This is the final entry in my ME/CFS “origin story.” Here are Part I, Part II, and Part III.
We arrived back in California on Thursday night. I had already planned to take Friday off to recuperate from the trip. Saturday, May 29th, I was feeling a bit tired, so I hung out on the couch with a book. It was Memorial Day weekend.
When the evening rolled around, I rummaged around in the kitchen, trying to find something to make for dinner. Since we’d been traveling, there wasn’t much in the house – although a friend once said that for a foodie like me, “nothing in the house” was everybody else’s “I just came from the grocery store.” I located some carrots, and I had a bag of split peas, so I decided on split pea soup, which I always used to cook with chipotle chilies and butter to replicate the smoky, fatty flavor that smoked ham would impart.
When I started chopping the carrots, I looked at the clock on the microwave. 5:45. I quartered the carrots and was working my way down their length when I was overcome with a bizarre sensation: All the energy in my body was draining out of me, from my head to my feet and from there into the floor. I dropped the knife onto the wooden cutting board with a clatter and grabbed the edge of the counter, suddenly too weak to stand. The weakness was absolute; it felt like I’d been hit by a wall of water and was being sucked away from shore.
I must be having a panic attack, I thought. I’d had them before, and there was no reason I should be having one at that minute, but I knew they could come with some really strange sensations. I think I’ll go sit down for a minute, I thought. It’ll pass. They always do.
I stumbled to the couch and called Chimp. He went out to the kitchen and finished putting the soup together while I waited to feel normal again. But something wasn’t right. Panic attacks don’t usually come with such a profound feeling of weakness. Nor do they usually feature tingling in the extremities. My arms and legs were deluged with a pins-and-needles sensation. And as the minutes ticked by, the “panic attack” wasn’t passing at all.
Sunday morning, I felt no better, and was considerably more distressed by whatever was going on. We went to the emergency room. Chimp parked the car while I walked up to the building. “You look really sick,” a man remarked to me as I struggled up the sidewalk to the door. I felt really sick.
In the ER, a doctor took my history. Because I was taking spironolactone, an anti-androgen drug (for acne) that is also a potassium-sparing diuretic, they checked me for hyperkalemia (excess potassium). My potassium level was fine, and the visit provided no real insight. The doctor who saw me thought I’d gotten a virus; he told me I’d feel better in a week or so. On my discharge slip, he wrote Consult your doctor if symptoms continue.
They did. The first week of June, I was unable to go to work. I had a constant fever. The tingling sensation remained in my hands and progressed up my legs over a few days, then slowly abated over another week. I thought maybe I had Guillain-Barré syndrome. I couldn’t stand without leaning on something. My sleep was unrefreshing – I felt worse when I woke up than when I went to bed. I was having labored breathing and felt like I couldn’t get enough air. My resting heart rate, normally below 60, shot up to between 80 and 100. I had a constant feeling of tightness running from the lymph nodes under my jaw down to my collarbone. Before the end of May, I’d been running 20 miles a week, and now I was totally unable to exercise – just looking at the treadmill told me to stay away from it. And my anxiety was much worse than usual – but that wouldn’t be hard to understand, would it?
Because I had never been sick, I had no regular doctor, only a gynecologist. I went to see her first. When my symptoms proved not to be related to her specialty, she had nothing to offer me. I made an appointment with an internist recommended by my boss’ s wife. At the appointment, she, too, was of no help. She suggested a prescription for an antidepressant. “But I’m not depressed,” I said. “how is that supposed to help?” She didn’t really respond.
October 2003. This was a pretty normal weight for me before I fell ill; I’m in the low 130s or so here.
By the end of June, my symptoms seemed to be stabilizing somewhat, and I was able to go back to work much of the time. By mid-July, I was making it through the workweek without taking time off. But weird things kept happening. I developed episodic vertigo, where the world would suddenly pitch and yaw crazily around me. I felt thirsty all the time for a while. And my weight, which had always been difficult for me to keep a handle on, had started dropping without me dieting or exercising.
I found myself a GP, and after some cursory blood tests, she started me making the rounds of specialists:
A sleep specialist who, at my appointment, spoke to Chimp about me as if I were not in the room, “Then, she will stay at the lab overnight…”
“What will I do?” I asked him pointedly. This seemed to set him back on track. The sleep study found nothing out of the ordinary – no apnea, no narcolepsy – although I had a far higher percentage of light sleep and a far lower percentage of deep sleep than normal, which I now know is characteristic of my illness, as is unrefreshing sleep.
August 2004. I’m down to about 118 here, three months after my first crash. I can see the illness on me, and in retrospect, that the muscle wasting in my shoulders is already present.
A cardiologist, who did a routine EKG, on which I saw the flattened t-waves I had read were characteristic of ME/CFS. At my echocardiogram, he proclaimed I had a “beautiful heart.” He administered a treadmill test, which I passed with flying colors, but after which it took hours for my heart rate to come down out of the 120s, and after which I was flattened for days. (I had no idea what was going on at the time, but this post-exertional malaise, I was to learn, is the hallmark of ME/CFS.) I called his office; he had no insight into either of those things.
