This Is What Chronic Fatigue Feels Like

This Is What Chronic Fatigue Feels Like
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Dachshunds & Duvets – a column by Jessie Madrigal-Fletcher

Chronic fatigue is a rarely recognized aspect of endometriosis, yet it’s a common symptom. Very few doctors diagnose it or suggest a line of treatment.

I once went to a nutritionist because my IBS-like symptoms were acting up. (Then again, when are IBS symptoms doing anything other than acting up?) I mentioned how I took certain natural supplements to help with my chronic fatigue. Puzzled, she stopped taking notes and asked, “Have you been diagnosed with chronic fatigue?”

This surprised me since she knows I have endometriosis. My brain quickly shuffled through all my doctor’s visits and medical documents, searching for some sort of official proof that would confirm my chronic fatigue. Something that would prove I wasn’t the kind of person to self-diagnose after a glass of wine and 30 minutes on Google. I replied with a not-very-confident, “Well, I have endometriosis and chronic fatigue is one of its main symptoms.” She nodded, yet didn’t write anything down.

I became very annoyed with myself. The exchange with the nutritionist had made me doubt everything I knew about my disease. To me, chronic fatigue is something very real. I experience it almost daily; its symptoms are physical and severely life-altering. It hits me when I have a fun day ahead or when I am ready to do some exercise with my trainers on. It happens when I have all the motivation in the world to do my job. It’s more than feeling tired. It’s not lack of motivation or depression. It kicks me in the butt in the happiest of times. 

So, what does chronic fatigue feel like?

Sometimes, chronic fatigue feels like being covered in tar from head to toe. Limbs are heavy and there is a weight that is impossible to shift, even when doing the most menial of activities.

It may feel as if someone is stabbing my legs with a small knife. Or, it can be a strange numbing sensation, like my leg is about to crack open.

Most days it feels like staring at the sun or walking out into bright daylight, except this happens while indoors. I can spend the day unable to open my eyes completely. 

Occasionally, it’s close to that sweet spot between being drunk and hungover, except no cocktail happy hour preceded it. 

On most days, it’s like climbing up a steep hill carrying a baby elephant. I could go on … 

Sleeping sausage dog with no chronic fatigue
Jarvis efficiently recharges his batteries like I wish I could. (Photo by Jessie Madrigal)

Most doctors seem to overlook fatigue when treating women with endometriosis. As a patient, all I can do is stop fighting the fatigue and lie down, yet my body refuses to recharge, no matter how much I sleep. What I could really do with is a solution or a line of treatment. Maybe just some advice on what steps I can take to carry on with my life. Last week, I lost three days of work because I could barely do anything other than remain horizontal and close my eyes. 

Chronic fatigue is life-altering and needs specific attention. Having a health professional perform a subtle — yet quite noticeable — eye roll or barely acknowledge us when we mention this very real symptom should be a thing of the past.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease
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Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease

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14 comments

  1. Meg says:

    I can relate to your article. I’ve had days were I’ve fallen asleep while sitting upright, dog on my lap, and in the middle of conversation. Afternoon naps that last 1-3 hours are not uncommon — and these are after sleeping 10-12 hours at night! Good, solid sleep too. No reason to still feel tired.

    Anyways, I’ve called these collection of symptoms “chronic fatigue” for a couple of years now. Some months back I was writing a blog post, went to double check my facts, and discovered that these symptoms don’t qualify as “chronic fatigue.” Nuance of words, really, but chronic fatigue syndrome has altered the medical definition of “chronic fatigue.” Several days of research later, I fell upon the term “hypersomnia, due to medical condition” (in my case, endometriosis). It’s considered a sleep disorder, although it’s really just a collection of symptoms with no understood cause. I could put a check mark next to every symptom, as could my best friend who also has endometriosis. Might check it out?

    • amanda says:

      Thank you so much for this! So close to what I experience every day. May I ask you if you experience pain with endometriosis? I have endometriosis without pain — which I know makes me extraordinarily fortunate– but still experience the debilitating exhaustion. Wondering how many others are like this.

      • To me, Amanda, you are a unicorn! I experience pain, all of the pain 🙂 But yes, endometriosis comes in all sorts of forms, and sometimes it doesn’t even correlate with the amount of adhesions one has. Thanks so much for reading, and sharing your experience. Chronic fatigue sucks, it’s not easy to live with, at all. Sending you a massive hug

      • Freya says:

        I experience some pain but for me it’s mainly exhaustion and fatigue too! I had a lot more pain before altering my diet but the exhaustion seems to be getting worse. I now work from home on a computer and only 2 days a week (from a 6 day a week physical job 2 years ago!) and there are still days I try to work and even thinking or just looking at a computer screen is too much.

