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CFIDS/CFS/ME: The illness that’s exhausting even to say.

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This August, after a year of testing and nearly two years of wondering why I was so sick and so tired, I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). (Also known by the horrible name of Chronic Fatigue Syndrome (CFS), and as Myalgic Encephalomyelitis or Myalgic Encephalopathy (ME) elsewhere in the world.) I prefer CFIDS because it was the immune dysfunction that was the final clue in my diagnosis, but sometimes I honestly wish we’d call it Myalgic Encephalomyelitis here in the US because at least then disclosure of my illness wouldn’t be greeted with skepticism and comments of “yeah, I’m really tired, too.”

“[CFIDS] is a complex, debilitating, and often disabling illness which affects multiple systems of the body. Most people with CFIDS experience profound exhaustion, post-exertional malaise, sleep disorder, neurological and flu-like symptoms, and cognitive problems such as difficulty thinking, processing, and remembering. The illness may last many months or years. Symptoms may vary in severity and may wax and wane. There is as yet no known definitive one cause.  It is likely that there are several triggers that set off a cascading panoply of pathological changes in many of the body’s systems. While there is no known cure many of the symptoms can be treated. Some patients show improvement over time, while others may show little improvement or a worsening of symptoms.” [Source]

Before finding out I had CFIDS I thought I had many different illnesses all at the same time. Because of the huge variety of symptoms it seemed logical that I could have the flu at the same time as I had worsening of my asthma and perimenopause, and that maybe, just maybe, my PHN was causing my severe exhaustion. But I didn’t have the flu, both my primary care doctor and my gynecologist ruled out perimenopause, and, well, nobody really knows what PHN causes so maybe it does contribute to the fatigue.

I kept getting more and more tired. Now, when I say tired, I don’t mean I was yawning and had to get my full eight hours of sleep every night. I mean I sleep over 12 hours each night and still require a 4 hour nap during the day, if not more. Sometimes I sleep for a full day straight. I noticed I was even more tired after doing things. Any things. Going out to dinner, visiting my family, swimming in the pool for 1 hour, sitting in class for three hours, all those things caused me to sleep for 6-8 hours after them and be nearly unable to get out of bed for a day or two after.

We tested for everything. If it in any way could cause these symptoms, we tested for and eliminated it. I don’t have Lyme disease, I don’t have MS or Lupus. My blood sugars are just over the line high but not enough to cause this fatigue and certainly something that could and should have been taken care of with a prescription. We’ll be testing for sleep apnea in a few weeks but I’m doubtful that’s the issue, and even if it is common enough to have that comorbid with CFIDS.

This past summer was “the summer of infections.” First there was the infected cyst which caused me to run a fever from infection. I stayed in bed for nearly a full week after the surgery to clear it, and told myself that even minor outpatient surgery can take it out of you. Then exactly (and I do mean exactly) two weeks later I had strep throat. The doctor who diagnosed it thought the timing was a bit weird, so close to my previous infection, but could see just by looking at how red and raw my throat was that I had an infection. He asked what antibiotics I’d taken the previous week and made sure to prescribe different ones. Then about three and a half weeks after that I was feeling flu-ish again and noticed some swelling in my lymph nodes. Swollen lymph nodes mean infection so I called the doctor and off I went. By the time I got there, one day later, the lymph nodes on the right side of my neck had swelled up into a huge lump running along my jawline, clearly visible just by looking at me. At this point, I wondered if I had some auto-immune disease.

Now, this swollen lymph node thing was scary. The doctor I saw immediately sent me for an ultrasound and they nearly immediately booked me for an MRI. After the MRI, about fifteen minutes before I was supposed to leave the house to take a Spanish final, my doctor called me. She told me to get a pencil and paper. She told me to sit down. Then she told me about cancer. I wrote everything down, I read it all back to her, and I promised to be in touch with her after I saw the Oncologist in a week. Then I took my final, numb all the way through.

Later that day I picked up the MRI report and copies of my blood tests to make sure I had them when I saw the Oncologist. (And because my doctor made me promise not to call my family until after I read the reports so I could answer any questions. Being an amazingly wonderful doctor, she also made me promise to tell my Spanish professor what had just happened–I broke down in nervous laughter after she told me the diagnosis and managed to sputter out that I had a final to take–and to have the professor contact her if there was any problem.) I read them, I called my husband and mother, then I rested. A few days later I was ready to read the MRI analysis again and I saw that it said it could indicate cancer (maltoma, scary word) but that it could also indicate long-term infection but that diagnosis was doubtful since “the patient has not been sick.”

But I had. I’d been sick all summer long. I sent my doctor a fax reviewing all my infections (they’d been on weekends through the urgent care clinic, not directly through her) and told her that I absolutely wanted to forge ahead and make sure that it wasn’t cancer, but I also wanted to make sure we didn’t ignore the infection/illness aspect. That was the turning point.

