Chronic Fatigue Syndrome & ME

Hi, my name is hollerloud. I'm here because #MightyTogether #Fibromyalgia #Migraine #Depression #AutonomicDysfunction #ME #CFS #ChronicFatigueSyndromeampME

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

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

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 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

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.