The Numbers Behind The Pain
2002
By: Anne-Marie Vidal, MPA
I want to thank Angel La Canfora of Torrance, Ca who just because she was my friend, helped me count and sort data until her eyes crossed!
Fibromyalgia patients, and those with other Invisible Disabilities share so many challenges to their existence. We contend with the “All in your Head” syndrome affecting so many medical practitioners and to some extent our families. We face isolation socially and emotionally; and often devastating financial loss. Due to professional and academic training, I felt that it was possible to gather and present data that demonstrates the dramatic detours our lives take.
How Survey was taken
I conceived the idea of this survey during a bout with insomnia in May of 2000. It took me 3 weeks and the generous assistance of Karin Armour of NFA and Angel La Canfora to adequately revise the survey for circulation. Data was collected from May 30 to November 30, 2000.
The survey received no organizational or financial support although attempts were made to gain that from 3 different organizations. The responses indicated that the author was considered unproven in the area of data analysis and perhaps unqualified. (I was a systems analyst and designer over a 20-year period. Later, as a college professor my specialty was teaching courses in Medical administration, including diagnostic coding and billing.)
The sample for the survey was wholly voluntary and was predominantly via the Internet. One hundred eleven surveys were returned to me via e-mail (of those 6 were too incomplete or electronically damaged and discarded). I received 24 in the mail from people who had heard of the survey via word of mouth and gone out of their way to obtain one. These respondents spent $.67 to participate in a survey regarding their illness from someone they did not know; this demonstrates most patients’ willingness to be heard on the topic of their disorder as well as the will to participate in care. The remainder of the sample was obtained through support groups in the New York City and Philadelphia metropolitan areas.
It can be argued that a self-selected survey would automatically indicate that the respondents were those who felt themselves to be the most ill. However, it is equally arguable that these responses demonstrate most patients’ belief that Fibromyalgia is inadequately studied, understood and treated. I have been criticized for contending that patients who are ill would be spending time on the Internet; but two of the respondents to this survey were on posting messages and chatting with others within in days of their demise. Need died by their own hand, one succumbed to heart failure at the age of 46 and the other had a stroke.
The sample has too few male participants. Although men were available through the avenues I used, most were uncomfortable with the survey. One Internet group leader, felt that the despite the anonymity, the questions “were too intimate and should only be asked by a doctor.” Hence, no conclusions of the male experience with FMS should be made.
Characteristics of Respondents
Participants in this project were asked to place their age in one of 8 age ranges; the youngest category was 16 to 21; the oldest category was 57 to 62 years of age. The majority of participants ranged from 40 to 50 years of age and was distributed between the categories as 36 patients (21.6%) were between the ages 36 - 40; and 54 (or 32.5%) were aged 45 to 50. The next most numerically significant age group was 34 to 39 with 25 patients 15% in that category.
Ninety-three percent of the respondents were women; 88 % Caucasian. The preponderance of women responding to the survey reflects their gender socialization and willingness to share details of personal lives that many men are uncomfortable with. The 93 % women statistic does not mean that only women “develop Fibromyalgia,” but is more likely indicative that men were not as prevalent a member of various internet and other support groups to hear of the survey. There were other indications that some men were not as willing to answer the questions. The ethnicity question appeared at the end of the survey and was optional, however everyone answered it. Additionally, the survey response was not intended to obtain such a disproportionate sample ethnically. Most of the minority participants were obtained through direct contact interviews; only 2 were not obtained that way. In general, it is seems that minority women are just as likely to have Fibromyalgia, but are not as likely to be diagnosed and not as likely to have Internet and support group access.
Living arrangements
Living arrangements were as varied as one might find in any sample. Thirty nine percent of respondents were living with their spouse and children. A significant number, 16.8 %, live with a long-term partner to whom they are not married. While the year 2000 census revealed 8.8 of adult over 18 years of age to live alone, 16.2 % of fibromyalgia patients do so. Of these 7 of the 27 noted that they depend on friends and relatives for assistance doing errands and shopping.
Another statistic outside the norm of the general population was the number of patients who are single parents raising their children: Twenty–seven percent of households with children under 18 are single parent houses in the general population. Of those 89% are households where in the mother is the custodial parent. In this survey, single parents made up 10.8% of the sample and the mothers headed all. Raising a child in a single parent family is an extraordinary challenge and one that would be very difficult for mothers with Fibromyalgia to cope with. Relationships are ones of several unexplored social issues and anecdotal comments indicate that women stay in relationships they state they would otherwise leave.
According to US census 2000 statistics 7.7 % of the general population lives in the parental home, 4.8% of patients in this survey live with parents however that includes the juveniles who responded to the survey. Two respondents indicated that they lived with spouse and parents and both of those respondents indicated commented that this arrangement was predicated on their financial need.
Only one respondent needed to have a home health aid caring for them.
Age at the time of diagnosis:
“Something was wrong long before a doctor named it…”
Ages were divided into 8 categories with respondents allowed to check one. Participants ranged in age from 12 to 60 at the time of their diagnosis. Those under 20 at time of diagnosis were 8.4% of participants. Those who were diagnosed between the ages of 21 and 25 years of age, were 4.2%; 6% were from 26 –30 years of age when diagnosed with Fibromyalgia.