A brilliant and kind endocrinologist, the best of the doctors I saw early in my illness, who conjectured I might have subacute thyroiditis or Addison’s disease. He ran a battery of tests and, at my follow-up appointment, told me sadly that he could find “no endocrinological explanation” for my illness. He told me he thought I had gotten a really bad virus, something on the level of mononucleosis. In a move that none of us realized the foreshadowing nature of, he said he would like to send me to an infectious disease specialist. But the one he wanted me to see dealt exclusively with AIDS patients, he said, and he didn’t want to send me to either of the other two in town.
A rheumatologist with poor English skills who took a better history than most doctors did, but then offered me as next steps a chest x-ray and a battery of blood tests. When he pushed the list of tests across the desk to us, Chimp’s look to me spoke volumes. Chimp had had rheumatoid arthritis for twenty years already at that point, and he recognized the tests as arthritis markers.
Through all of this, I was a bit frightened, but at the start, there was never any doubt in my mind that whatever it was, we’d uncover the cause, treat it, and things would go back to normal. As the weeks ticked by, and turned into months, and I racked up negative result after negative result, I started reading about CFS (it was not referred to as ME/CFS in the States at this point). And as I did so, I realized this might go on for a while. I read that if I was to get better, I would do so by the five-year mark; after that, people generally had it for life. Early on in my reading about CFS, I also encountered Laura Hillenbrand’s essay, “A Sudden Illness.” While frightening, I comforted myself with the thought that my illness was not as severe as hers. I would have been more frightened if I’d known that one day it would be just as bad, if not worse than what she describes.
By December, my GP had done all the tests she could think of, including for levels of iron, folic acid, and B12, mononucleosis, Epstein-Barr virus, San Joaquin Valley fever, Lyme disease, and Rocky Mountain spotted fever. She didn’t think I had lupus, MS, or fibromyalgia. She sent me for an MRI; they found a brain in there, but no lesions.
She’d said months earlier that she didn’t want to give me the CFS label as long as there were things left to test for. At this point, there was nothing left to test; by exclusion, I had CFS. I was functioning okay, though – I missed exercising and cooking (the latter of which I’d mostly had to delegate to Chimp), and I’d lost about a dozen pounds, but I was managing to get through the workweek, though I did little but rest on the weekends. I didn’t love my changed life, but I was dealing with it.
A year in, I met with my GP again. She had told me the previous year that she had an aunt who’d wrested with CFS before returning to health after two years. At that one-year appointment, I said to her, “I don’t mind if it takes two years to get better, because…” and she completed my thought, “Because you’re halfway there!” Little did I know that I was going to be a lifer.
Unfortunately, the one really important thing nobody told me – because I didn’t have an ME/CFS-knowledgeable doctor, and I didn’t know how to find one back then, or that I needed one – was never to push it, energy-wise, if I wanted to have the best chance at getting better. But that is another story.
And it’s not what made me sick, but the association was just too much to bear: After that May day, it wasn’t until 2011 that I could bear to eat split pea soup again.
No Poster Girl 
I know the story but reading it breaks my heart as I read it and remember.
Thanks, Mom.
Jocelyn,
I hope you have some good days in their somewhere,this saddens me so.
I know you have had many tests, I wonder have they ever tested you for allergies? Don’t laugh, but have they tested you to see if your allergic to cheese? I know you love it, I wish that it could be as simple as that! If they haven’t tested you for it, God wouldn’t it be great if you eliminated it, and started to recover?
My Great Aunt has CFS, her husband helps out a lot, she seems to he’ll well for awhile and then has a laps.
I hope they can help you Jocelyn. I miss you!
Thanks for your comment, Kathy. Yes, allergies were one of the first things they tested for. I forgot to mention it. They tested a vast array of substances – including quite a few I’d never heard of – and I was allergic to nothing.
I’m sorry to hear your great-aunt suffers from this as well. I hope she stays as well as possible.
Jocelyn, I am really touched by your story. I also have CFIDS and see Dr. Cheney. I could relate some to how you got sick,,,I remember the vertigo, anxiety attacks, and I thought I had guillian barre too because I had this weakness starting in my hands and feet and working its way up my body…really scary. I do hope you start doing better!!!
best wishes, Lisa Schicht
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Do you live in Kern County? It is a very agricultural area. That is where I’m from. I only ask because they tested you for valley fever.
I was sick for a long time with Cushing’s syndrome that came from tumors in my lung and lymph nodes. I went through a lot of testing before I was correctly diagnosed. Leading up to understanding that I was sick, all of my ‘symptoms’ seemed to be just normal problems everyone has. I didn’t know I was sick, I just thought I was not taking care of myself or something. Even though I was eating well and working out quite a bit. I, too, remember my last workout.
I’m better now, although the side effects of the syndrome, chemotherapy, radiation, and missing the middle lobe of my right lung will last forever. After stage IV lung cancer, I’m just happy to be alive.
Your story reminded me so much of my own. I’m sorry that your story continues on in such a way.
Just north of there, MJ. We lived in Fresno for five years, but I commuted to Reedley for my job. We’re both from the Mid-Atlantic originally. Fresno was…a totally different experience!
