Marly Silverman of P.A.N.D.O.R.A. encourages sufferers of fibromyalgia (FM) and Chronic Fatigue Syndrome (ME/CFS) to thrive. P.A.N.D.O.R.A. stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy. The name is quite a mouthful but then so is the challenge of living with FM and ME/CFS.
Marly's life started to change in 1997 after an anaphylactic reaction from a beesting. Then she contracted an infection that wouldn't go away. After she was in a car accident, she could not seem to regain her health.
Her experience with Chronic Fatigue Syndrome and fibromyalgia had begun.
"Perhaps one of the biggest obstacles for FM/ME/CFS patients is learning to cope with the startling contrast of their new day-to-day lives. Patients suffering from these illnesses are often overachievers used to leading busy, fulfilling lives - making their newfound disabling limitations more than a little distressing. 'What happens is Fibromyalgia and ME/CFS patients pretty much have to reinvent themselves,' Marly says. 'People need to find happiness and joy throughout their daily routine and the years ahead. I think that really makes a big difference.' ”
http://www.prohealth.com/library/showarticle.cfm?libid=13244
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I find that my patients with fibromyalgia are Type A's who when they do feel good, routinely over do it. Since fibromyalgia comes on from too much stress and a bankrupted stress coping savings account, those with the illness can't handle stress-they have no tolerance or resistance to stress and this causes flare-ups.
July 27, 2010 - 8:42amThis Comment
It took me ten years to finally admit I should not do too much nor push myself even if I feel better. I then experienced two years where I felt at peace with myself and accepting of where I was. I then attempted working just 10-20 hrs a week. I even improved a little in movement after physio. However I fully relapsed after 6 months back to heaviness and bedridden unable to care for myself. My children looked after me. I am not bedridden now 3 yrs after that lesson. But alot of hope is sapped from me. I am only 48 but eighty year olds often have more ability or about the same ability as me. I'm trying to write, I love the computer. So glad there is something. Wish I could organize myself some healthy meals. That is a bit spasmodic. So... 15 yrs and what have we done??
July 26, 2010 - 5:27pmThis Comment