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Tuesday, February 25, 2014

Illuminating the monster; I have Chronic Fatigue Syndrome... and I finally know it.

I have 4 kids and I have Chronic Fatigue Syndrome; and no, they are not the same thing. If you have children, the comparison might sound cute or funny or even accurate, but if you have Chronic Fatigue Syndrome (a very real, often misunderstood debilitating illness also known as Myalgic Encephalomyelitis) you might find the comparison naive, insensitive or even infuriating.

I do not know the exact onset of the illness in myself. I only recently received a diagnosis, but as I learn about the nature of this condition, I've been able to trace significant symptoms back at least 16 years (with periods of remission, mini 'flares' and episodes of moderate to severe relapse.) I spent my teens believing I was merely battling mental illness and the years since believing it was a combination of sensitivity, vulnerability to depression and the strains of motherhood. In the back of my mind or somewhere deep in my body resided a persistent suspicion that there was 'more to it' -- a physiological cause that would one day come to light.
Finding the source after all these years has been simultaneously crushing and relieving.  I'm grieving the loss of  my fantasy that one day I'd beat this invisible monster, be free and function at 100% capacity without needing to take great effort to maintain my energy.  I'm also celebrating because the monster is no longer invisible (to me at least.) I finally know what I'm dealing with and my new found understanding  comes with new tools to care for myself and new language so I can communicate more about my struggles.  I'm releasing a lot of shame, finally understanding many of my (over)reactions or behaviors that have confused me for so long and I'm beginning to separate myself from my illness.
Because I've lived with and in many ways adapted to CFS for so long, my perspective on a healthy individual's experience with fatigue may be somewhat lacking. However, I do believe in periods of remission, I've been 100% functioning (or close to it) and I've certainly experienced relapses of CFS that are debilitating (down to 10% functioning.) 

With that in mind, I hope to explain some of what sets Chronic Fatigue Syndrome apart from the fatigue of being, for example, an over worked mother or the lethargy that comes with minor depression, lack of activity or even episodes of moderate to severe depression. While all of these things can co-exist with CFS, statements such as:

 "oh I totally understand, I only have 2 kids and they wear me out!"
 "It sounds like you are just depressed. Medication can help with that." or
 "I'm sure you'll feel better if you just get some exercise!"
 However well-meaning, are like telling someone with type 1 Diabetes:
 "oh, I totally understand, sometimes when I don't eat enough, my blood sugar gets low and I feel like crap!" or
 "You should just try eating better!" 
Or like telling someone with a head injury that they just need antidepressants (it's true many people suffering from serious injury or illness (including CFS) become depressed and antidepressants may be a helpful part of treatment, but they are not the treatment for CFS any more than they are the treatment for head injury, cancer, AIDS or Arthritis.)

What CFS feels like*

*Keep in mind I'm speaking from my experiences; severity of symptoms ranges from person to person and one flare or relapse may be more or less severe in the same individual.
 I use the term Relapse or Episode here to mean a period of weeks to years in which symptoms are fairly constant, drastically inhibiting normal function.  While I refer to a Flare, or PEM (post exertional malaise) as more acute periods of symptoms triggered during a relapse or even a period of relative health.

The best way I can describe an episode of CSF to a healthy individual is to compare it to a flu (without the puking.)  You feel generally unwell & lacking energy. Early in this current episode, before I got the flu-like aches and pains, I had already started explaining it to my husband by saying "it feels like the flu without the flu... or pain without pain." As it progressed, it started to feel more like the flu, and the pain was real pain.
Post exertional malaise (after only minimal exertion - like grocery shopping, running to catch a bus or an intense conversation) can feel just like that "oh shit" moment when you know a flu is coming on. It is so indistinguishable sometimes that even though I'm getting used to it, I keep finding myself thinking "remember, Lia, one of the kids might have brought a bug home. It might actually be the flu this time. Better wait to eat dinner. You don't want to puke all that up in half an hour!" but a couple hours pass and it starts to feel like the tail end of the flu, which can last for days, but at least i know it's PEM and its safe to eat my dinner.
 Also like the flu, you could sleep for 20 hours and wake up still feeling tired one night or you might find yourself awake tossing and turning because of body aches, chills and sweats the next night.
When you think you're starting to feel better (or you're just sick of laying in bed) before you've actually kicked the flu and get up to clean the house for a few hours, you regret it cause you feel horrible again (Moms I know you've all done this when the whole family was sick!) But unlike the flu, you can't just wait CFS out another day. After a week (or a month or 6 months,) you don't just get fed up with laying around and push yourself out of bed and find that it feels amazing to be active again, get the whole house cleaned, catch up on emails, phone calls, errands etc. During a relapse of CFS, every time you get up to tackle those things you hurt or shiver or sweat or crash (or all of the above plus some) at the end of the day. You have to pace everything out in tiny little increments with rest in between and there's never enough energy to get through half of the things you want to do each day. (for more on budgeting energy with chronic illness please read: The Spoon Theory written by Christine Miserandino)  To make it more frustrating, there doesn't seem to be an exact science to how much exertion it takes to cause PEM, or when exactly it will hit. It takes a lot of guesswork and careful attention to your limits on any particular day.


