About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.


Symptoms of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)/Myalgic Encephalomyelitis (ME)/Chronic Fatigue (CFS)

CFIDS/ME/CFS Symptom Checklist
From Jay Goldstein, MD, the CFIDS Association of America and from bits and pieces here and there!

I am including a combination of the CFIDS symptom list from three "sources," the first, from Dr. Jay Goldstein, because I happened to know that Dr. Goldstein is one of the "good guys."  Dr. Goldstein has done much to help our cause, not something I can say for many of the physicians "specializing" in CFIDS/CFS whom I've known personally.  I was saddened to discover that in April of 2003 Dr. Goldstein retired due to poor health. We owe Dr. Goldstein a huge debt of gratitude.  I remember a few informal and lengthy conversations that he and I had back in the heady years of the late '80's and early '90's and I was always struck by his intelligence, as well as his desire to help these "mysterious" patients find their way back to health.

Below is a huge amount of the questionnaire Dr. Goldstein would ask his new patients to fill out (found in one of his books on Chronic Fatigue Syndrome), synced with the CFIDS Association of America, as well as a few of my own gems.  (What?  I don't count???)   The percentages seen below correlate to numbers Dr. Goldstein saw in his own practice.  To complete the survey, you can rate the severity of your symptoms from 0 to 10, with zero being the least and ten being the greatest severity.  

One thing to understand about CFIDS is that while many people with very different illnesses experience some of these symptoms at one time or another, and many of them are felt constantly by those who are chronically ill with one of many different illnesses.   CFIDS patients differ, however, in that they experience most of these symptoms on a daily basis, with impacts ranging from moderate to severe for each one.  Cumulatively, the effects are for the most part absolutely devastating.  Finally, the "invisibility" of so many of the symptoms of this illness is a curse in and of itself because it makes it difficult for others to believe that there is a true illness working here, one that is fatal in too many instances, and rarely curable.

1. Fatigue (100%) - usually made worse by physical exertion, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.

2. Cognitive function problems (80%)

  • attention deficit disorder
  • inability to comprehend/retain what is read
  • inability to calculate numbers
  • memory disturbance
  • spatial disorientation
  • frequently saying the wrong word
  • impairment of speech and reasoning

3. Psychological problems (80%)
  • depression (secondary)
  • anxiety
  • personality changes, usually a worsening of a previously mild tendency
  • emotional lability (mood swings)
  • psychosis (1%

4. Other nervous system problems (100%)
  • sleep disturbance
  • headaches
  • changes in visual acuity
  • seizures
  • numb or tingling feelings (including periferal neuropathy)
  • disequilibrium
  • lightheadedness - feeling "spaced out"
  • frequent and unusual nightmares
  • difficulty moving your tongue to speak
  • ringing in ears (tinnitus)
  • paralysis
  • severe muscle weakness
  • blackouts
  • sensitivity to light, sounds and smells
  • visual disturbances, including blurring, eye pain & the need for frequent prescription changes
  • intolerance of alcohol, often from the smell of it across a room
  • alteration of taste, smell, hearing
  • dizziness and balance problems
  • non-restorative sleep
  • decreased libido
  • twitching muscles ("benign fasciculations" or myoclonus)
  • nocturia (excessive urination during the night) (50-60%)
  • stiffness

5. Recurrent flu-like illnesses (75%) - often with chronic sore throat.

6. Painful lymph nodes - especially on sides of neck and under the arms (60%).

7. Severe nasal and other allergies - often worsening of previous mild problems (40%).

8. Weight changes - usually gain (70%).

9. Muscle and joint aches/pain with tender "trigger points" or Fibromyalgia (65%).

10. Abdominal pain, constipation, diarrhea, nausea, intestinal gas - "irritable bowel syndrome" (50%).

11. Low grade fevers or feeling hot often (70%).

12. Low body temperature.

13. Night sweats (40%).

14. Heart palpitations, irregular heart beat (40%).

15. Severe premenstrual syndrome - PMS (70% of women).

16. Rash of herpes simplex or herpes zoster (shingles). (20% or more).

17. Uncomfortable or recurrent urination - pain in prostate (20%).

18. Numbness, tingling and/or burning sensations in the face or extremities; 

19. Dryness of the mouth and eyes (sicca syndrome)

20. Other symptoms:

  • rashes and "super" sensitive skin (30-40%)
  • hair loss
  • impotence
  • chest pain
  • dry eyes and mouth
  • cough
  • TMJ syndrome
  • mitral valve prolapse
  • frequent canker sores
  • cold hands and feet
  • serious rhythm disturbances of the heart
  • carpal tunnel syndrome
  • pyriformis muscle syndrome causing sciatica
  • thyroid inflammation
  • various cancers (a rare occurrence)
  • periodontal (gum) disease
  • endometriosis
  • dyspnea (labored breathing or hunger for air) on exertion
  • easily getting out of breath ("dyspnea on exertion")
  • symptoms worsened by extremes of temperature
  • multiple sensitivities to medicines, food and other substances
  • allergies and sensitivities to noise/sound, odors, chemicals and medications
  • fainting
  • sore throat
  • frequently recurring, difficult to treat respiratory infections (40-60%)
  • high cholesterol

NOTE: There are, of course, symptoms which affect all, whereas some affect most.  However, I have to also add that there is a cultural bias here.  For example, mood swings are defined as one thing in one culture, yet something else in another culture.  In a Russian culture, for example, I'm pretty mild mannered, as is my husband, who comes from an Italian culture.  In an American culture, however, I'm at times considered "passionate," whereas hubby is considered "reserved."  Furthermore, if you are familiar at all with the dreaded SATS and even the IQ tests of the pre-80's era, there were great problems with this phenomenon of culture, so a bit of leeway is to be expected in this situation as well.  You've heard the joke, that the Episcopalians are "God's Frozen People?"  This I heard once from the head of the Anglican section of Newsweek magazine and I have YET to stop laughing.  


  1. It's insane to say that we experience pretty much at least 90 percent of all these things listed here. I know there are many professionals who claim that Fibromyalgia and other chronic pain/fatigue disorders are a mental disorder. I couldn't disagree more. It is a betrayal of the brain. Not of our mental state.

    1. Yes, Georgia. This is why I was so happy when Goldstein titled his book "Betrayal of the Brain." xx

  2. Fascinating.

    My first assessment with my 2nd physiatrist determined I have fibromyalgia, and when I asked about chronic fatigue, was told they are the same so won't bother noting it. He took the same stance on the rheumatologist's prior diagnosis of chronic myofascial pain syndrome. The pain doc agreed that the names don't matter.

    I disagree. Knowing whether it's an apple or an orange helps me to understand how to approach each (rather than: it's all fruit, so who cares?). I would think that even if they are the same species, are different animals.


    1. @FibroFacialGal: Did you get a chance to read the post discussing Myofascial Pain and Fibro? (Parachute picture) And yes, understanding leads to dealing w/ the problems easier and giving you a bit more control in your life! Doesn't sound as if the second physiatrist was quite up on things. This happens all too often. I also checked out your blog: great job w/ an LOL re that post! xx

  3. Hi,

    I love this blog post and want to leave a link in my blog to this page,
    but I don't know your name? and couldn't find it after a little scout around!