How Do I Know What’s Wrong, When I Always Have CFS?
The recent headaches started about two weeks before the stomach pain. My head seemed filled with cat litter. A woozy scratchy aching, either all over at once or in selected locations, on top, in back, in front. A bit of blurry vision.
One day the headache would be light, the next more severe. I felt a heaviness around my nose. Did I have sinus issues?
I tried Advil. No help. Alleve, but the headache persisted. Tylenol and then just aspirin, and still the pain refused to respond. Sudafed did nothing. In the drugstore, I found the big guns: MUCINEX SINUS MAX — no help.
Fifteen years ago with the onset of ME/CFS, I suffered with awful headaches that lasted months, maybe even years, as part of the spectrum of symptoms that led to the diagnosis. Back then, too, nothing helped – not medication (OTC products as well as Neurontin), not acupuncture or acupressure, not copper bracelets, not headbands, not aromatherapy or massage (honestly, I tried them all) and my depression and anxiety increased as I came to believe that headache was my default condition. In that early time, some generalized nausea accompanied the head pain.
Before ME/CFS, I’d rarely had headaches, except for one siege when I was a teenager and ran home from high school every lunch time for a week with head pain so severe I could barely see. My parents took me to a doctor who drained my sinuses with a procedure that felt like he was sucking my brains out through my nose. When that didn’t work, my mother decided I needed an enema. Guess what. No more headaches. Really. Never, until forty years later and ME/CFS.
After about ten more-or-less headache free years (I cannot remember when or why the pain stopped; probably just time reduced the severity of all my symptoms as I settled into patterns of generalized malaise accompanied by painful crashes after too much exertion), am I returning to Square One?
Two weeks after the headache onset, as I ate lunch on my porch on a beautiful Saturday, the nausea arrived. Not the run-to-puke kind, but an extreme queasiness, something like what I’d endured during the first three months of pregnancy. Suddenly my favorite combination of yogurt, blueberries, walnuts and flaxseed turned loathsome, and for the rest of the day I felt so lousy that I crawled into bed. For dinner I had tea and toast.
I woke up around 2 AM with intermittent stomach cramping in my lower abdomen for the rest of the night. Ouch and ouch and ouch until I pulled myself out of bed in the morning. Sunday brought a return of the queasy feeling but no more pain. I just didn’t feel well enough for our 51st anniversary dinner, so we canceled our reservation. (Canceling plans — routine for ME/CFS people.)
Did I have a stomach virus? Was there a connection between the stomach and head pain? Here we go again, I thought. Living with ME/CFS brings a continual struggle to FIGURE THINGS OUT. To monitor body sensations, governed usually by the ebb and flow of ME, which become familiar enough to understand and weather, except when they become unfamiliar and then uncertainty and, with me, apparently, anxiety make their grand entrances.
Are the worst moments of my disease returning? If so, why? Have I started any new supplements? Yes. Strontium Citrate for my osteoporosis. Could headache and/or stomach pain be a side effect? Is my ME/CFS worsening with increasing age? Am I suffering a return of Candida? Could I have Celiac Disease, even though earlier tests ruled that out? My husband was just diagnosed with Lyme Disease caused by a tick bite on one of his weekly hikes. Did the culprit tick jump off his back one night while we slept and crawl over to attack me? (Yes, sounds absurd. . .but. . .whoever knows??)
Sunday night I fell asleep around 10:30. At 12:30 AM, the stomach pain returned, this time above my navel. Strong spasms with accompanying nausea about every 15 seconds. I found a heating pad which provided some relief, and I fell back to sleep, but I awoke again at 2 AM with pain and nausea that kept intensifying until I was convinced I couldn’t make it through the night. After an hour of wicked pain and indecision, I poked my husband.
“Steve? Steve? I think we have to go to the emergency ward.” God, I was such a coward. As soon as he woke up, I wished I had waited until morning. He insisted on the ER (“I’m up now. . .”) and when the next contraction left me cringing, I slipped into my jeans and we left to drive through the dark and empty streets. I just wanted a few pills to stop the pain.
The triage nurse at Robert Wood Johnson Hospital took me immediately to an emergency room bed, where nurses and doctors questioned and examined me, then went off duty, and so other doctors and nurses questioned and examined me. All asked if I had any other medical conditions, and when I said, “Chronic Fatigue Syndrome” (convinced they had never heard of Myalgic Encephalomyelitis), all gave me the same blank stares. . .and never asked me one question about it.