Cushing’s is often a challenge, I know. It’s one of those things that seems like it should be simple to pin down, but I’ve heard several stories of it eluding diagnosis for quite a time. And wow, glad to hear you made it through what must have been an incredible ordeal. My father battled Stage IV Hodgkin’s from 1978-1982, with three occurrences. He’s been in remission since then, but that ran from my early childhood to tween years, so I’ve seen that experience ringside.
Patients who have my illness are often frustrated that we don’t get the social recognition that other illnesses do. We come in for a fair amount of disbelief because the illness is still not well understood. Nobody wants to have cancer, but most everybody believes you when you have cancer!
I believe you.
Thanks, MJ. 🙂
Thank you for sharing your story. What strikes me is the onset after the flu vaccine. I have a deep distrust for vaccines and I think they are outright dangerous. Do you think, or feel, there is a connection?
I’m not anti-vaccine. They do an immense amount of good, far more than they do harm. On the other hand, I do consider myself a vaccine-injured person. Plenty of other people had the same vaccine I did that day and had no adverse affects, but I think there was something about my system at that moment that allowed the vaccine to start a series of cascading effects. My specialist thinks that’s possible as well – there are other ME/CFS patients whose illnesses have also started after vaccines. But a vaccine is not the only thing that can be a trigger – other people have fallen ill after a flu-like illness or mono.
I just read your story in its entirety, and never have I heard of a condition such as this! I am sad you had to go through such anxiety, tests and everything else – you and your family. Thank you for sharing… Your body is weak, but your mind is as strong as ever! My love to you and your loved ones, God bless!
Thanks, BPR! My mind feels pretty compromised too, compared to what it used to be, but I can summon up just enough of it to look presentable on the internet. 😀
Just passed my 19 year anniversary of the day my life changed forever. Not sure what to say but this: you are not alone. Thank you for sharing this. Love and warm thoughts being sent your way,
Thanks for the sympathy, Nadine, and right back at you.
Thank you for sharing your story! I’m curious about what viruses you have come up postitive with. I have HHV6, post herpatic neuralgia, parvo, strep, and more….but, a lyme CULTURE proved to be positive with babesia and probably bartonella, though I haven’t been tested for that. I finally get that Lyme is at the root of my 15 year battle. I would just want to make sure you had at least a lyme test from Igenix labs…I woulnd’t trust anything less and with new research out that the culture is quite accurate you may be able to get it paid for by insurance.
I had the right Lyme test done at the beginning – that was one of the very first things my GP tested for. I haven’t been tested for a lot of other stuff – I didn’t have a good ME/CFS doctor early on, and I am just getting around to being tested for some of that stuff now. Dr. Cheney, my specialist, tends to assume we are all infected with a fair number of viruses and has us use a number of antiviral supplements and also a number of things that should change the terrain of our systems in such a way that viruses should have difficulty surviving. I’ve benefited from his approach, so something about it is working. Thanks for coming by and saying hello!
Hi Jocelyn
Thanks for sharing your story I was diagnosed feb 2013 after going to the doctors feeling tired etc. I Also had every test possible. I had been tired for years, have had dizzy spells, heart going funny, feeling like everything was distorted these would last for while, had them while driving. Because I was not a good sleeper I would wake a lot during the night I was put on Endep after a while they helped me sleep with not so many wake up times, but I still was tired, I spent my weekends sleeping. I was studying I took time off in Jan 2011 haven’t been able to start again. Stopped working in dec 2012. I am bed ridden most days now I have been tired for about 8 years now. I was working with CALM doing research on our native woylie I was scratched quite deeply. A couple of days after I became very sick. Ever since then my health has been going down hill, Looking back now I can see all the symptoms and after reading your story I can see all the signs, During those years I pushed myself thinking it was my life, I was studying full time, working part time, had two teenagers and was on my own. I now know I have had CFS since 2005, I am grateful for people like you sharing your story it has helped me feel not so alone or crazy. Thank you Karina
Interesting about the vaccine, I got sick the day after a penicillin shot. I always assumed the trigger was the bronchitis I got the shot for rather than the shot itself although one of the early d x for me was “serum sickness” after they ruled out penicilin allergy. All too familiar story, hope your treatment helps.
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Hi Jocelyn, I just stumbled upon this through a comment w/ your blog mentioned on Jen Brea’s Canary in a Coal Mine FB pg. I’ve had ME/CFS since 14 (now 23 but went through a few yrs of improved heath before relapse) and went through the usual heck w/ Drs. I live in the Central Valley! I was wondering if you still do? My dad and aunt are affected by CFS though less than I. Through Vitality101.com I found a Fresno and Clovis support group but then was too sick to attend and now I’m hesitant to go. I’m just wondering if you know of any good ones or other good groups/resources in the area? There is such a lack of help for this condition in the Valley. The best I have found is Dr. Sue Stone MD, Integrative, and Holistic Med. I am currently on dr. Peterson’s and Stanford’s wait lists.
Hi Jane. I was a patient of Dr. Stone’s when I was there. Hopefully you are off one of those waitlists now.