![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
WTF Diagnoses: Myalgic encephalomyelitis
Aug. 3rd, 2019 02:34 pmDespite the fact that myoclonus is the most visible part of my disability, it generally isn't the thing that affects my life on a day-to-day basis (unless I'm in a flare). What has the biggest impact on my daily life is a combination of two semi-interconnected conditions: ME/CFS and fibromyalgia. So WTF are those things? I'll split up those two diagnoses over two posts.
Myalgic encephalomyelitis, also known as* chronic fatigue syndrome or abbreviated as ME/CFS, is "a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion)." (Source.)
According to the CDC:
(Source)
The fatigue I feel with ME/CFS is not drowsiness or sleepiness, I'm just... tired. It's similar to the exhaustion you might experience at the tail-end of a bad cold or a case of the flu. I don't have trouble sleeping, and generally I get around 8-9 hours a night, going to sleep around the same time and waking up around the same time every day; but when I wake up it's difficult for me to get going, and some days I just can't get going at all.
As mentioned above, it doesn't matter if I get more sleep or if I take naps. If I overdo it, though, I will definitely crash and the symptoms will be worse. Generally I need to plan ahead whenever I plan activities, and schedule at least a couple days afterward to rest through the crash. If I'm not in a flare period, usually 2-3 days is sufficient (my crashes tend to be worse on the second day after a draining activity). If I'm in a flare... heh heh... heh heh heh...
Another major symptom of ME/CFS is cognitive impairment, including brain fog and memory issues. When I'm in a flare the brain fog can be particularly bad, which makes concentration next to impossible. I'm a writer, but when I've got brain fog, I can't write. Just full stop. When I first got sick, I would still try, but it was like there was a brick wall in my brain between me and all the words of the English language. I would try the old "just draft garbage and fix it later" writing strategy, but I can't even write garbage when I have brain fog. I just sit there, staring at my computer trying to remember what I'm doing, where I was going with this, how to spell the word "wait" (no, no, it's not "wayt").
The best example I've found of brain fog is this vlog from Jessica Kellgren-Fozard's YouTube channel:
She begins the vlog with a fun day out with her wife, which then leads to a crash—"hitting the wall," as she calls it. The CDC and ME Action Network refer to this as "post-exertional malaise" (PEM). This leaves her exhausted, weepy, disoriented and confused. And even when she thinks she's feeling better (around 5:00), it turns out... she's not actually as better as she thought (8:20).
(Jessica Kellgren-Fozard has a number of excellent videos about ME/CFS, including this one that actually defines and explains brain fog, but I always remember this Christmas vlog as the "Oh my God it's me" video.)
ME/CFS also causes chronic pain, but this is difficult for me to differentiate from the pain I experience from fibromyalgia, another condition I've been diagnosed with. So I'll leave the pain portion for my post about that.
ME/CFS is difficult to diagnose. According to the CDC, most medical schools in the US do not include it in their physician training, which means that many doctors are uninformed or underinformed about it. Many people with ME/CFS have indicated that they had a difficult time getting a diagnosis, often because their doctor doesn't take it seriously or doesn't know about it. I've been very fortunate because my primary care provider does know what it is and was amenable to it as a diagnosis. There isn't a test to diagnose ME/CFS, so it's typically diagnosed by symptom and by ruling out other possible factors. In my case, my doctor did bloodwork and ran tests for every other condition that could possibly be causing these symptoms, such as hypothyroidism. Because all my tests came back clean, my doctor was confident in this diagnosis.
ME/CFS is a bit more common than myoclonus, estimated to affect between one and two million Americans (around one in every 350 people, as opposed to one in 20,000 for general myoclonus). An estimated 75-85% of people with ME/CFS are women. At the moment, there isn't really an accepted treatment. Basically what I've been advised by my doctor is to be mindful of my symptoms, not push, and just hang in there when I'm having a flare. And since ME/CFS is unfortunately woefully understudied and underfunded, it looks like that will be my reality for the foreseeable future.
It can be a frustrating condition, but I've found that learning more about it and connecting with other people who have ME/CFS has helped me come to terms with it better. If you've come across this post and are in a similar position, I hope my blog or any of the resources linked in this post will be helpful for you!
