In 2009 I began polling my members and readers to see if they experienced the same
things I do with FM and CFS/ME. The following results are the culmination of those
polls.
These polls are no longer active.
Your gender:
Male
(4% - 4 Votes)
Female
(96% - 97 Votes)
Total Responses
101
Your current age:
Under 20
(3% - 3 Votes)
21 - 29
(8% - 8 Votes)
30 - 39
(23% - 23 Votes)
40 - 49
(35% - 35 Votes)
50 - 59
(26% - 26 Votes)
60 - 69
(5% - 5 Votes)
70 or older
(1% - 1 Vote)
Total Responses
101
Your diagnosis:
CFS/ME
(9% - 9 Votes)
Fibromyalgia (FM)
(45% - 45 Votes)
Both (CFS/ME & FM)
(39% - 39 Votes)
Not Diagnosed with either
(8% - 8 Votes)
Total Responses
101
What Type of Trauma Did You Incur Before You Got Sick?
Auto Accident
(27% - 49 Votes)
Fall
(16% - 29 Votes)
Physical Abuse
(21% - 38 Votes)
Mental Abuse
(32% - 58 Votes)
Work Related Accident
(9% - 17 Votes)
Other
(57% - 104 Votes)
Total Responses
182
How long have you been diagnosed with FM or CFS/ME?
0 - 4 years
(33% - 33 Votes)
5 - 10 years
(30% - 30 Votes)
11 - 17 years
(18% - 18 Votes)
18 - 25 years
(11% - 11 Votes)
More than 25 years
(1% - 1 Vote)
Not Diagnosed
(8% - 8 Votes)
Total Responses
101
How long did you have symptoms before getting diagnosed with FM, CFS/ME or both?
0 - 4 years
(39% - 39 Votes)
5 - 10 years
(27% - 27 Votes)
11 - 17 years
(12% - 12 Votes)
18 - 25 years
(9% - 9 Votes)
More than 25 years
(6% - 6 Votes)
Not Diagnosed
(8% - 8 Votes)
Total Responses
101
How many doctors did you see before getting diagnosed with FM or CFS/ME?
1 - 4 doctors
(46% - 46 Votes)
5 - 8 doctors
(29% - 29 Votes)
9 - 15 doctors
(11% - 11 Votes)
More than 15 doctors
(6% - 6 Votes)
Still trying to get diagnosed
(4% - 4 Votes)
Not Diagnosed
(4% - 4 Votes)
Total Responses
100
Who officially diagnosed your FM or CFS/ME?
Rheumatologist
(35% - 35 Votes)
Physical medicine and rehab specialist (physiatrist)
(4% - 4 Votes)
Pain specialist
(6% - 6 Votes)
Primary care physician / family doctor
(26% - 26 Votes)
Internist
(2% - 2 Votes)
Neurologist
(11% - 11 Votes)
Osteopath
(0 Votes)
Chiropractor
(0 Votes)
Nurse practitioner
(0 Votes)
Other
(9% - 9 Votes)
Not Diagnosed
(8% - 8 Votes)
Total Responses
101
Who is primarily in charge of your current FM or CFS/ME treatment?
Rheumatologist
(10% - 10 Votes)
Physical medicine and rehab specialist (physiatrist)
(2% - 2 Votes)
Pain specialist
(10% - 10 Votes)
Primary care physician / family doctor
(51% - 52 Votes)
Internist
(3% - 3 Votes)
Neurologist
(2% - 2 Votes)
Osteopath
(2% - 2 Votes)
Chiropractor
(0 Votes)
Nurse practitioner
(2% - 2 Votes)
Other
(11% - 11 Votes)
Not Diagnosed
(7% - 7 Votes)
Total Responses
101
Your Country:
Australia
(5% - 5 Votes)
Canada
(6% - 6 Votes)
France
(0 Votes)
Germany
(0 Votes)
Ireland
(0 Votes)
Israel
(0 Votes)
New Zealand
(2% - 2 Votes)
Other
(5% - 5 Votes)
United Kingdom
(23% - 23 Votes)
United States
(125% - 125 Votes)
Total Responses
166
How Has Your Illness Changed in the Last Year?
Symptoms Are Gone
(2 votes, 1%)
Has Improved With Treatments
(25 votes, 13%)
Has Improved Without Treatments
(1 votes, 1%)
Has Stayed The Same
(63 votes, 33%)
Has Gotten Worse With Treatments
(65 votes, 34%)
Has Gotten Worse Without Treatments
(37 votes, 19%)
Total Responses
193
Did you Grow Up With Alcoholic Parent?
Yes
(30% - 57 Votes)
No
(70% - 131 Votes)
Total Responses
188
Did you Grow Up With A Chronically Ill Parent?
