FM/CFS/ME RESOURCES - Archived FM & CFS/ME Poll Results
 

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ARCHIVED FM & CFS/ME POLL RESULTS

Polls 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These polls are no longer active.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 Voters 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 Voters 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 Voters 101

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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 193

The Worst Season For You:
Spring  (3.6% - 6 Votes)
Summer  (25.7% - 42 Votes)
Fall  (11.6% - 19 Votes)
Winter  (58.8% - 96 Votes)
Total Voters 163

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 Voters 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 Voters 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 Voters 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 Voters 183

How Do You Feel About The Recent Controversy Over the XMRV Virus?
Confusing  (77 votes, 40%)
Damaging  (5 votes, 3%)
Disbelief  (6 votes, 3%)
Frightening  (8 votes, 4%)
Never Heard of XMRV  (57 votes, 29%)
Potentially Useful  (35 votes, 18%)
Promising  (20 votes, 10%)
Other  (14 votes, 7%)
Total Voters 194

Have Dietary Changes Helped You?
Yes, They're Extremely Important  (23 votes, 12%)
Maybe A Little  (100 votes, 52%)
No  (68 votes, 36%)
Total Voters 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 Voters 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 Voters 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 Voters 166

Has Exercise Helped You?
Yes  (9.6% - 18 Votes)
Somewhat  (44.9% - 84 Votes)
No  (45.4% - 85 Votes)
Total Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 180

Did You Have FM or CFS/ME Before Your First Pregnancy?
No  (80.3% - 86)
Yes  (19.6% - 21)
Total Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 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 Voters 160

Do You Receive Disability/Disability Living Allowance?
Yes  (46% - 52 Votes)
No  (53.9% - 61 Votes)
Total Voters 113

Were You Denied Disability/Living Allowance After Appealing?
Yes  (47.3% - 18 Votes)
No  (52.6% - 20 Votes)
Total Voters 38

Will You Order The XMRV Test?
Yes  (34% - 16 Votes)
No  (65.9% - 31 Votes)
Total Voters 47

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 Voters 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 Voters 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 Voters 142

Money Spent on Treatments In The Last 12 Months? (such as medications, etc.)
Nothing  (15 votes, 8%)
Less Than $100  (24 votes, 13%)
$100- $500  (33 votes, 17%)
$790- $1000  (45 votes, 24%)
$2000- $5000  (50 votes, 26%)
$5000- $10,000  (10 votes, 5%)
More Than $10,000  (13 votes, 7%)
Total Voters 190

What Keeps You From Sleeping Well?
Bad Bed  (2.4% - 8 Votes)
I Wish I Knew  (10.8% - 36 Votes)
Pain  (30% - 100 Votes)
Sleep Disorder(s)  (31.2% - 104 Votes)
Stress  (22.5% - 75 Votes)
Too Much To Do  (3% - 10 Votes)
Total Voters 333

What Types of Pain Do you Experience?
Allodynia
when your skin hurts to the touch 		 (17.4% - 134 Votes)
Hyperalgesia
medical term for pain amplification 		 (13.5% - 104 Votes)
Knife in the Voodoo Doll
intense stabbing pain 		 (12.5% - 96 Votes)
Paresthesia
crawling/tingling/burning/itching/numbness 		 (20.9% - 161 Votes)
Randomly Roving Pain
migrates around the body 		 (12.6% - 97 Votes)
Rattled Nerves
on edge/jumpy/and feeling rattled 		 (12.5% - 96 Votes)
Sparkler Burns
tiny pin-pricks of pain 		 (10.2% - 79 Votes)
Total Voters 767

What is Your Average Daily Pain Level?
1-2
(sore - able to do activities easily) 		 (7.1% - 10 Votes)
3-4
(sore - need to take breaks) 		 (28% - 39 Votes)
5-6
(ouch! it really hurtstake medication) 		 (39.5% - 55 Votes)
7-8
(deep level of pain - can't work- can't move) 		 (23.7% - 33 Votes)
9-10
(unbearable pain - crying - in need pain injection) 		 (1.4% - 2 Votes)
Total Voters 139

