|ME/CFS is a severe complex and acquired neurological disorder that has many symptoms – mainly relating to the dysfunction of the brain, gastro-intestinal, immune, endocrine, and cardiac systems. These symptoms include severe debilitating fatigue, impaired cognition, sensory disturbances, muscle weakness and shaking, inability to cope with noise, movement, and/or light, dizziness, nausea, heart palpitations, stomach trouble, food sensitivities, problems with temperature control and chronic widespread joint and muscle pain. It is not known what causes ME/CFS, and there is no cure. Treatment is based on alleviating symptoms. I was first diagnosed with ME/CFS the age of 11. |
Fibromyalgia is an illness that causes chronic widespread joint and muscle pain in the absence of swelling/redness/any visible cause. Other symptoms of Fibromyalgia include nerve pain, morning stiffness, numbness and tingling, cognitive dysfunction, fatigue, headaches and sleep disturbances. Some research suggests that the onset of fibromyalgia can follow a period of stress, although, the exact cause is unknown. I am considered to have secondary fibromyalgia – possibly brought on by years of living with ME/CFS and Ehlers-Danlos Syndrome. There is no known cure for fibromyalgia, and treatment is based on alleviating symptoms.
EDS is a genetic condition that affects connective tissue. People with EDS have problems with skin, muscles, ligaments, organs, blood vessels, and teeth. Symptoms of EDS include joint hypermobility (including frequent full or partial dislocations), early onset chronic disabling pain, fatigue, soft velvety skin that bruises easily, and tissue fragility.
I started dislocating joints as a child, but was not diagnosed as having EDS until I was in my 20s. I have hypermobility type EDS (on the very severe end of the scale) with some skin involvement, and I dislocate multiple joints per day (so far my fingers, thumbs, hands, wrists, elbows, shoulders, ribs, spine, jaw, hips, knees, ankles, feet, and toes are affected. My dislocation-free-days record is 3 and a half days – held since January 1-3 2012. The most dislocations I have had in a single day is 23.
Years of repeated joint dislocations have led to osteoarthritis in my left thumb, right knee, right foot, and both hips (so far, as of age 25 – at my last full bone scan). I use crutches, a wheelchair or my electric mobility scooter to get around, and I have to wear lots of tapes, braces and splints to try to keep my joints in place.
EDS is life-long and has no cure. Treatment is based on alleviating symptoms and preventing further damage to joints by strapping, bracing, and strengthening surrounding muscle. I have a 50% chance of passing it on to a child if I have one.
I have a team of medical and physiological specialists looking after me. I take lots of medications, and have frequent injections for joint and muscle pain, nerve pain, fibro stiffness, nausea, fatigue and various other things, and I visit my doctor weekly-monthly – depending on how I am going. At the moment, I am going quite well - I am no longer mostly bedbound, I can read and write again, I can hold cutlery and chew, and I can do arty crafty things and use my laptop. I can also get out of the house an average of once a fortnight for a few hours. I still have relapses and bad patches of fatigue, pain and other symptoms, but with my new medications, I am coping much better!
If you would like to read more about ME/CFS, fibromyalgia and/or EDS, see my Links section on the right.