Myalgic Encephalomyelitis, M.E.
CFS/CFIDS, Chronic Fatigue Immune (Inflammation) Dysfunction Syndrome.
TedTalk, Jennifer Brea, Unrest. M.E. “What Happens When You Have A Disease Doctors Can’t Diagnose?” A Quiet Revolution.
Research & Collaborate: www.HealthRising.Org
“The Most Prevalent Disease That You’ve Never Heard Of.” Solve ME/CFS Initiative.
American ME and CFS Syndrome Society. AMMES.Org
Evaluating “subtle” Memory Issues, Asking New Diagnostic Questions is one way to start turning symptoms into data, diagnosis. For example, Not being able to Multi-Task, especially the multi tasking you used to do easily, needing to completely focus on one thing at a time. Also, Not being able to Process New Complex Information, learn a language, acquire a new skill. Memory Issues are Not Normal at Any Age.
M.E./CFS “flares” can feel just like having a TBI, Traumatic Brain Injury, or M.S., Multiple Sclerosis (& for some, plus feeling like you ran marathon from “off the couch”…).
Once Brain MicroGlial Cytokines, “Neuro-Degenerative” & “Neuro-Protective” are Activated, they Stay Activated in a Surveillance State, & are Re-Activated.
(Cytokines) Immune System Inflammation &/or Autoimmune Pathways are being triggered in the CNS, Central Nervous System. “The ‘flu’ that never goes away.”
MCS. Multiple Chemical Sensitivity. It’s Real.
Meet MCAS, An Allergic Immune Disorder Linked to Lyme Disease. Inflammation!
Find an Immunologist or Physician that is knowledgable, or intellectually curious about M.E., Chronic Fatigue Syndrome, Neuro-Inflammation. Immune Dysfunction.
Medical Gaslighting. It’s an unfortunate and true fact, it happens. A lot. Your Family Practice or Emergency Room Physician, Psychiatrist or Psychologist may be well meaning, or not, or just simply frustrated by your multiple and unpredictable symptoms and make you DOUBT what you are experiencing, or worse, try to label you with a mental disorder to be able to at least prescribe something or farm you out to a Specialist.
How we feel is the only truth we have.
Don’t expect your general practitioner doctor to have the time to hear your story and figure it out for you. This is a tough journey, but getting a proper diagnosis, sometimes of Myalgic Encephalomyelitis (mild to severe), aka Chronic Fatigue Syndrome, is the first step. There are amazing physicians and researchers fighting for YOU. You are not alone.
Take care of your body as much as possible, physical de-conditioning makes a sluggish vascular system worse. I know…pain, headaches, crushing fatigue, and “I can’t think myself out of a paper bag right now”, but stabilizing Physical Therapy micro-exercises & stretches, especially for your neck & back can really help, and may treat some stagnant lymph & pain issues by getting you moving & into alignment.
Got Joint Dysfunction? “Ehlers-Danlos Syndrome isn’t rare – it’s just rarely diagnosed”
It takes a village… Get Informed. Get Empowered. Get Diagnosed.
Some treatments, medications, and supplements work and some don’t. It’s complicated, but you can get informed about your unique genetics, circumstances, and symptoms (& accept that some things you may never know).
“The Power of Community to create health is far greater than any physician, clinic or hospital.” Dr. Mark Hyman, Functional Medicine.
Hacking the Control Room. Aka, Coping:
Anxiety, Depression, & Pain are useful Feedback Tools. Your Body is trying to tell your Mind that something needs tending to. You are not Crazy or Lazy, or Broken.
Balance Thinking, “figuring it out”, with a Quiet Mind. “The Power of Now”. Retrain your Brain.
Mourn your losses, they’re real. Then figure out what you can do. Cry as long & often as you need, it’s cleansing and reduces stress. No one owes us anything in this life. Forgive. Keep Going. Rest. You know what’s happening, you have (brain) inflammation. You always recover, even if just a little bit. “Choose not to be traumatized.”
If you have moments of a clear brain and feeling good, you can have many more.
Breathe. Hydrate. BE in Nature.
Laugh. “Friendship is a Sheltering Tree.”