The exhaustion from CFS is unrelenting.  I'm usually very sensitive to caffeine to the point where I know drinking a coffee or soda after 1pm will keep me up at night; but when I get to this point far past tired, I don't even feel the effects of caffeine. I could drink 2 cups of coffee and go straight down for a nap. For a while I was sleeping 10-12hrs at night and taking 1-2hr nap in the afternoon (any time my 20mo daughter was asleep and my other kids were at school or safely occupied, I'd sleep.)  The medication I'm currently taking helps me maintain a more normal sleep schedule; coffee gives me a little boost again, but I still have to be very careful with it -- it's kind of like if you've stayed up 24hrs straight... coffee might give you a boost when really, you should be resting (more on sensory overload later.)
The exhaustion is not just physical; it's mental and emotional too.  Some days after getting my 5 year old on the bus, dressing my 20 month old, getting her in the car with me (notice I didn't mention getting myself dressed? that's because most days I don't. To save energy, I keep on the sweats I put on the night (or 3 nights) before) and driving 5 miles a doctor appointment, I am so burnt out I'm near tears in the doctors office.  Of course this gives the impression that I'm severely depressed.  "No," I say, "Imagine you ran a marathon and then stayed up all night, your whole body aches and you're trying to answer questions but you can't think straight."  Yeah.  That's Brain Fog. It is already so fucking insanely frustrating trying to explain all the crazy symptoms of this illness, but then add to that you can't put a sentence together? well, yes... I suppose that is pretty fucking depressing at times!!
Brain fog causes a lot of typos... not just typing. It happens with writing, too (technically known as dysgraphia.)  Sometimes I write the second letter of a word first, or the first letter of the next word I was going to write, or something so unintelligible I'm not sure where it came from... the more burnt out I am the worse it gets.
When I've reached my energy limit (used up my spoons as Christine Miserandino would say. you really need to read her blog!) I find myself struggling to focus my eyes -- staring off into space.  I have to remind myself over and over and over what I'm doing, where I'm driving (usually at each turn or intersection) or what I came downstairs for 'put the bowl on the sink. fill water bottle...'  (then, oops! i forget the water bottle downstairs and don't have the energy to go get it.) I sigh a lot to myself 'sigh, okay, what's next? put away cereal. sigh okay, what's next? two more bags of groceries... pasta. sigh okay, what's next?..."

I lose words.  Sometime staring off for 15 seconds is enough to retrieve it; other times I give up.  Of course, these things happen to most people when they are tired, but with CFS it's amplified so, for instance, instead of accidentally calling one kid by the others name (K-Ja- I mean Logan! we've all been there.) I've completely spaced out my nephew's name while looking right at him, and drew a complete blank when talking about my goddaughter to a friend (I know their parents will probably read this & I hope they understand I'm sharing how extreme brain fog can be because I deeply love & cherish my nephew & goddaughter and those space-outs were quite disturbing to me!!)  
I find it extremely hard to focus on handouts the kids bring home from school (6 months ago we were homeschooling but my inability to keep up with that became clear long before the worst of this episode hit me) and numbers become extremely confusing. Even third grade math is sometimes challenging and I have to delegate to my husband. 
I write down everything important. I keep notes about what I ate and when I took my meds and my symptoms to try to make sense of it all, and so I don't accidentally take my medication 3x in a row or forget it completely.


