Chronic Fatigue

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Chronic Fatigue
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    I’m new here!

    Hi, my name is Weluvmomma. I've been diagnosed with MCAS back in January, after a yr of labs and back n forth trips to my allergist office. however I suffer with chronic fatigue and chronic pain throughout the day. and a handful of antihistamines daily this is just insane. for 18 yrs I suffered from CHRONIC hives that were a head to toe. still waiting to hear from a GI specialist as I have more GI issues then I’d care to admit. most recently my doctor put me on cromolyn(before meals) but who can remember that before eating. food allergies are short, corn(this is in EVERYTHING even otc meds, I have to have my allerga compounded just cuz of corn byproducts), raspberries,kidney beans, hazelnut/ filbert, and oysters. the rest is a fork ton of environmental allergies. I live in the PNW we are the evergreen state for a reason and I’m allergic to most of the trees here . anyone else?

    #MightyTogether #Depression #Anxiety #ADHD

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    #liftmeup #Anxiety #Depression #Fibromyalgia #ChronicFatigue #HypothyroidismUnderactiveThyroidDisease #Grief

    I have had mostly good days in this month of May, when my depression was trying to take control of me I managed to do the the basískt ( eat, drink, meds, talking to people through the phone/Facebook. Next month, June, there are many anniversaries both connected with joy and sadness. The big

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    Nervous #EhlersDanlosSyndrome #ChronicFatigue #ChronicPain #AutonomicDysfunction #Depression #Wheelchair #Subluxation #DisabilityTalk

    Hi Mighties,

    It is 2 am and I am awake and nervous.

    Today I have an apointment with my immunologist to find out what kind of inflammatory syndrom I have.

    And I get advise about wheelchairs in a mobility aid shop. Guess I need a light chair, and just want to hire(or rent) it to try out whether it is good for me.

    My hEDS got much worse within some months. Now I am once again back from hospital cause of a seizure, but I also got a real bad flare. I am just able to get around with bandages and crutches. So I am fed up. I decided it is time for my first wheelchair.

    I feel scared But. I got so much inputs from other zebras here and on youtube and from wheelchairusers which are friends or collegues that I feel strong and am convinced I can go for it.

    My next aim: going to the zoo by wheelchair to sketch zebras 🦓🦓

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    Looking for good movies

    I am in an EDS flare, so quite housebound.
    I would like to watch a good movie.
    What is your favourite movie? # Eds #POTS #ChronicFatigue #Rare disease #MedicalZebra

    14 reactions 7 comments

    What do you think?

    I have CFS and POTS, invisible illnesses, but I know that so many more chronic illnesses/disabilities are visible (ostomy bags, limb differences, feeding tubes etc. I love to crochet and sometimes sell what I make.

    With that in mind, if I were to sell say stuffed animals with these differences or in awareness colours, would it be ethical to do so, and do you think anyone would want to buy them?

    #Art #MyalgicEncephalomyelitis #ChronicFatigue #PosturalOrthostaticTachycardiaSyndrome #chronicallychillteens

    6 reactions 2 comments
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    I started a blog!

    Not sure if I can post this here or not but a few months ago I started a chronic illness blog. I only have a couple of posts up so far because I find it so difficult to write atm. But I’d love it if you guys could support me. My twitter is @chronicallybecc and my blog is #ChronicIllness #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue

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    Truths Are Blurted Out Which Health Conceals

    I think there are few writers who have tackled chronic illness with the finesse equal to Virginia Woolf’s “On Being Ill” essay, and our community is so much better for it 🤍

    Somehow she manages to say so much in the few lines within this quote. Illness is indeed a part of every person’s human experience. Yet sadly very few able bodied souls seem capable of remembering their worst moments of having to soldier on whilst sick, and allowing this to inform their sense of empathy when it comes to those of us who have been soldiering on for years, if not decades.

    Our battle with chronic illness, fatigue, and pain, acutely enhances our perceptions. You cannot be unchanged by long term illness. We alter the courses of our lives, we alter how we face the day, and inevitably many of us—willingly or not—alter our relationships. Many things simply become unsustainable, and these alterations irrecoverably change us.

    And, whether it is topics of conversation that previously you would have considered taboo, or our falling standards of vanity, self consciousness too is inevitably eroded and reduced. Such that support group chats about strange bowel movements become not only common, but at times become quite detailed. And nobody minds, because we’re all stuck in the same metaphorical boat of having to self advocate, and self research.

    Loss of vanity creeps in slowly. One of the first things I remember doing was growing my hair out so I could braid it and not have to style it anymore. Those of us with #MultipleChemicalSensitivity find that hair dyes and nail polishes become too irritating. I switched to natural versions, but as my health worsened, eventually I lost the will to engage in these little vanities altogether.

    At some point your hygiene standards become less of a priority, and skipping baths or showers seems a prudent way of saving spoons. Wet wipes become good substitutes and in winter, you’re just about prepared to be sewn into your clothing for the season as they used to do in the Middle Ages. And with the worst of health things like makeup, regular haircuts, high heels, jewellery and such, become but a distant memory.

