Chronic Fatigue Syndrome & ME

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Chronic Fatigue Syndrome & ME
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Fed up and lonely

#ChronicIllnessEDS #SpinaBifidaAwarenessMonth #ChronicFatigueSyndromeampME #FunctionalNeurologicalDisorder #Endometriosis #SleepApnea
My husband is frustrated, annoyed and always mad at me at the moment. I have the above conditions and juggle 3 businesses. I’ve been through a high pain flare recently so yes I’m on the sofa watching TV to recover. My husband does work long hours, he’s also self employed, drives many hours and is having a rough time at work.
I feel like because he’s having a rough time he’s turned into a bully at home, I try to stand up for myself but it’s really tough on me emotionally. My mum and dad are both narcissistic I feel that I have no one to turn to. There’s only clients in my life, no true friends to turn to. That’s because when I’m not working I’m recovering, friends aren’t interested.
All I want to do is run away and hide to get some peace. I’d stay in my Horsebox but I need electricity for my Cpap machine & fan that I have to sleep with. I’ve no spare cash for a hotel, I just don’t know what to do.
I thought maybe posting on here might help

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FLARES x 3 #multiple illnesses

I am not sure if this is where I should post, but I could really really use some advice on flares. I have been "flaring " going on 3 weeks. I don't know which illness is flaring? Fibromyalgia, Chronic Pain Syndrome, ME/CFS, Primary Sjögren's syndrome, osteoarthritis, refractory migraines, Lupus and RA are being tested. I have been in this pain circus for 17 years....
BUT never had everything 🔥🔥🔥 all at once. Please, if you have time and energy to share, tell me what to do to make it tolerable. I am sinking into pain quicksand, and I hurt everywhere. I appreciate you taking time to reply, if you can.
#Fibromyalgia #ChronicFatigueSyndromeampME #intractable chronic migraine #PrimarySjogrensyndrome #Osteoarthritis #Osteoporosis #Toomanytolist

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Joy Jar

I’m new to chronic pain (long Covid ME/CFS). I have a joy jar that needs redoing. It contains color coded popsicle sticks with ideas for things I can do to enrich creative, physical, spiritual, social, and intellectual parts of my life. Many of my old sticks have things I just can’t do anymore. What things have you found that are gentle on struggling bodies (and, let’s face it, hearts and minds, too) that enrich your life? #ChronicFatigueSyndromeampME #ideas #helpneeded #newspoonie

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Hi guys its been a while!

My auntie shared this with me , I really liked to so I thought I'd share with the Mighty #Vasculitis #Anxiety #ChronicFatigueSyndromeampME #PsoriaticArthritis #Depression

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

What are your thoughts on using thc (marijuana) for the help in treating mental/chronic/autoimmune/pain, illnesses? I’m talking about taking low dose amounts, not getting Snoop Dogg high! What do you think? #Depression #Anxiety #CPTSD #Trauma #eattingdissorders #LGBTQIA #Fibromyalgia #ChronicFatigueSyndromeampME #ChronicIllnessEDS #ADHD #ChronicPain

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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



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


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


#Positivity #Selflove #DBT #BorderlinePersonalityDisorder #Fatigue #ChronicFatigueSyndromeampME #MentalHealth #Health

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.