All the while, poor Steve sat in a little chair by my bed, his head falling onto his chest as he kept lapsing into sleep.
Gradually the stomach pains diminished, but ER protocol required I have a CAT scan, an EKG and blood work. The scan and blood tests revealed no abnormalities, but the ER doctor saw something in my EKG and wanted to admit me overnight for observation. “In women,” he said, “very often stomach pain indicates cardiac problems.” He looked at Steve. “If she were my wife, I wouldn’t let her go home.”
“You should stay,” Steve said. I guess I would have reacted similarly if he were the one lying in the hospital bed.
Shit. I just wanted a few pills. What have I gotten into?!
Steve left to get some sleep, and to bring me stuff from home later.
I tried to pass the hours until my transfer to a room (was this really going to happen?) by reading my book in spite of the continuing headache. There’s no way I could rest with all the noisy flutter of the ER. . .not to mention the groans and sporadic screams. And the loud drunken snores of the patient next to me. But I couldn’t focus on the words because of those invading fears of more severe ME/CFS symptoms.
Of course, I’d read about the awful gut issues of so many ME/CFS patients, which I’d thankfully avoided all these years. Was I now developing the IBS I’d read was linked to ME/CFS? I really didn’t believe I was having a heart attack. In fact, a part of me would rather face that than an increase in ME/CFS symptoms.
Suddenly, like ministering angels, three women in white coats appeared at my side. One looked familiar. “Oh, I’ve seen you in Dr. Hamm’s office, haven’t I?” I asked. Dr. Hamm is my internist, whose family medicine practice is associated with Robert Wood Johnson Hospital.
“That’s right,” she said. “I’m a nurse practitioner and this is Dr. Lin. We’re associates of Dr. Hamm. We’re making rounds and were notified that you’re here. Do you mind if we examine you?” The ANP explained that the third woman was an Austrian doctor there to follow the other two around to better understand American medicine. Okay. Whatever. So there were three sets of eyes.
The doctor and the ANP took over, examining me, my medical records (available through the RWJ computerized systems) and the recent test results. The third doctor watched.
About a half hour later, they filed back beside my bed. “You can go home,” said Dr. Lin. “We don’t see anything unusual on your EKG.”
“We compared it to older ones, and it seems fine. The CAT scan showed excessive stool in your intestines, and that might be causing your pain. Have you been constipated?”
“Well, yes, but . . .” Constipation? I’d just submitted to the massive radiation of a CAT scan because of constipation?
Dr. Lin, an expert in Chinese medicine, provided instruction on acupressure for sinus and constipation problems. She also recommended a stool softener and laxative. I thought of my mother and her enema bag. Good grief.
Well, okay. So Steve returned and drove me home after nine hours in the ER. Hooray! No overnight stay. No heart issues. Thank you, doctors. Thank you too, Austrian stalker.
For a week until my actual appointment with Dr. Hamm, I tried the acupressure points for my headache, which responded by getting worse. I took the Colace and Miralax and my cramps and nausea persisted but in a milder form. And various explanations continued to ricochet in my brain. After 15 years, you’d think I’d be better able to ‘let it be.’
I am lucky that Dr. Hamm is empathetic and willing to help. Though not an ME/CFS expert, she listens carefully, asks good questions, and knows my history. “I’m convinced you had a virus that started with the headaches,” she explained. “Your immune system is so weak and overstressed that you couldn’t fight it, and it traveled to your stomach, probably causing the constipation and pain.” She told me to increase the Miralax to twice a day and try a Fleet enema. I left with a prescription for an antibiotic just in case I actually had a sinus infection and didn’t feel better in a week.
Well, the intestinal spasms are gone, but I’m left with constant bloating, some intermittent nausea, and vague cramps. What’s strange is that I still have my appetite, though I feel full very quickly. The headaches sort of come and go, but the intensity has dissipated. I’ve rejected the antibiotic, but have added zinc and L-Glutamine, recommended by Dr. Hamm. And I’ve returned to my normal abnormal modified life, which includes napping each day after lunch, seriously pacing my activities, drinking oceans of water and weathering unpredictable crashes.
Not a real resolution, but I’m not ready to enter another maze of more doctor hunting and testing, so for a while, I will let it be.
I do vow, however, to avoid the ER.