Yes
(25% - 47 Votes)
No
(75% - 138 Votes)
Total Responses
185
Are You An Organ Donor?
Yes
(91 votes, 47%)
I'm Thinking About Becoming A Donor
(9 votes, 5%)
I Was, But Since Changed My Mind Due To XMRV
(19 votes, 10%)
No
(75 votes, 39%)
Total Responses
194
What Lifestyle Changes Have Helped the Most?
Better Sleep Habits
(57 votes, 30%)
Cognitive Behavioral Therapy (CBT)
(14 votes, 7%)
Diet
(44 votes, 23%)
Exercise
(41 votes, 22%)
Finding Support
(70 votes, 37%)
Getting Sun (additional Vitamin D)
(60 votes, 32%)
Improving Coping Skills
(68 votes, 36%)
Job Changes/Quit Working
(80 votes, 42%)
None
(29 votes, 15%)
Pacing
(75 votes, 39%)
Simplifying
(97 votes, 51%)
Stress Management
(66 votes, 35%)
Other
(19 votes, 10%)
Total Responses
190
What Do You Think Caused Your Fibromyalgia?
Blood Transfusion
(7 votes, 4%)
Chemotherapy
(1 votes, 1%)
Genetic Abnormality
(42 votes, 22%)
Hormone Imbalance
(29 votes, 15%)
Immune Abnormality
(31 votes, 16%)
Neurological Abnormality
(41 votes, 21%)
Sleep Disorders
(43 votes, 22%)
Stress
(98 votes, 51%)
Trauma - Either Physical or Mental
(123 votes, 66%)
Undiscovered Infection
(25 votes, 13%)
Vaccine or Vaccination
(8 votes, 4%)
XMRV or Other Retrovirus
(16 votes, 8%)
Other
(13)
Total Responses
194
What Do You Think Caused Your CFS/ME?
Blood Transfusion
(1 votes, 1%)
Chemotherapy
(1 votes, 1%)
EBV, CMV, HHV-6 or Other Virus
(28 votes, 15%)
Exposure to Toxins
(15 votes, 8%)
Genetic Abnormality
(24 votes, 13%)
Immune Abnormality
(42 votes, 23%)
Lyme Disease
(2 votes, 1%)
Neurological Abnormality
(22 votes, 12%)
Stress
(60 votes, 33%)
Trauma - Either Physical or Mental
(67 votes, 37%)
Undiscovered Infection
(30 votes, 16%)
Vaccine or Vaccination
(8 votes, 4%)
XMRV or Other Retrovirus
(18 votes, 10%)
Other
(17 votes, 9%)
Total Responses
183
Have Dietary Changes Helped You?
Yes, They're Extremely Important
(23 votes, 12%)
Maybe A Little
(100 votes, 52%)
No
(68 votes, 36%)
Total Responses
191
How Has FM or CFS/ME Affected Your Marriage/Relationship?
Not Much Change
(10% - 34 Votes)
For The Better
(7.3% - 25 Votes)
Caused Some Problems
(45% - 153 Votes)
Caused Serious Problems
(18.2% - 62 Votes)
Relationship Ended
(19.4% - 66 Votes)
Total Responses
340
Do You Exercise?
Never
(14.2% - 24 Votes)
Rarely
(46.1% - 78 Votes)
Somewhat Regularly
(32.5% - 55 Votes)
Regularly
(7.1% - 12 Votes)
Total Responses
169
What Type of Exercise?
Dancing
(1.2% - 2 Votes)
Other
(5.4% - 9 Votes)
Pilates
(1.8% - 3 Votes)
Physical Therapy
(1.8% - 3 Votes)
Running
(.60% - 1 Votes)
Stretching
(15% - 25 Votes)
Swimming
(9% - 15 Votes)
Tai Chi
(1.2% - 2 Votes)
Walking
(40.9% - 68 Votes)
Weights/Weight Training
(2.4% - 4 Votes)
Yoga
(5.4% - 9 Votes)
N/A (Don't Exercise)
(14.45% - 24 Votes)
Total Responses
166
Has Exercise Helped You?
Yes
(9.6% - 18 Votes)
Somewhat
(44.9% - 84 Votes)
No
(45.4% - 85 Votes)
Total Responses
187
Does Your Fibromyalgia or CFS/ME Make You Clumsy?
Oh YEAH!
(84% - 163 Votes)
Maybe Just A Little
(14.9% - 29 Votes)
Not At All
(.5% - 1 Votes)
I'm The Picture of Grace!
