Chronic Fatigue Syndrome (CFS) is a loaded term, made up of waffle words that don’t adequately describe the enormity of the illness. For this ME/CFS Awareness Day, I thought I’d take a look at the international consensus criteria for Myalgic Encephalomyelitis, as CFS is called in other countries. Aside from sounding far more serious, I believe it paints a more accurate picture of many of my challenges than the CDC criteria for CFS.
So let’s take a little look at how I personally fit these international criteria for ME:
Compulsory feature: Postexertional neuroimmune exhaustion
Commonly referred to as post-exertional malaise or PEM. This includes marked, rapid physical and/or cognitive fatigability in response to exertion; postexertional symptom exacerbation; postexertional exhaustion that may be immediate or delayed – mine can be delayed for days before it hits me, especially around the holidays; recovery period is prolonged, taking days or even longer than a week to feel “normal” for me; and low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level. It turns out that this last part would have defined me as a mild case (an approximate 50% reduction in pre-illness activity level) until last year or the year before. That’s when I moved into moderate territory, becoming mostly housebound and needing to make preparations for any venture outside the house more strenuous than sitting in a restaurant having lunch for an hour or so. (That is also tiring, but I can counteract that with my daily bath routine each evening.) Grocery shopping each Saturday wipes me out, and I have to proactively schedule rest periods afterward so I can continue to function in the following days.
Neurological impairments: Need one from three of the four subcategories
I’ve got the neurocognitive impairments down pat. (There’s one.) This includes my occasional confusion, cognitive overload, difficulty making decisions, impaired concentration (squirrel!), and some short-term memory loss. For this, they include difficulty remembering what you wanted to say, what you were saying, retrieving words, recalling information, and poor working memory. I can check off all of the above at various times. Poor Tom when I’m trying to tell one of my (long-winded) stories and then I get stuck on a word or otherwise lose my train of thought.
Then we move onto pain. (Oh yeah, there’s two.) I’ve been blogging extensively about my journey into the world of chronic pain that started last year. It had never been one of my primary symptoms before, but it is my life now. I do occasionally get headaches, but my pain is more of the second type they describe:
Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen, or chest. It is noninflammatory in nature and often migrates.
So much this. It started with the muscle pain, primarily in my legs last year. It spread to my joints, which my new rheumatologist pegged as polyarthritis (just meaning arthritis in 5 or more locations) but was unable to determine a specific type or cause. I have occasional bouts of costochondritis – chest pain – that can come on for absolutely no apparent reason and only goes away if I take ibuprofen. And abdominal pain – that’s what’s brought me to the ER twice this year. My primary doc is trying to help me get to the root of that now, and the hyoscamine she gave me seems to help, which suggests IBS. And, of course, irritable bowel syndrome tends to run comorbid with ME/CFS.
And then there’s the hallmark of sleep disturbance. (There’s the three I need.) For me, it’s the insomnia and the unrefreshing sleep that gets me. I take enough medication at bedtime that would knock a man twice my size out for eight hours or more within minutes. For example, Tom only needs to take one Tylenol PM or one Benadryl to guarantee a good night’s sleep. I can take my 200 mg of trazodone – the only thing that regulates the quality of my sleep so I can awake refreshed – along with 0.5 mg of Ativan to stop my brain from ruminating, one Tylenol PM to aid in falling asleep, and one Benadryl to control some itching and other allergy symptoms…and still take over an hour to fall asleep. I can add one Ambien to the equation to pretty much guarantee I sleep well, but there has been at least one occasion when I ended up lying awake in bed for three hours after taking all these pills because my mind was still racing with anxious/depressive thoughts. I’m guessing only horse tranquilizers would be a sure thing, but I wouldn’t enjoy the hungover feeling the next day. That’s always been the difficult balance – taking enough of the right combination of meds to allow me to get to sleep and feel rested while still being able to wake up and feel functional the next morning. One of the reasons Xanax didn’t work out for me was the horrible hangover feeling I got whenever I needed to take it.
Oh, and let’s not forget neurosensory, perceptual, and motor disturbances. (There’s four for four. I’m such an overachiever!) Although I generally attribute my sensitivities to light, sound, taste, touch, and smell to Asperger’s Syndrome, these things are also apparently associated with ME/CFS. I also experience the muscle weakness and poor coordination that falls under this heading.
Immune, Gastrointestinal, and Genitourinary Impairments: Need three out of five categories
I’ll just toss these suckers out in a list, my three out of five: Sensitivities to food, medications, odors, or chemicals; susceptibility to viral infections with prolonged recovery periods, and problems with my gastrointestinal tract. Certain chemicals and odors definitely affect me; I can’t get my hair professionally colored because the ammonia is intolerable, so I buy the ammonia-free boxed color and have Tom help me with it at home. I can smell cigarette smoke from across a parking lot, too, and it makes me cough violently. And when I get sick with a cold or other viral illness, it takes me weeks to recover. GI tract? It looks like I’ve got IBS, and prior to this search for answers, I’ve already had an endoscopy and two colonoscopies. I’m only 35. I’ve got this part covered.
Energy production/transportation impairments: At least one symptom
While I do experience occasional dizziness or lightheadedness, my more pronounced symptom in this category is intolerance of extremes of temperature and loss of thermostatic stability. On purely a comfort level, I do best at 70-72 degrees. I can be “freezing” when the house temperature is 68, and I can be awake all night sweating if the thermostat gets to 73. My base body temperature runs low, so 98.6 is actually a low-grade fever for me. The cold temperatures of winter exacerbate my joint and muscle pain, and even keeping an electric blanket on my lap isn’t necessarily enough to prevent that. The hot temperatures of summer can often bring me to heat exhaustion within minutes of being outdoors. I experience far more respiratory and cardiovascular symptoms in the summertime, my pulse becoming rapid, my breathing becoming labored, and orthostatic intolerance forcing me to sit down even if there are no seats available – even when I know that getting back up again will be difficult and require assistance.
That’s ME in a Nutshell
So yeah, there’s a lot going on to get a myalgic encephalomyelitis diagnosis. I hope that this helps people to understand that folks like me who suffer from ME/CFS aren’t just “tired all the time,” or maybe some folks who are Googling their symptoms might read this and find a starting point for talking to their doctors.
Despite my “mostly housebound” status, I’m actually doing much better than I was a year ago, thanks to the treatment plan I’ve crowdsourced from some very helpful communities online and input from my growing team of medical professionals. My nutritional supplement regimen has helped me attain more stable periods of energy and mental clarity; even just having a few “good hours” a day is better than only muddling through the brain fog day in and day out. And although I now have more prescription medications to manage my pain symptoms, I’ve found that the home remedy solution of soaking in a hot Epsom salt bath for an hour or so each day reduces pain and swelling in my extremities and in my trunk, so I can diffuse my accumulated pain each day and not just have it all pile on without any relief. These baths are a huge lifestyle change – I need to allot two hours each evening to soak and then recover from the heat of the bath, which is time away from both work and family. But on the few occasions where I had to skip my bath for a day, I suffered greatly for it. In my quality of life assessment, the inconvenience (and the increased water bill) becomes trivial.
Developing ME/CFS is not something I’d wish on anyone, but it is possible to find your own “life hacks” that make it more bearable. What helps even more is having understanding from friends and family, especially when we have to turn down invitations. Thank you for your understanding.