Posted in Life

5 Chronic Fatigue Syndrome symptoms you don’t know

5 Chronic Fatigue Syndrome symptoms you don’t know Posted on 16/01/201813 Comments
Ahoy, hello! My name is Jenny. I am a thirty-something human female from Manchester in the north of England. I enjoy rainy days and sad songs, custard donuts and salt & pepper chips and beer, lentil dhal and fried okra, X-Files and Twin Peaks, fierce fat heroines and mental health advocates, dogs and cats and otters and a very special beirdo. To paraphrase Sylvia Plath: "I blog because there is a voice within me that insists on writing lots of ridiculous chuff".

I was diagnosed with Chronic Fatigue Syndrome (CFS/ME) in September 2016 after more than a year of symptoms. (You can read my diagnosis story here.) My doctor didn’t use the term M.E. (myalgic encephalomyelitis), I assume because she felt it would lend too much authority or seriousness to the condition. She, like the majority of medical professionals in the UK, believes it’s a psychosomatic condition that can be cured through counselling (CBT to challenge “unhelpful” attitudes) and Graded Exercise Therapy (pushing oneself to do more exercise).

Times are a’ changing at the moment though, or they certainly seem to be. Biomedical research is starting to identify common disruptions in the cells and immune system (which tally with my own private blood test results, which my doctor straight up dismissed).

The (self-distributed) documentary Unrest, chronicling the systematic dismissal of CFS/ME patients worldwide and the struggle to be taken seriously, has recently been nominated for an Oscar and is currently available to view on Netflix.

Despite this, there remains a huge amount of misinformation about this condition. “Chronic Fatigue Syndrome” doesn’t sound too life-changing. We all get tired, right?

What is CFS/ME?

Taken from the Unrest film website, this is an accurate summary of the condition:

“Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of the immune, nervous, and energy metabolism systems. The effects of ME are devastating enough to leave 25% of patients housebound or bed bound.” [Read more]

I want to explore a few of the lesser known symptoms here; I suffer from all of these, pretty badly at times. I’m lucky that I don’t experience very bad pain beyond muscular aches and throbbing, but the cognitive effects impact my life a lot. The path to understanding one’s symptoms and -ideally- getting help, usually begins with a blood-tested diagnosis and referral. I didn’t get either of those, and bumbled along for quite a while getting life tips and hacks from Pinterest and websites aimed at folks with other neurodiversities.

If you want to explore my pretty thorough guide to studying with CFS/ME (lots and lots and lots of resources) you can catch it over here at my study blog. I actually began my part-time Master’s degree in September 2014 and fell ill towards the end of the first year of study. I therefore promptly took two years out, and returned in September 2017 with a very different brain. It’s this before and after experience that has really helped me quantify and define some of the changes to my body and mind that have taken place. My doctor continues to insist that I am victim to some new and insidious mental health symptoms and that I will recover. I have been treated, for the most part successfully, for my mental health diagnoses for more than 20 years, and I believe that she is wrong.

My situation is not unique, and because of this common dismissal of CFS/ME patients, research into the cognitive impairments typical of the condition is sparse (but does exist).

This is simply my own experience of these symptoms, and they may be different for everyone. If you experience unique cognitive or neuro- symptoms not covered here, please feel to leave a comment and let me know!

Difficulty in processing information

I studied for my undergraduate degree in the mid-2000s. I was 23 when I began, and as well as studying full time, I worked around 20-30 hours per week in an art house cinema/venue. I met every deadline, spent a lot of time with friends (and playing The Sims), dealt with ongoing mental health difficulties, and managed to graduate with a pretty respectable 2:1. I remember being extraordinarily proud, particularly as I’d dropped out of Uni on the first attempt when I was 18. Despite the various challenges that life threw at me during those three years, I was always able to spend hours and hours with my nose in a book, staying up ’til the wee small hours reading in advance of tutorials, and making a 9am lecture the next day, tired, but lucid and functional.

I even read for fun back then. For one year of the degree, I lived with a friend who I’d met at my part-time job. She was studying a Master’s in Creative Writing and powered through a novel every single week. Every 2 or 3 weeks she’d persuade me to read a particularly good one, and I got through quite a few during that time.

A flatlay showing a laptop, coffee, plant, and notebook and pencil with blank pages.

It’s difficult to explain the way in which I struggle to process information now. Imagine you’re reading a riveting novel, but the TV and radio are on pretty loud at the same time. Imagine that novel is actually an in-depth Guardian article, and as well as the TV and radio, people are jumping about the room around you. Imagine that in-depth article is a paper in a scientific journal, and someone is also calling your name over and over. You’re likely to be able to make it through reading that content; you might even be able to remember the salient points. But putting it into a broader context might be tough. And if you’re expected to read 6 of those articles in one week under the same conditions, put them all into a broader context, and talk intelligently about them in a group of others, then it gets really tough.