What Medications Work Best?
Anticonvulsant (Neurontin etc.)  (17 votes, 9%)
Antiepileptic (Lyrica etc.)  (31 votes, 16%)
Benzodiazepines (Klonopin etc.)  (27 votes, 14%)
Marijuana  (38 votes, 20%)
Muscle Relaxers (Flexeril etc.)  (74 votes, 39%)
Narcotics (Vicodin etc.)  (95 votes, 50%)
Nothing  (24 votes, 13%)
NSAID's (Celebrex etc.)  (27 votes, 14%)
Sleep Medications (Lunesta, etc.)  (35 votes, 19%)
SSRI-SNRI's (Savella, Paxil, Cymbalta, etc.)  (60 votes, 32%)
Supplements/Vitamins  (64 votes, 34%)
Tricyclics (Amitriptyline etc.)  (21 votes, 11%)
Other  (32 votes, 17%)
Total Voters 189

What Helps You To Get Through The Day?
Pain Meds or Other  (25.8% - 77 Votes)
Exercise  (11% - 33 Votes)
My Friends/Family  (17.7% - 53 Votes)
Prayer  (15.4% - 46 Votes)
Doing Something I Enjoy (hobbies, etc.)  (29.8% - 89 Votes)
Total Voters 298

Worst Part of Having Fibromyalgia or CFS/ME
Daily Pain  (16.9% - 131 Votes)
Medications and/or Side Effects  (10.7% - 83 Votes)
Loss of Independence  (14.1% - 109 Votes)
Limited Mobility  (14.7% - 114 Votes)
Stares/Looks From Others  (4.1% - 32 Votes)
Frustration With Health Care Provider(s)  (12% - 93 Votes)
There Is No Cure  (10.2% - 79 Votes)
Loss of Cognitive Skills (concentrationmemoryetc.)  (17% - 132 Votes)
Total Voters 773

Did You Suffer From Abuse (physical-verbal) Before Onset?
Yes  (70.8% - 141 Votes)
No  (29.1% - 58 Votes)
Total Voters 199

Did You Develop FM or CFS/ME After Having A Hysterectomy?
Yes  (36.7% - 25 Votes)
No / Not Applicable  (63.2% - 43 Votes)
Total Voters 68

Do You Fall A Lot?
Yes - Several Times Monthly  (34.8% - 38 Votes)
Yes - Several Times Weekly  (26.6% - 29 Votes)
Yes - Several Times Daily  (10% - 11 Votes)
No / Not Applicable  (28.4% - 31 Votes)
Total Voters 109

Are You Left Handed or Right Handed?
Left Handed with CFS/ME  (7.8% - 12 Votes)
Left Handed with FM  (7.8% - 12 Votes)
Left Handed with Both (CFS/ME and FM)  (5.9% - 9 Votes)
Right Handed with CFS/ME  (13.8% - 21 Votes)
Right Handed with FM  (30.9% - 47 Votes)
Right Handed with Both (CFS/ME and FM)  (30.9% - 47 Votes)
Other  (2.6% - 4 Votes)
Total Voters 152

What Have You Been Diagnosed With?
CFS/ME  (10.8% - 20 Votes)
Fibromyalgia (FM)  (54.3% - 100 Votes)
Both (CFS/ME & FM)  (30.9% - 57 Votes)
Other  (3.8% - 7 Votes)
Total Voters 184

What Doctors Help You The Most?
Acupuncturist  (19 votes, 10%)
Allergist - ENT  (5 votes, 3%)
Anesthesiologist/Pain Management Specialist  (22 votes, 11%)
Chiropractor  (23 votes, 12%)
Family Doctor/General Practitioner/Osteopath  (101 votes, 53%)
Immunologist  (4 votes, 2%)
Infectious Disease  (1 votes, 1%)
Mental-Health Practitioner  (23 votes, 12%)
Naturopath  (5 votes, 3%)
Neurologist  (21 votes, 11%)
Neurosurgeon  (7 votes, 4%)
None  (32 votes, 17%)
Orthopaedic Specialist  (5 votes, 3%)
Other Specialist  (27 votes, 14%)
Physical or Massage Therapist  (41 votes, 21%)
Rheumatologist  (32 votes, 17%)
Total Voters 192

Which Dysautonomia Symptoms are Worst For You?
Anxiety Attacks  (7.7% - 92 Votes)
Aches & Pains  (14.6% - 175 Votes)
Depression  (8.6% - 103 Votes)
Digestive Problems  (9.1% - 109 Votes)
Dizziness/Fainting  (7.5% - 90 Votes)
Fatigue  (15.2% - 182 Votes)
Numbness & tingling  (10.2% - 122 Votes)
Poor Exercise Tolerance  (11.3% - 135 Votes)
Rapid Heart Rate  (5.7% - 69 Votes)
Sweating  (9.7% - 116 Votes)
Total Voters 1,193
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