(.5% - 1 Votes)
Total Responses
194
Family Members with FM or CFS/ME
Husband
(0 Votes)
Wife
(3.9% - 5 Votes)
Mother
(23.8% - 30 Votes)
Father
(1.5% - 2 Votes)
Grandparent(s)
(4.7% - 6 Votes)
Uncle(s)
(.79% - 1 Votes)
Aunt(s)
(16.6% - 21 Votes)
Cousin(s)
(11.1% - 14 Votes)
Sister(s)
(23.8% - 30 Votes)
Brother(s)
(2.3% - 3 Votes)
Niece(s)
(11.1% - 14 Votes)
Nephew(s)
(0 Votes)
Total Responses
126
What Neurological Conditions Are In Your Family?
ADD/ADHD
(8.6% - 43 Votes)
Addiction
(16.4% - 82 Votes)
ALS
(0.2% - 1 Votes)
Alzheimer's
(6.2% - 31 Votes)
Depression
(26.4% - 132 Votes)
Insomnia
(15.6% - 78 Votes)
Lots of FM or CFS/ME
(13.8% - 69 Votes)
OCD
(6.2% - 31 Votes)
Phobias
(6.4% - 32 Votes)
Total Responses
499
At What Age Did You Begin Menopause?
19-29 Years Old
(6 votes, 3%)
30-39 Years Old
(21 votes, 11%)
40-49 Years Old
(55 votes, 28%)
50-59 Years Old
(22 votes, 11%)
60+ Years Old
(1 votes, 1%)
Total Responses
193
Does The Possibility of Having XMRV Make You Rethink Having Children?
No
(48.8% - 88)
Yes
(22.7% - 41)
Undecided
(28.3% - 51)
Total Responses
180
Did You Have FM or CFS/ME Before Your First Pregnancy?
No
(80.3% - 86)
Yes
(19.6% - 21)
Total Responses
107
Did Your Symptoms Change During your First Pregnancy?
Symptoms Got Better
(8.5% - 4)
Symptoms Got Worse
(27.6% - 13)
Neither - Just Different
(19.1% - 9)
No Change
(44.6% - 21)
Total Responses
47
Did You Breast Feed Your First Baby, If So For How Long?
Less Than 1 Month
(21.9% - 20)
3 Months or Less
(13.1% - 12)
6 Months or Less
(15.3% - 14)
12 Months or Less
(12% - 11)
Over A Year
(4.3% - 4)
Not At All
(32.9% - 30)
Total Responses
91
Did Breastfeeding Affect Your FM and/or CFS/ME?
Pain Got Better
(0 Votes)
Pain Got Worse
(10.7% - 3 Votes)
Fatigue Got Better
(0 Votes)
Fatigue Got Worse
(17.8% - 5 Votes)
No Change
(71.4% - 20 Votes)
Total Responses
28
Do Any of Your Biological Children Have FM?
1-2 Daughters w/FM
(7% - 12 Votes)
3-4 Daughters w/FM
(0 Votes)
5 + Daughters w/FM
(0.5% - 1 Votes)
1-2 Sons w/FM
(2.3% - 4 Votes)
3-4 Sons w/FM
(0 Votes)
5+ Sons w/FM
(0 Votes)
NO CHILDREN WITH FM
(60.8% - 104 Votes)
N/A (Don't Have Children)
(29.3% - 50 Votes)
Total Responses
171
Do Any of Your Biological Children Have CFS/ME?
1-2 Daughters w/CFS/ME
(2.4% - 4 Votes)
3-4 Daughters w/CFS/ME
( - 0 Votes)
5 + Daughters w/CFS/ME
(0.6% - 1 Votes)
1-2 Sons w/CFS/ME
(0.6% - 1 Votes)
3-4 Sons w/CFS/ME
(0 Votes)
5+ Sons w/CFS/ME
(0 Votes)
N0 CHILDREN w/CFS/ME
(66% - 109 Votes)
N/A (Don't Have Children)
(30.3% - 50 Votes)
Total Responses
165
How Do You Score on the Fibromyalgia Impact Questionnaire (FIQ)?
Low (Under 25)
(1.1% - 1 Votes)
Below Average (26-50)
(2.2% - 2 Votes)
Average to High (50-69)
(35.2% - 31 Votes)
Severe (70+)
(61.3% - 54 Votes)
Total Responses
88
How Did Your Holiday Routine Change?
I Did It All With No Problem
(0 Votes)
I Did It All With Flares
(15.8% - 17 Votes)
I Paced Myself But Didn't Do Any Less
(9.3% - 10 Votes)
I Did A Little Less
(11.2% - 12 Votes)
I Did A LOT Less
(48.5% - 52 Votes)
I've Stopped Altogether
(14.9% - 16 Votes)
Total Responses
107
How Many Medical Conditions Do You Have?
1-3
(22.8% - 37 Votes)
4-6
(49.3% - 80 Votes)
7-9
(13.5% - 22 Votes)
10-12
(8% - 13 Votes)
13+
(6.1% - 10 Votes)
Total Responses
162
Do You Run Hot - Cold or Fluctuate?
