance issues. On some good days and/or in specific familiar environments I don’t need these measures.

I’m  also still oversensitized to stress in general. It quickly makes me so physically ill that I’m going to the ER in severe gastrointestinal distress. Sensory overload is still a thing, too, just not as extreme as previously.

My physical suffering has drastically improved, though I still experience lots of weird unexplained medical issues and hours of severe pain at times.

Will I improve further? My doctors and I believe the potential is there. However, I probably need a less stressful, more stable lifestyle before I can really expect to see more progress.

CFS/ME Resources:

  • Canadian criteria for CFS – as defined for medical professionals. My favorite explanation and definition of the condition.
  • CFS overview by Medscape – resource for health professionals. Note the U.S. definition of Chronic Fatigue Syndrome is less severe than the Canadian one. I was diagnosed by the Canadian criteria.
  • Myalgic Encephalomyelitis: International Consensus Criteria – starts with Canadian CFS criteria as a base
  • What exactly is Myalgic Encephalomyelitis? – Begins with a great summery of CFS/ME labels over the years. At PubMed here.
  • The Misdiagnosis of CFS – a comprehensive paper on the conflicting criteria issues regarding the CFS label and advocating for the ME label
  • Osler’s Web – book by investigative journalist Hillary Johnson detailing the cluster outbreaks of the 1980’s into the 90’s and various health officials’ failure to act as a brave few doctors and scientists tried to figure it out.
  • Phoenix Rising – a nonprofit organization with a large online forum dedicated to advocacy and helping the CFS/ME patient community.

Last updated 11/15/2016