Along with exhaustion and brain fog, PEM is often accompanied by pain.  Mine is  mostly in my hands, wrists and arms (probably because no matter how easy I go on myself, I still lift a twenty something pound baby several times a day.)  Sometimes it feels like I spent the whole day before lifting weights, or doing push-ups.  Sometimes it feels tingly, or creepy and fits the description of carpel tunnel syndrome (I was actually convinced that's what it was when that symptom flared up several years ago while I was doing a lot of sewing work.)  Sometimes it feels like a rubber band wrapped tightly around a bicep or forearm (on one or both sides.) 
I get chest pain which would really freak me out had I not had a chest CT done a few months ago, because sometimes it feels like pain in my lungs or heart. Usually, though it's just to the right of my sternum and seems to be in the joint or ligaments.
Sometimes my lymph nodes ache or tingle (an electric feeling) but they are rarely swollen.
At night my arms and legs ache and/or go tingly or numb.  Sometimes its a burning sensation, like when you come in out of a real cold wind that's chilled your skin and the numbness just starts to melt away.
Sometimes its that over-all flu-like ache that comes with a sort of internal quivering that feels intense and makes it hard to sleep even though the pain is not acute.

Sensory overload

One of the things I struggle with the most is sensory overload.  Noise, light, activity, being touched, conversation, even thinking can be overstimulating, especially when exhausted.  I have a hard time connecting in conversation, remembering details of events, or names of people I meet when I'm overloaded, and I have a hard time making eye contact even with those closest to me.  When it gets worst, I start to lose my shit. Then wondering why I'm suddenly losing it adds more stimulation and I start to feel panicked.  Then depressed.  I've spent a lot of time analyzing different stimuli that's triggered this state - psychoanalyzing myself, questioning myself, crying uncontrollably wondering 'WTF is wrong with me???'  Learning that this was part of CFS is a huge relief and I'm starting to learn to catch the feelings sooner and remove as much stimulation as possible (instead of creating more by over thinking it.)
When I feel myself starting to burn out, the urge to keep going is maddening.  Even when I can feel the crash coming, and can force myself to sit still, I can't forcing my mind to stop (or the kids to calm down) can be nearly impossible. 
  Its like when you are on the interstate and notice you're gas tank is nearly empty.  You know that slowing down will conserve fuel, but the thought of getting stranded on the roadside makes  you so anxious, you can't stand to drag that feeling out any longer so you just drive faster, praying you'll make it to the next gas station.
 I have not yet figured out a way to come down without drugs, herbs and mindfulness (usually a combination of all 3) Being still and alone is often not an option, especially if you have young children, but when I can get it (with help from dad,) a hot bath alone helps ease physical aches and anxiety.

Other annoying symptoms

(often exacerbated by coexisting conditions and/or medications to treat symptoms)
 - Tinnitus (ringing in your ears) 
 - over (or opposite) reaction to medications (often needing to start at the smallest possible dose)
 - Mouth soars, gum irritation, dry mouth, geographic tongue or thrush
 - Hair loss, brittle nails
 - muscle spasms, restless leg syndrome or itchiness
 - depression and/or anxiety
 - headaches that can last for months
 - pain or swelling in the lymph nodes
 - thyroid problems
 - weakness, dizziness, blood pressure problems, feeling faint or carsick
 - irritable bowel, irritable bladder, nausea, food or chemical sensitivities
 - sleep disturbances, sleep apnea, trouble with circadian rhythms 
 - trouble gaining, losing or maintaining weight

The big picture

I want to end this by sharing (especially for all my friends and family reading this) that this episode has been by far the most difficult I've experienced physically and at points, the emotional has been extremely difficult to manage as well.  I've been immersed in this illness -- experiencing symptoms, reflecting on the course of it throughout my life, accepting that I am a person who is chronically ill (still seems weird to say) and that relief will probably not come in the form of a cure but in managing symptoms, pacing and appreciating remissions... Not to mention fears that I might have passed down a genetic predisposition to any of my children... I'm in a phase of examining lots of difficult symptoms, feelings and emotions, some of which I am opening up about for the first time.  But it's a process of untangling myself from the illness... So when I seem to be complaining or focusing on the negative, or not having anything but CFS to talk about, know that this is not who I've become.  I'm leaning into the illness, not becoming lost in it.  I am not stepping towards defining myself as an ill person, but stepping towards knowing who I am along side illness. I'm learning how to take better care of myself and how to be open when I struggle rather than ashamed.  So while this phase might also be uncomfortable for you to hear about, and might even at times create distance between us, it is not pulling me away from you... This process is moving me towards being a more genuine, more aware version of the person that you've known and loved.