I'm Always Hot!
(17.9% - 28 Votes)
I'm Always Cold!
(4.4% - 7 Votes)
Fluctuate With The Weather
(14.1% - 22 Votes)
Fluctuate Randomly
(63.4% - 99 Votes)
Don't Have Temperature Issues
(0 Votes)
Total Responses
156
Are You Still Working?
Yes - 40+ Hours A Week
(9.3% - 15 Votes)
Yes - 20-40 Hours A Week
(13.1% - 21 Votes)
Yes - 10-19 Hours A Week
(0.6% - 1 Votes)
Yes - 5-9 Hours A Week
(1.8% - 3 Votes)
Yes - 1-4 Hours A Week
(3.7% - 6 Votes)
Not Working
(71.2% - 114 Votes)
Total Responses
160
What Type Of Job Do You Have Outside The Home?
Barber - Beautician
(5 votes, 3%)
Clerical - Office Worker
(13 votes, 8%)
Civil Service
(2 votes, 1%)
Company Secretary
(5 votes, 3%)
Computer -Sales /Support
(1 votes, 1%)
Customer Service
(7 votes, 4%)
Data Processing
(1 votes, 1%)
Designer
(1 votes, 1%)
Education - Teacher
(9 votes, 5%)
Engineer
(1 votes, 1%)
Factory Worker
(1 votes, 1%)
Fast Food
(3 votes, 2%)
Government Worker
(3 votes, 2%)
Health Field - Doctor/Nurse/Therapist
(15 votes, 9%)
Insurance
(1 votes, 1%)
IT Worker
(2 votes, 1%)
Lawyer
(1 votes, 1%)
Legal Secretary
(3 votes, 2%)
Librarian
(1 votes, 1%)
Personal Assistant
(3 votes, 2%)
Photographer
(2 votes, 1%)
Retail
(3 votes, 2%)
Sales
(5 votes, 3%)
Social Worker
(5 votes, 3%)
Technician
(2 votes, 1%)
OTHER
(104 votes, 62%)
Total Responses
169
Do You Receive Disability/Disability Living Allowance?
Yes
(46% - 52 Votes)
No
(53.9% - 61 Votes)
Total Responses
113
How Many Times Did It Take You To Win Disability/Living Allowance?
1-3 Tries
(35% - 66 Votes)
4-6 Tries
(5% - 9 Votes)
Never Won
(18% - 33 Votes)
Doesn't Apply
(42% - 79 Votes)
Total Responses
187
Have You Changed Careers Since Onset of FM and/or CFS/ME
Yes
(35% - 67 Votes)
No
(28% - 53 Votes)
Doesn't Apply
(37% - 69 Votes)
Total Responses
189
Have You Tried Savella?
Yes I'm Currently Taking It
(9.6% - 25 Votes)
Yes, But I Quit It
(45.1% - 103 Votes)
No, But Considering It
(18.8% - 43 Votes)
Not Interested
(25% - 57 Votes)
Total Responses
228
Why Did You Quit Savella?
Never Worked For Me
(3.5% - 1 Votes)
Stopped Working
(0 Votes)
Side Effects Were Too Strong
(71.4% - 20 Votes)
Couldn't Afford Medication
(10.7% - 3 Votes)
Other Reasons Not Listed
(14.2% - 4 Votes)
Total Responses
28
How Many Drugs/Supplements Are You Taking A Day?
None
(1.4% - 2 Votes)
1-3
(11.26% - 16 Votes)
4-6
(31.6% - 45 Votes)
7-10
(19.7 - 28 Votes)
11-15
(24.6% - 35 Votes)
16-20
(2.1% - 3 Votes)
21-25
(7.7% - 11 Votes)
26+
(1.4% - 2 Votes)
Total Responses
142
What Treatments Have Been Effective For You?
Acupuncture
(25 votes, 14%)
Acupressure
(9 votes, 5%)
Biofeedback-Relaxation
(11 votes, 6%)
Gentle Exercise
(46 votes, 26%)
Heat Therapy
(78 votes, 44%)
Massage -Physical Therapy
(70 votes, 39%)
Swimming-Hydrotherapy
(37 votes, 21%)
Trigger Point Injections
(23 votes, 13%)
Antidepressants
(94 votes, 53%)
Anti-Anxiety Medications
(61 votes, 34%)
Guaifenesin
(3 votes, 2%)
Muscle Relaxants
(70 votes, 39%)
OTC (over-the-counter) Medications
(30 votes, 17%)
Pain Medicines
(122 votes, 68%)
Sleep Medications
(69 votes, 39%)
OTHER
(39 votes, 22%)
Total Responses
179
Money Spent on Treatments In The Last 12 Months? (such as medications, etc.)