* Some sources differentiate ME and CFS as two different conditions, though the terms are generally used interchangeably on sources such as the CDC, Wikipedia, and my own doctor.
Myalgic encephalomyelitis, also known as* chronic fatigue syndrome or abbreviated as ME/CFS, is "a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion)." (Source.)
According to the CDC:
People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People with ME/CFS may not look ill. However,
• People with ME/CFS are not able to function the same way they did before they became ill.
• ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
• ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life.
• ME/CFS can last for years and sometimes leads to serious disability.
• At least one in four ME/CFS patients is bed- or house-bound for long periods during their illness.
(Source)
The fatigue I feel with ME/CFS is not drowsiness or sleepiness, I'm just... tired. It's similar to the exhaustion you might experience at the tail-end of a bad cold or a case of the flu. I don't have trouble sleeping, and generally I get around 8-9 hours a night, going to sleep around the same time and waking up around the same time every day; but when I wake up it's difficult for me to get going, and some days I just can't get going at all.
As mentioned above, it doesn't matter if I get more sleep or if I take naps. If I overdo it, though, I will definitely crash and the symptoms will be worse. Generally I need to plan ahead whenever I plan activities, and schedule at least a couple days afterward to rest through the crash. If I'm not in a flare period, usually 2-3 days is sufficient (my crashes tend to be worse on the second day after a draining activity). If I'm in a flare... heh heh... heh heh heh...
Another major symptom of ME/CFS is cognitive impairment, including brain fog and memory issues. When I'm in a flare the brain fog can be particularly bad, which makes concentration next to impossible. I'm a writer, but when I've got brain fog, I can't write. Just full stop. When I first got sick, I would still try, but it was like there was a brick wall in my brain between me and all the words of the English language. I would try the old "just draft garbage and fix it later" writing strategy, but I can't even write garbage when I have brain fog. I just sit there, staring at my computer trying to remember what I'm doing, where I was going with this, how to spell the word "wait" (no, no, it's not "wayt").
The best example I've found of brain fog is this vlog from Jessica Kellgren-Fozard's YouTube channel:
She begins the vlog with a fun day out with her wife, which then leads to a crash—"hitting the wall," as she calls it. The CDC and ME Action Network refer to this as "post-exertional malaise" (PEM). This leaves her exhausted, weepy, disoriented and confused. And even when she thinks she's feeling better (around 5:00), it turns out... she's not actually as better as she thought (8:20).
(Jessica Kellgren-Fozard has a number of excellent videos about ME/CFS, including this one that actually defines and explains brain fog, but I always remember this Christmas vlog as the "Oh my God it's me" video.)
ME/CFS also causes chronic pain, but this is difficult for me to differentiate from the pain I experience from fibromyalgia, another condition I've been diagnosed with. So I'll leave the pain portion for my post about that.
ME/CFS is difficult to diagnose. According to the CDC, most medical schools in the US do not include it in their physician training, which means that many doctors are uninformed or underinformed about it. Many people with ME/CFS have indicated that they had a difficult time getting a diagnosis, often because their doctor doesn't take it seriously or doesn't know about it. I've been very fortunate because my primary care provider does know what it is and was amenable to it as a diagnosis. There isn't a test to diagnose ME/CFS, so it's typically diagnosed by symptom and by ruling out other possible factors. In my case, my doctor did bloodwork and ran tests for every other condition that could possibly be causing these symptoms, such as hypothyroidism. Because all my tests came back clean, my doctor was confident in this diagnosis.
ME/CFS is a bit more common than myoclonus, estimated to affect between one and two million Americans (around one in every 350 people, as opposed to one in 20,000 for general myoclonus). An estimated 75-85% of people with ME/CFS are women. At the moment, there isn't really an accepted treatment. Basically what I've been advised by my doctor is to be mindful of my symptoms, not push, and just hang in there when I'm having a flare. And since ME/CFS is unfortunately woefully understudied and underfunded, it looks like that will be my reality for the foreseeable future.
It can be a frustrating condition, but I've found that learning more about it and connecting with other people who have ME/CFS has helped me come to terms with it better. If you've come across this post and are in a similar position, I hope my blog or any of the resources linked in this post will be helpful for you!
* Some sources differentiate ME and CFS as two different conditions, though the terms are generally used interchangeably on sources such as the CDC, Wikipedia, and my own doctor.