        • Thanks for reading my column and taking the time to share your own experience. I feel you! Like you, I work from home too, and sometimes even that, with zero energy, can be quite daunting. It’s like my body switches off, or there are no batteries left. Do go easy on yourself, and if your body asks for rest, give yourself permission to take things slow 🙂

      • Jess says:

        This article and these comments are wonderfully affirming. Many years ago when I was diagnosed with endometriosis, my doctor prescribed low dose progesterone. It did wonders for controlling my pain, to the point where I forget that I even have endometriosis (unless for whatever reason I forget to take it, then boom pain is back!). The problem is I still have awful fatigue. It often comes in flare-ups, just like the usual pattern of endometriosis, just sans pain. I feel very lucky, but the fatigue issue can be maddening, especially at work. It’s good to hear others have this particular combo so I know I’m not going crazy.

  2. Morgan says:

    Wow I thought I’ve been going crazy because I often forget fatigue is a symptom of endo. Because, well I basically have all of the symptoms on a bad level. The last week I have been fighting fatigue so much it has almost taken over the other symptoms, the biggest for me that usually triumphs over the others is crAmping. So this last week I have been literally falling asleep during meetings, like can’t keep my eyes open after having a HUGE matcha or even a energy drink & sleeping 8-10 hours, only being up for two hours & Then basically becoming lethargic. Literally like my brain turns off & the lights go off!!! Just started googling some stuff & found this. So thank you, it shows me I am not alone.

  3. lani sulzbach says:

    I also have endometriosis with severe chronic fatigue. The only Hope I have for being able to focus on any task any day of the week, or get out of bed is starting Adderall. Ideally, I would like to have a more passive approach but nothing, absolutely nothing else helps. I was an RN, Vice President of a multiple Operations women’s health services three years ago. Now I cannot promise I am able to do part time at home work! Very sad and debilitating disease that has had a psychiatric, social, and familial effect on my life. You are not alone!

  4. Jenny says:

    Hi Jesse, thank you for your post, I was diagnosed with severe endometriosis two years ago, I experienced some fatigue, but since March this year has gone really bad.
    You mentioned some supplements you take, what can you recommend to help? Thank you!

    • Hi Jenny, I’d recommend talking to your doctor, or a nutritionist first. I was advised to try taurine, but also to uptake my intake of certain vitamins and omega 3s. I didn’t feel much with regards to the taurine, but yes to the right vitamins and omegas. Like I said, it is worth talking to a doctor, because they can guide you regarding vitamins so you don’t end up taking the ones you don’t need, or overdoing it on others, especially if you have any endo-related digestive issues. I hope this helps. Thanks so much for reading.

  5. Sylvia says:

    Hi Jessie,

    This article is something of a lifesaver for me as it has let me know that I not alone. I have had endo for years and at one point the pain was completely debilitating. The pain is much better now, to the point where I could probably hold down a job if it wasn’t for this all consuming fatigue! Taking a shower is impossible most days and I can’t walk very far before needing to sit down (and take a recovery nap later). It almost, almost, makes me nostalgic for the pain.

    • I so feel you… while my pain levels have lowered, my chronic fatigue just seems to not want to go anywhere. It is so debilitating sometimes. Thanks so much for reading and taking the time to comment. Hang in there x

  6. Cherie Knapton says:

    I have loved with undiagnosed endometriosis for over 20 years…I thought I was losing my mind…I also have two large cysts on each ovary and a spastic pelvic floor…before I was diagnosed I thought I was depressed…I’m an A type personality and am used to functioning on a high level…the past five years have been brutal…the pain is intense and is daily but the fatigue is making life impossible. I practice yoga 5-7 days a week, trying to eat an anti-inflammatory diet and I take all kinds of supplements to help my immune system and help balance my hormones…and nothing works…I own my own business and it’s in a stressful industry and my clients are demanding…and now I can’t even turn on my laptop most days…my stress level is getting worse every day…I don’t know what else I can do…I fired my specialist as all she kept doing was sending me for ultrasounds every 6 weeks…I’m tired, overwhelmed and beginning to feel like I’m never going to be free of the pain or the fatigue…side note, I can function with the pain (grin and bear it) but the fatigue is a whole other thing 🙁

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