Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Wednesday, May 7, 2014

EDS Awarness Month: Ehlers-Danlos Syndrome and Fatigue

For me, this is how a bad fatigue morning goes with Ehlers-Danlos Syndrome.  Imagine fatigue so bad that you can barely lift your hand from the bed.  Rolling over requires more energy than you have, and getting out of bed to pee in the morning isn't possible.  So you lie there, in the weird position you woke up in, and hold your pee, waiting to have the energy to walk the few steps to the bathroom.

This is how a normal fatigue morning goes with EDS, at least for me.  Waking up in the morning you feel exhausted, like you've just ran three miles.  You sometimes have to sit in bed, gathering the energy to get to the bathroom, but other times you are able to walk there upon waking.  Some mornings you have to use a cane to walk the seven steps to the bathroom from your bed.  You go sit on the bed afterwards, waiting to gather enough energy to get dressed.  Once you get dressed, you walk to the living room and sit on the couch for awhile.  At this point most of the time you are too exhausted to make your own breakfast, and your husband has to make it for you, even if it's only milk and cereal.

EDS causes severe fatigue in most patients.  Often the fatigue is severe enough to be disabling.  Some EDSers are in wheelchairs not because of dislocations or pain, but because they are too fatigued and dizzy to walk on their own.  Some EDSers are bed bound from fatigue.

If you have EDS and fatigue, it may seem very frustrating to try to get things done.  I hate it that between the pain and fatigue I am unable to keep my house clean.  That really bothers and frustrates me more than anything.  What is your biggest frustration when it comes to fatigue caused by Ehlers-Danlos Syndrome?

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