On top of working full time, this is how my part time study plays out nowadays – I get there, but it takes a long time, and it’s tough going. Using a Pomodoro timer helps me enormously; if I concentrate for short bursts, and take breaks in between, I can muster a greater effort to concentrate more fully.

Poor memory or word recall.

This symptom is particularly embarrassing at my full-time job. I’ve worked in higher education for 10 years and have always had an excellent reputation within my institution. I’ve been able to express myself articulately and intelligently, but more and more I find myself in meetings where a single word or phrase refuses to come to mind. It’s often key to the point I want to make, and as a big fan of choosing the right words, it frustrates me immensely when I get stuck. I’m usually left tailing off or pointing in a pretty feeble manner to my head and tap-tap-tapping to let people know that it’s in there somewhere.

No-one has ever really guided me on what to say in these circumstances; my close colleagues know I have a CFS diagnosis, but the cognitive symptoms are so under-discussed that I doubt they understand what’s really happening. It’s difficult broaching the subject when CFS/ME has such a terrible reputation (it was once, after all, known as yuppie flu).

Low-grade cold/flu type symptoms.

Most days I wake up feeling pretty groggy and sniffly, like the first hint of a cold, one that never arrives. The muscular aches and throbbing that we experience when we catch a particularly nasty flu is a very common symptom for me. Sometimes it feels like someone is poking or prodding the skin, and joints (elbows, wrists, knees) ache. This symptom can progress to full-on physical weakness and exhaustion if I push myself too hard, but the low-grade flu-type symptoms are almost always there, and I’m fairly accustomed to it these days. (This symptom, apparently, is pretty typical of immune system dysfunction, and my own private blood tests -the ones my doctor dismissed- confirmed inflammation in my system akin to that seen when the body is fighting an infection.)

Dead arms and legs.

Related to the above – if I push myself too hard, I get full on dead limbs. The unluckier amongst you might remember older siblings or nasty kids at school giving you a dead arm. This creeps up on me sometimes… Recently I agreed to go on a Costa coffee run for my office-mates. I walked the 4 minutes back from the shop with two regular americanos in a cup holder in my left hand, and after 30 seconds or so my arm was entirely dead. I’d been pushing myself way too hard in the days preceding, so it wasn’t too surprising.

The curious thing is that serious mental exertion, or exertion using my legs, can also bring on the dead arm(s). I won’t pretend I understand this one at all. Living with my weird muscular anomalies is becoming pretty normal these days!

The “20% battery” syndrome (aka “you don’t look sick”).

Jen Brea has used this analogy a lot during promotion for Unrest. I guess it relates to the spoon theory, and helps people to understand why we often don’t look sick (or even fatigued).

“The way I describe it is that I feel like I’m this battery that is broken and only charges 20%. As long as I stay within that 20%, I can function really well and do a lot of the things that I want to do in the day. It’s different for everyone, where that metabolic line is. When I crash, all my systems can’t work. It’s sudden, and I won’t know that I have it until I start getting symptoms. It depends how bad it is, but oftentimes I’ll just be completely immobilized.”

Personally, I get to maybe 60% most days if I’m doing nothing other than going to work, going home, watching some TV, maybe cook dinner, and get to bed. In reality I need to cram in part-time study, dog walking, housework, hobbies, social activities, etc. Nevertheless, while I’m still in that 60% ‘zone’ I appear pretty normal. I don’t push myself too hard because otherwise I know I’ll hit that 60% much quicker than I would otherwise.

The reality.

In my own life, the reality of this condition that my doctor doesn’t even believe in solidifies more as time goes by. I’ve adjusted in a number of ways… I rely on Mr J-M possibly more than I should, oftentimes for helping me just remain committed to what should be my own responsibilities. We pay for a cleaner, to ease up the burden on the both of us, and allowing me to concentrate on my studies. I’ve recently made a formal request to reduce my working hours to part-time, for the first time in over 20 years of continuous employment (aside from the 3 years I studied for my undergraduate degree). I am incredibly lucky to be in a situation that makes this reduction in income possible. I break promises and fail to attend events that I would otherwise dearly like to take part in. I’m not able to do extra-curricular volunteer work, as I so often used to. I’m also fairly sure that the quality of the output of my postgraduate study is impaired, despite the support mechanisms that are in place. I don’t suffer from CFS/ME even nearly as severely as many patients, but the effect on my life is still absolutely tangible.

Suffice it to say that my own mental health diagnoses complicate my CFS/ME symptoms in ways that I still don’t entirely understand. There are times when I question myself, but that happens more infrequently as time goes by and I understand the consequences of pushing myself too far.

I continue to be sorely disappointed by the lack of any input or support from the NHS, both locally and in the UK more widely. The online CFS/ME community is so supportive, though, and organisations like the ME Association and ME Action Network are on our side. I do hope for acceptance in my own lifetime, if not for a cure. Seeking out ways to pace myself and work with this new and different brain of mine is also very helpful. Whilst life moves a lot more slowly these days, I am still determined to achieve a few modest goals (and who knows, maybe a few more ‘immodest’ ones!)

