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Chronic Fatigue Syndrome And Fibromyalgia: P.A.N.D.O.R.A.'s Marly Silverman

By HERWriter
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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.' ”


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EmpowHER Guest

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 - 8:42am
EmpowHER Guest

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 - 5:27pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.