The Oncologist was late to my appointment. He apologized, saying he was those few minutes late because he was reading reports from my primary care doctor. She’d told him about all my infections and my concerns. (When I said how wonderful that was that they communicated like that, he told me that was why he moved to my hospital, because it had a reputation for teamwork. An incredible thing for me, that’s for sure.) He asked me all sorts of questions about my entire medical history. He told my mother he was thrilled she was there because he needed to know things about my birth, infancy, and childhood health. I told him every symptom I have: the fatigue; the post-exertional malaise; the way I always feel as though I’m coming down with the flu; my chronic sore throat, earache, and cough; my new type of headaches; the way I forget common words; and, yes, my swollen lymph nodes which by the time of this appointment, a week after the MRI and two weeks after the ultrasound, had already shrunk nearly back to normal.

He decided to send me to an ENT for a laryngoscopy (yes, that is “up your nose with a rubber hose” as the ENT said) and let the ENT decide if we needed a biopsy. He thought they might be able to do one right there, and indeed they were set up for one when I went in a week later. He also took some blood, though he didn’t tell me for what and I didn’t ask. (I was busy worrying about my sky-high blood pressure and how the oncologist was calling my primary care physician about it right in front of me. I thought she might come downstairs and make me stay in the hospital until I calmed down! Turns out they just increased my medication and released me to my mother’s care, as I was spending the weekend with her anyway.)

A week later, the ENT felt my neck, then looked at my lymph nodes through a tiny little tube. They were swollen but not horribly so, and nowhere near what they had been. He decided a biopsy was not needed and that he’d see me in a month to check. (I’ve just seen him again and he saw and felt nothing at all unusual about my lymph nodes. I have a followup with the Oncologist, an MRI in November, and another followup with the ENT to make sure, but it’s all looking very good.)

After that initial ENT visit I had occasion to visit my primary care physician yet again. I was getting worse in everything and since it seemed I didn’t have cancer, what did I have? We’d already ruled out so many other possibilities. She told me the Oncologist took blood to test for presence of Epstein-Barr Virus and Cytomegalovirus, and that there’s evidence that I have been in contact with or had EBV, but that I do not have CMV. Then she told me that based on this and everything else, I have CFIDS.

That made so much sense to me. Every single symptom I have, no matter how weird, can be explained by CFIDS. It is often linked to EBV, and sometimes linked to shingles. Even my weird sore throat and the way the other night I had to pantomime “bag” because I couldn’t think of the word can be explained by CFIDS.

I’m not sure yet how I feel about this diagnosis. It’s a relief to know, but if you look back up at the MA CFIDS/ME & FM Association definition you’ll see that there’s no cure. I have a lot of learning to do. It’s become important that I treat the symptoms because I cannot treat the disease. It’s crucial that I conserve my energy and prioritize every part of my life. I can literally only do so much so I have to make sure I’m doing the important things. I’m not able to work. I’m trying to go to school but it’s a tremendous struggle. My life has changed and not for the better.

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Written by tldegray

September 15, 2010 at 4:00 pm

2 Responses

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  1. See, more people need to read posts like this, and then more people would know that “chronic fatigue” does not just mean “tired.” Thanks for writing this–there’s a lot of stuff I didn’t know about in here.I’m tired a lot, I think partly because of depression and partly because of IBS (invisible chronic illness woo) and partly just because that’s how I am, but I don’t have CFS. I’ve never been so tired I had to sleep 12 hours a night and then have a 4 hour nap. I just can’t keep being active for a long time; I have to rest a lot. I feel like my energy level is just lower than a lot of people’s.For example: a couple of weeks ago I was dogsitting for my parents, and I had to work that evening, so I took the dog for a long walk in the morning. Most of my shift at work, I felt like I was going to pass out. I was lightheaded and shaky and nauseated and so tired. I was so angry at my body, that I can’t even go for a walk and go to work on the same day. I don’t even work full-time.Maybe it’s just the way my body is, I don’t know. But I completely identify with what you said in another post about people thinking you’re slacking off. I feel like people have thought I’m lazy my whole life just because I am not as active as other people, because I need to rest a lot. It pisses me off and it also makes me afraid, because what if I can’t handle a full-time job and then I’ll never be able to support myself? What if I get a full-time job, but then I come home every day unable to do any of the things I want to do because I’m too tired?Having people tell me I was lazy my whole life made it really hard for me to trust my body. Because I would feel tired, but people would tell me that I was just lazy or slacking off or I just needed to get up and move around and I’d be fine. So I started to believe them. I started to believe that everyone got this tired and I was just lazy for not working harder to combat it. That I just needed self-discipline or something. It’s hard to work against years of messages like that. I’m trying to learn now, but it’s hard.Anyway, sorry to rant about my personal problems all up in your space. I really appreciate and identify with your chronic illness posts. Thank you for writing them.

    notemily

    September 22, 2010 at 6:18 am

  2. I don’t mind at all if you use this space to let off some steam. We all need to let it go sometimes or we’ll explode, I think. It’s a horrible feeling when you start to believe the bad things people say and distrust your own body. (Or mind, for that matter.) And chronic illness is scary as hell. There are plenty of other things that can cause chronic fatigue. It might be worth it for you to get some blood tests, if that’s possible, just to rule out causes of fatigue. Or maybe you’ll find a reason and have a cure, which would be a wonderful thing. Good luck. And come back any time.

    Tammy DeGray

    September 26, 2010 at 4:38 am


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