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  1. For what’s it’s worth, I’m hopeful that the perceptions of ME/CFS are changing. In school, I’ve never heard of it mentioned in the context of a ‘mental’ illness, always a physical one, and definitely not one that should be treated with CBT. It’s not much help right now, but at least the next generation of doctors will be better informed than your current GP.

    1. Thanks Joey, I do hope so! At the moment in England, Wales, and Scotland the NICE guidelines still advise that GPs ‘prescribe’ CBT and GET. That’s basically the formal line from the NHS right now, and that’s why my GP couldn’t refer me anywhere even if she wanted to. However, the WHO class it as a neurological disease, the CDC no longer recommends CBT/GET, and the NHS in NI has started to amend its guidance. So I do hold out some hope!

  2. I can’t believe you manage study and work and blogging! Amazing 🙂 totally agree about memory and word recall being a hard symptom because i too pride myself on being articulate. Thanks for sharing this.

  3. That’s the only thing I do like about the American “healthcare”. If I’m not happy with a GP, I can look elsewhere, as long as they’re “in-network” in my insurance. I did leave a doctor that treated me like my fibromyalgia was psychosomatic and whose office told me that my Hashimoto’s Thyroiditis was the reason for my hypothyroidism, but that it’s not an autoimmune disease. I won’t stay with an ignorant doctor. I’d love to move back to the UK, but also hesitate on the NHS stance on natural desiccated thyroid. I’ve read that doctors have to take responsibility if anything happens to their patients because it’s not regulated, and not too many are willing to do that. It’s regulated in the states, and more people are turning to it because it alleviates more symptoms. With all the research we do, it’s frustrating to deal with doctors who don’t have enough training in the illnesses, and therefore lack the ability to treat us effectively, and like to claim it’s in our heads. Shame on them.

  4. Out of curiosity what blood tests did you have done privately. I had glandular fever when I was 16, and symptoms returned each Autumn for a couple of years. My Mum says I never recovered and, like you words evade me a lot, I’ll know what letter they start with and what the definition is, but not the word itself. I also broke my back when I was 16 and have had pain with that ever since too. So for the last 20 odd years I have put most things, including tiredness down to my chronic pain. But the last few years ive been mega tired again, have no patience, tingly fingers, dead feet, unable to control my body temperature (usually freezing), feeling achy generally, strange pains in fingers and top of hands, sleeping for 12+ hours waking for a few hours and then sleeping again for another 10 hours, brain fog has worsened, had a uti for 3 months before it finally cleared. Dr did a basic blood test and showed slight B12 deficiency (I was wondering if I was menopausal, as periods are all over the shop) but she didn’t put in for that, which is the test I’d asked for! Was thinking perhaps I had fibromyalgia, but I’m not convinced of that. So I’m returning to the possibility of ME – even if the Drs don’t recognise the test at least I’d know. I too had tonsillitis every month at least as a child.

    1. I had a few tests; three full screens from a private pathology lab, as below:

      General Health: Thyroid (FT3/FT4//TSH) Profile
      General Health: Anaemia Profile
      General Health: Blood Biochemistry Profile

      Pretty much everything!

  5. For what it’s worth… The vocabulary issues are my favorite thing about ME/CFS. It’s hilarious watching my mind come up with an explanatory phrase for the common word I was trying to use. Like saying “I can’t find my… Clothes for my feet. The foot gloves! I need my feet gloves.” (Socks. I meant socks.) It can be frustrating when trying to communicate, but it’s usually a sign that I’ve over exerted myself.

    1. Haha, yes, that’s true – mostly it frustrates me at work when I’m with people who don’t know my brain is a bit of a rusty sieve, but on the whole it’s manageable, and I guess everyone knows what feet gloves are 🙂

  6. Hi Jenny I am a fellow Mancunian with CFS/ME and even though I was diagnosed many years ago I have received virtually zero input from the Health system in all this time so I can totally identify with your story.I saw too many of my ME friends actually get worse as a result of Graded Exercise so I refused to go that route. My CBT therapist said I was “too ill” to benefit from his help!Fortunately I’m used to taking a positive view of life and getting on with things 🙂

    1. I’m glad you have a positive view, Valerie! That counts for so much! Hopefully the tide will turn with the NHS treatment of CFS.

  7. Thank you for writing so honestly and openly. I have just found your blog and instantly recognise myself in the symptoms you describe. I will read on and take solace that although there are others who have much more pain than I, my symptoms are very real.

  8. This could have been written by me! There is so much here that I identify with. Thank you for writing so clearly and honestly. We all get it and understand if we’re living with it. It’s just so difficult when it feels that no one else appears to understand. I’m feeling that I work so hard to keep going (on that 20% battery) that everyone thinks I’m fine. Inside I’m screaming (or would be if I had the energy!)

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