post-exertional malaise

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    Rest Can Be Triggering

    If you have spent a lot of time in hospitals or institutions or forced to lie in bed, rest can be very triggering. When you spend long periods of your life forced not to do anything, rest can feel like a punishment. Medical and psychiatric trauma are real.

    At this time of year, we can get a lot of messaging about rest and productivity that lack nuance. So this post is a shoutout to all of our sick, crip, mad, and disabled community out there who struggle with finding Crip space for rest. You are valid too.

    ID: Rest can be triggering. Background photo of mountains against the sky on a full moon night.

    #Disabled #bedbound #Bedrest #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Spoonie #SpoonieProblems #SpoonTheory #Holidays #PostexertionalMalaise

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    How to deal with PEM “tired and wired”?

    I have dysautonomia and pretty bad PEM sometimes. I don’t feel the chronic fatigue however my energy span runs out quicker and if I overdo it the crash happens. Because of my dysautonomia I am prone to tachycardia and palpitations. I would describe PEM as tired and wired instead of just tired/drowsy. I tried using ubiquinol or coenzyme q10 but they all caused palpitations and jitterness even after one dosr which was frustrating. I am taking ivabradine and as needed metoprolol and occasional xanax.
    Any suggestions on how I can further cope with this and any supplements/lifestyle changes that have helped? #ChronicFatigueSyndromeampME #PostexertionalMalaise #PEM #Dysautonomia #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome


    Do you tend to ...

    Get anxious?
    Get afraid of pain, fatigue, brain fog, headache/migraine, etc?
    Choose the easiest route (unhealthiest)?

    Because of living w/ #Fibromyalgia #Dysautonomia #MyalgicEncephalomyelitis #ChronicPain #ChronicFatigue #PostexertionalMalaise


    have you tried to get student loan forgiveness without SSA or SSDI?

    Please say if it was or wasn’t successful first.
    I am sure I’m not the only person who considered it. I haven’t applied for SSA or SSDI because it wouldn’t be worth it.
    I had to do medical withdrawals (fibromyalgia-related, PTSD, & other medical issues) back when I was trying to complete my degree. I was unable to. On top of all the medical stuff I supposedly didn’t have learning disabilities until I was an adult (or the symptoms weren’t severe enough until then) so I didn’t have the coping mechanisms that are taught when younger. If you didn’t know, it is ridiculously expensive to get the testing for learning disabilities. Since I was an adult, I had to find a place by myself that did testing (though neither medical or psychiatric insurances help pay for it) and somehow be able to pay thousands of dollars to be tested. I was unable to get accommodations for the symptoms that came along with my fibromyalgia.
    If you are lucky enough not to know this, you still owe money when you have to take medical or compassionate withdrawals.

    I feel like my student debt is holding me back. It’s already hard enough financially with medical issues.... I am trying to get healthier & be able to do more but financially it’s so rough. I didn’t complete my degree so that limits job availability. Plus I hope to find a flexible schedule remote job from home. I can’t handle the driving. All income-driven repayment is doing is increasing how much I owe.

    Please share your stories...even if it’s just something you have been considering. I just ask you first say if you tried whether it was successful... or if you are in the process or thinking about it.

    #Dysautonomia #Complex Post Traumatic Stress #PTSD #PostexertionalMalaise #Arrhythmia #PosturalOrthostaticTachycardiaSyndrome #InappropriateSinusTachycardia #ChronicIllness #MyalgicEncephalomyelitis #ChronicPain #ChronicHeadaches #ChronicMigraines #Migraine #Fibromyalgia #avnrt #avnoderentrenttachycardia #Tachycardia #SinusTachycardia #MyofascialPainSyndrome #LearningDisabilities


    Have you tried a weighted blanket? Do you think it helps w/ your PEM or daily soreness?

    have you tried a weight blanket? do you notice it helps post-exertional malaise symptoms? or just daily issues?

    #PostexertionalMalaise #Postexercisemalaise #Fibromyalgia #MyalgicEncephalomyelitis #Dysautonomia


    How would you describe what living w/ #Fibromyalgia is like to somebody?

    It’s difficult trying to explain what living with fibromyalgia is like. Family and friends tend to not understand.
    I am interested in anybody who has had success.

    How can we explain to others what it can be like?... especially what it’s like with a flare-up, #PostexertionalMalaise , or etc.

    A long time ago I remember seeing a way somebody explained it using an example of what it would feel like for somebody not ill to do intense exercising while having the flu and other stuff.

    Do you have to break it down to diff symptoms that come w/ fibro? Fatigue, pain, sensitivity, fibro fog, etc? 🤔


    Has anybody w/ #Fibromyalgia tried the Apple Watch 4?

    I tried the first Apple Watch when it came out but it felt like my skin was burning. I don’t know it fit was the lights?
    I want to track my heart rate (ECG) for my #InappropriateSinusTachycardia #Dysautonomia ... see if I can prevent my #PostexertionalMalaise as much as possible.


    Does anyone else use therapeutic horseback riding to help with Fibromyalgia and CFS/ME? #Fibromyalgia#CFSME #PostexertionalMalaise #ChronicIllness

    In what ways do you notice it helps?