    Reduced capacity to thrive brings out all sorts of confessions. Which to their credit, our partners most often find themselves unofficially ordained, and on the other side of the curtain. Regrets, memories, anger, and hurt. When you have nothing but time, and lack the energy to participate in life, it all comes tumbling out in the wash.

    Most recently I found myself confessing to my husband that occasionally I can’t help but wonder if hubris is keeping me alive, and whether he might be better off without me. Not to say that I have any intention to laden my pockets, and wade into the River Virginia. My mind however does spend an awful amount of time dwelling next to it’s riverbanks. My mind’s eye fixed on the current, trying to decode what it all means, and where exactly I stand in the great equation called life.

    Fully cognisant that there are millions of years behind our evolution, many more millennia yet to come, and in a cosmos made up of infinite planets and possibilities. Such that one day none of it will matter at all. All evidence of my existence will eventually disappear. And it is this knowledge that forces me back to the one truth that I have come to know; all that really matters is the here, and the now.

    As Virginia Woolf so aptly concludes, “truths are blurted out which health conceals”.

    #MyCondition #ChronicIllness #MightyBookClub #Spoonie #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #ChronicPain #WritingThroughIt

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    Is “The Drowsy Warrior” a Good Superhero Name?

    First, I have to point out the upsetting thing about this picture. It’s from a few years ago when I had all my hair. Second point; ageism. I just went to a dermatologist to discuss my hair loss, and even though when she asked me to estimate how much of my hair I’ve lost (about 40%), she told me that I don’t like I’ve lost that much hair to her. Hair loss is a matter of perspective though. She was I assume in her late 60s and had what looked like naturally fine hair. I’ve lost so much of my own hair, that I can no longer put it up into a ponytail without my hairband falling out. Whether my hair loss is overtly obvious to others or not is immaterial—it’s very obvious to me, the person suffering from painful patches on my scalp that itch and burn, with no confirmed signs of hair regrowth since I fell gravely ill last summer.

    She did offer some advice which I’ve started to follow, and suggested that if I keep at it my hair should grow back within 2 years which is a positive ✔️

    I guess I should feel happier, but the hair loss isn’t the only symptom I’ve suffered since I was hospitalised and misdiagnosed as being hysterical, rather than them correctly identifying that I was hyperthyroid, which led to my hair to continue falling out far longer than was necessary. I was also so thyroid toxic that I needed to invest in a wheelchair, but this was again, dismissed as me “wanting attention.” My ongoing experience is that unless there’s an easy fix to your problems, doctors for the most part, are not interested in helping. They want easy fix patients, not the complex cases that tax their time and energy. Even a sympathetic doctor told me recently about my painful skin burning sensations “that’s something I’ve never come across in my years of practice.”

    Case dismissed, nothing more to see here, kindly move along.

    Medical negligence for people with chronic illnesses, disabilities, and for the elderly, is I think one of the great disasters of our time. We are routinely robbed of our dignity, and no one wants to hear about our plight. Not when there are far more pressing matters to give their attention to, like someone’s mistaken use of the wrong pronoun, or watching TikTok videos of people committing crimes and posting them online for the world to consume as internet fodder.

    I cannot think of a reasonable way to wrap up this post, other than to ask that you send some positive healing hair follicles vibes my way, and to send virtual spoons to all you other Drowsy Warriors reading this 🩶

    #ChronicFatigue #MyalgicEncephalomyelitis #HairLoss #Hyperthyroidism #MyCondition #ChronicIllness

    17 reactions 11 comments

    They Don't Understand

    One thing about having a chronic illness that I've slowly learned to accept is that no one will understand unless they too have one. And that's alright.

    Take erythromelalgia. No one can understand what it's like for your body to burn from the inside out. Or chronic fatigue. How can anyone possibly understand what it's like to feel like your life is being drained out of you and not amount of sleep or rest will possibly help?

    It has taken time, but I am slowly learning to accept the reality that no one will truly understand. They can try, and they can learn to ask questions so they can have a level of understanding. The best I can hope for is compassion. And that's where people who don't have chronic illnesses can improve.

    To everyone that I've gotten angry at for not understanding, I apologize. Of course you don't understand. How could you?

    Most importantly, thank you to everyone who has tried to understand.

    Thank you to everyone who has shown some understanding, especially family members who are by our side day and night in our hardest times. And thank you to coworkers, neighbors, and even random strangers who have demonstrated compassion. I'm grateful for you, for all you do, and for doing everything to can to appreciate what I go through day after day.

    #Erythromelalgia #ChronicIllness #ChronicPain #ChronicFatigueSyndrome #Relationships #ChronicFatigue #CheerMeOn #MightyTogether #PeripheralNeuropathy #MyCondition #RareDisease

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    Which area of your life does your CFS impact the most?

    From employment to body image, dating to maintaining personal relationships, we know chronic fatigue syndrome symptoms can affect life in many different ways (both good and bad).

    What areas of your life has been most negatively or positively impacted by your chronic fatigue syndrome?

    If you have the energy today, share your experience with us in the comments below. ⬇️

    #ChronicPain #ChronicIllness #COVID19 #ChronicFatigueSyndrome #PosturalOrthostaticTachycardiaSyndrome #AutoimmuneDisease #Spoonie #Fibromyalgia #IrritableBowelSyndromeIBS #Migraine #Depression

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