Chronic Fatigue Syndrome & ME

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Chronic Fatigue Syndrome & ME
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    Community Voices

    I’d really appreciate your feedback and opinions on this topic. Gimme the good, the bad, and the ugly!

    <p>I’d really appreciate your feedback and opinions on this topic. Gimme the good, the bad, and the ugly!</p>
    70 people are talking about this
    Community Voices

    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

    3 people are talking about this
    Community Voices


    So today I went to my gastroenterologist and found out I need further evaluation to rule out conditions before settling on ibs and treating that with antispasmodics they said I definitely am a zebra with the complexity of issues autoimmune cardiac mental health and so forth And though I said it in jest it's actually covering up insecurities and paranoia that I'm a fraud and my illnesses are not valid despite true symptoms and extensive meducstins and hospitalizations and procedure ice come to doubt myself because of doctors initially saying fibro and myalgic encephalitis don't exist as a teenager when I just wanted to feel better regardless of it's was mind or body driven but with the schizoaffective this has be become a deep seated paranoia that my doctors are out to expose me as delusional for there own laughs reality testing tells me this isn't true but feelings hard to shake the tests are producing a lot of anxiety like are they giving me placebo is this all a test I know it's just my diseased mind conjuring up these thoughts but his do you other "mighty warriors" cope and quell the obsessive tape of uncertainty playing in your head #schizoaffective #POTS #ChronicFatigueSyndromeampME #granulomaanulare #Zebra just want be back on the Oregon coast so ill try to meditate on that to get to sleeo

    3 people are talking about this
    Community Voices

    I'm dealing with a lot

    I'm dealing with a lot my brother won't let anything go he's most of the time in bad mood. I'm caregiver and taking care of my mom who's every sick but getting better. We're currently living in 1 rm hotel rm and that has seen better days. Can't get apartment until we fix the problem w previous landlord who posted unfair charges on fr previous tenant that they had. Just to practice my coding and deal w my mental health and learning disabilities while working any help or advice anyone can offer I need. #ChronicFatigueSyndromeampME #apartment #landlord #MentalHealth #Dyslexia

    4 people are talking about this
    Community Voices

    After a busy morning with the kids and a meeting with my cpn which always drains me talking about my mental health. I felt the burnout after lunch time and my partner picked up the kids all I could do was rest which I constantly beat myself up for. I ate healthy all day and am determined to carry on. I need a way of keeping my energy levels up throughout the day, I hate that when the kids get back I’m always resting. I started on the chore or tidying my daughters room when they got back but could only manage a bit. I made them dinner which is always really rewarding for me to see them sit at the table nicely together and eat a meal I have cooked without any complaining. It’s probably something to do with how my therapist says I see everything with “perfection” glasses on and everything needs to go the way I think it should with the house. I started to get really tired, stressed and agitated which easily can lead to self harm. So I used opposite action and decided to make a really healthy salad to go alongside my dinner. My partner loves to do the cooking as normally I’m dealing with the kids or having to rest about that time. But it was really rewarding and I’m hoping to keep up the healthy eating today and possibly get in the kitchen this evening. Have a very busy day ahead of me today so let’s see how today goes.

    3 people are talking about this
    Community Voices

    When You Pretend to be Part of the Furniture

    <p>When You Pretend to be Part of the Furniture</p>
    8 people are talking about this
    Community Voices

    Do I have ADHD or am I exaggerating?

    - Every big decision I ever made has been impulsive.
    - My house is a mess. If I start cleaning I am all over the place and suddenly I am hyper focusing on some irrelevant detail.
    - I have all my life not comprehended how people are able to follow those long boring conversations or meetings. Why is it only me who struggles with this. What’s wrong with these people. Let’s get on with it instead of talking it to death.
    - I can read a book, play the piano or play a video game and forget the world exists. Time passes by and I don’t notice. I am on a different planet
    - I misplace everything all the time. Find my phone is so helpful. I lose it, and other things several times a day, and I just had it in my hand..
    - If it’s not in my calendar or my list it does not exist. I never remember any appointments. Must have alarm reminders.
    - I got in trouble a lot for not paying my bills. Luckily it now goes automatic. Unless I get a new bill from a new place. Ooops.
    - I could never study in school like the others. Instead of reading I’d go straight to taking previous exams for practice. At night when everything else is quiet. Often only the day before.
    - I get up and leave a meeting if I can’t stand it. I pretend to go to the bathroom so I don’t seem rude.
    - when things go slow my body hurts out into my fingertips and toes.
    - I lose control of my feelings. But when it’s over it’s over.
    - out of sight out of mind.
    - I always do at least two things at a time.
    - I tried so many sports. I quit after my first game or performance then go on to the next.
    - i prefer being with kids. They are more action, less talk. Grown ups are so slow…

    I am a woman of 38 years old feeling like I am pretending to be an adult. I now have ME/CFS, but could I also have ADD/ADHD?

    #ADD #ADHD #ADHDInGirls #MyalgicEncephalomyelitis #ME #ChronicFatigueSyndromeampME #UndiagnosedADHD

    4 people are talking about this
    Community Voices

    Has anyone found success in healing a relationship with fatigue in the middle?

    I am working to improve my relationship with my wife. She values quality time and I have ME plus about 12 other medical comditions. She describes our relationship now as being like married to someone deployed by the military. My wife is great and supportive. I am asking advice for me not as a critique of her. Thanks for any response. I guess a second question may be what hasn’t worked?

    2 people are talking about this
    Community Voices
    Community Voices

    I am learning to accept rather than expect.

    <p>I am learning to accept rather than expect.</p>
    16 people are talking about this