Special thanks to my husband, Jason for going through much of this with me, being loving, supportive, and extra helpful around the house; to my kids for accepting that they don't get the whole mom I wish they had; to my family and friends who have watched me struggle over the years, who help out with the kids, offer emotional support, and listen to me cry when I need it (Hollie, I'm thinking especially of you!)  And thank you to the doctors who listened to me compassionately, who were willing to investigate what they didn't understand, and who remain open minded when I come with suggestions for tests or treatment (I cannot say the same of all the doctors I've seen.)  Many people struggling with chronic, invisible illness are faced with disbelief from even those closest to them which must be devastating... I'm so thankful to be blessed with multiple circles of amazing, compassionate, supportive people.

I hope to share more here soon -- I'd like to write more about how CFS differs from mom-fatigue, and more about the difference between depression and CFS, and share more about how I felt during flares (when I didn't know they were flares of CFS) versus how I feel looking back... but it's taken a lot of time and energy to get this far, I have far more ideas to share than I have energy to write them, so in the interest of pacing myself... I will write more when I can.  Thank you for taking the time to read and care about all of this. And I will be happy to address any specific questions as best I can in the comments or via personal message.


  1. that absolutely sounds like lyme disease. look up ilads ( a lyme group) and find a lyme literate doctor-- you need serious antibiotics to get rid of it good luck look up lyme symptoms they match yours exactly to the t

    1. lyme has been on my radar for a while but the initial test was negative and I'm kind of at a loss for what to do next... I'd be open to suggestions of LLMDs in the madison, WI area if anyone reading this knows any (feel free to message me privately) I haven't pushed to pursue so far because from what I have read it seems like there's no certainty that antibiotics would work on an infection that's gone on for 15+ years...

  2. read the ilads website- they have links to llmd's. You can test negative for it and still have it-- the tests are unreliable. Also google lyme forums and you will get on there and see the people are having the EXACT same symptoms as you. Also google dr Richard horowitz with lyme and you will see he is an expert-- there is much you should know- you need a llmd, antibiotics and anticycstics- get on that lyme forum asap here is the link

    1. Thanks. I did find a couple leads for Drs.... it'd be a big plus if one is covered by my insurance! ugh. it's like a full time job just trying to figure out what to look at next & being exhausted the whole time sucks.


  4. here are some links:

  5. One of the best all-inclusive descriptions of CFS/ME I've read since being diagnosed 3 years ago. Thank you.

    1. Thank you so much for the positive feedback. As I'm sure you know, getting anything done through brain fog and pacing can be really hard... it's easy to think how much better I might have been able to do (write) something if I was functioning even close to 100%... So I'm really glad that you feel I was able to articulate well. It means a lot to me to be able to be a voice for myself & others struggling with this <3

  6. One of the best all-inclusive descriptions of CFS/ME I've read since being diagnosed 3 years ago. Thank you.

  7. i agree with above.........did u check out bout lymes ? there r so many illness wot present the same symptom ! its all so confusing, an i struggle to read let alone remember wot i ave read lol

    look forward to yr next blog......debs x

    1. I did see a dr who believes I have Lyme and will treat based on symptoms (without a positive test) but I still feel apprehensive about starting antibiotics... I'm reading "Why can't I get better? Solving the mystery of Lyme & chronic illness" now and feel certain I'll be more confident after I have a better understanding of the big picture of Lyme (I'm participating in a CFS study this week, so would wait to start the antibiotics til it concludes anyway.)

  8. M.E. has to be chronic lyme disease. You can get better. I have all the symptoms of M.E.(otherwise known as neuro or chronic lyme) and I am on an herbal protocol based on Stephen Buhner. Read the short book Suffered Long Enough by William Rawls MD. It's written by a doctor who healed from fibromyalgia and Lyme disease. I've been on the protocol for almost 2 months and many of my neuro symptoms are going away. A sugar free, dairy free, gluten free, 50% veggie diet is helpful for neuro symptoms. The days with brain fog are farther apart and fewer. I am starting to have more days with regular energy and less muscle and neck, back and hip pain. Just because you tested negative for lyme doesn't mean you don't have it. Lyme tests are notoriously inaccurate and doctors are unwilling to even admit it exists. I had an infectious disease doctor tell me I didn't have lyme even though I tested positive for 2 bands. (CDC requires 5) Those with chronic or neuro lyme don't get better on antibiotics alone and get better with herbs. Here's the link to the program that I'm on. (I am in no way affiliated with them)