Numbers of diagnosis rise in next two age categories, however, I would caution against seeing Fibromyalgia as age related. The number of years during which a diagnosis is sought impacts the average age at diagnosis, which becomes meaningless here. Patients who had their disorder confirmed at ages 31 to 35 those diagnosed were 24 (14.4%. The largest single age range in which diagnoses occurred was from ages 36 to 40, those diagnosed numbered 45 (27.1%). The next largest age range for diagnosis was 41 to 45 years with 33 patients (19.8). Diagnoses after 45 are in lower numbers: in the age range 46 to 50, 10 patients (6%) and from 51 to 60, 15 patients were diagnosed (9%). However, age at diagnosis does not indicate age of onset of illness. The next section is number of years seeking a diagnosis.
Years spent seeking a diagnosis-- “Doctors said it was all in my head.”
Time ranges for years seeking a diagnosis were in 8 categories with the categories covering a period of time spent seeking a diagnosis beginning at two months and concluding at 21 years. The most frequently encountered time period was 3-5 years; the time reported by 44 respondents or 30.1 % of respondents. Thirty-two patients or 21.9 % of the sample spent 1-2 years seeking a diagnosis. The third highest range was 6-10 years, the time it took 25 (17.1%) patients to be diagnosed. Sadly 18.7 percent of patients sought help for their medical problems for more than 10 years. Hopefully, as physicians receive more education regarding invisible disabilities, time spans for patients seeking a diagnosis will shorten and become more reasonable.
Approximately how many physicians seen (while seeking a diagnosis)? “No one would believe that I was sick…”
The responses to the question were divided into 7 possible number ranges. Began with 1-2 and ended with 50 or more. Despite the availability categories, 153 respondents indicated a number; 10 added the comment “Too many” or a similar qualitative response. The majority (64) of the patients (41.8%) saw between 3 and 5 doctors to be diagnosed. In a numerical ranking the categories that were next were 6-10 doctors-- 26.8% or 41 patients. More than 68% of FMS patients see several physicians to receive a diagnosis; if you consider that 52% of patients spend more than 1 year and as many as 5 seeking a diagnosis, age at time of diagnoses is skewed by this information. I note this because some skeptics see FMS as a by-product of peri-menopause or menopause.
Emotional life –
That patients feel their lives contract is unquestionable. Some point to the end of marriages, relationships and the estrangement of long-term friends as consequence of their disorder. Others say that leaving the workforce is isolating. A few participants indicated that friends and family members still believe that their symptoms and illness are psychological in origin and urge them to seek counseling or “get anti-depressants.” Feeling misunderstood or made to defend one’s health status does not encourage one to attempt social activities. Some of the comments on this topic were variants of “98% of my social life is on the Internet.” Or “fewer people visit after awhile.”
Affect on Daily Life
Forty four percent feel that FMS patients are mobility challenged; of these the majority use a cane although a significant number, 38; 9% use braces and crutches; 14.7% use a walker and 26 are in a wheel chair. (Percentages are based on total answering the question).
Activities requiring organization or computation skills seem to pose the most problems for Fibromyalgia patients. The activities that pose the most problems are paying bills and housework. Activities that were also difficult and that respondents sought assistance for as indicated by responses were ranked after housework and paying bills, in this order: Writing Checks, Bathing, Shopping, Cooking, Using the Bathroom, and Dressing.
Social Occasions
There is no doubt that the disease greatly and adversely affects the social life of FMS patients. Of the 153 responses, 71% indicated that their attendance at social occasions was affected; 29% were not. When asked frequency of attendance, the majority of 112 respondents 18.7% noted their social activities were limited to once or twice a year, 54% said they attended events several times a year. For skeptics, I would like to note that the responses do not fall strictly into the order of the frequency or participation.
Employment status
Fifty-one of the respondents had either full or part time work. Since respondents were not restricted to one answer, percentages were calculated against the total number of respondents, that represents 31% of the total participants. Additionally, 11 (6.6%) were involved in volunteer work. The fact that more than a third of Fibromyalgia patients were working in some capacity outside the home belies characterizations of us as bored housewives either unhappy with out lives or women who do not know how to be well. Another 41 were unemployed but were either working or considering seeking work; Twenty-four were in the process of applying for disability while 27 had been denied either some form of disability.
Over all patients with private disability insurance seemed to have an easier time of gaining benefit; no one was denied short term disability; of 18 applicants for long term disability, only one was denied. Those who applied for workers compensation were only four and two were successful. The numbers on Social Security Disability were optimistic: 29 applied and only 5 were unsuccessful. Fewer people applied for SSI assistance: only 12 and two thirds were successful.
When asked if “Have You Asked Employer/School for Reasonable Accommodation?” 138 respondents answered the question. There were more than those working outside the home at time of the survey. Many answers may reflect actions and attitudes at previously held jobs. Eighty-two (or 59%) people responded that they had not posed the question to employers. The next question on whether those needs were accommodated again demonstrated both the employers’ and patients’ discomfort with the issue of special accommodation for disabled workers. No doubt this was complicated by the fact that the disabilities involved here are invisible and may require flexible scheduling and appropriate office chair and exemption from certain activities such as lifting makes both employers and participants uncomfortable and unsure of how to proceed.
FMS and Life Plans
When I asked the question has Fibromyalgia been a factor in your Career or school, 160 participants answered, 143, 89%, said “yes.” The issue was elaborated on by subdividing it. Participants were allowed to answer yes or No to decisions to change jobs, schools or careers; 109 participants responded to the issue of jobs. Ninety-three or 85% answered yes, FMS had been a factor in a decision to move to another job.
The question regarding schools, was general and solicited information and was meant to include curriculum as well as school changes. There were 45 answers, with 60 % replying yes. On the issue of careers, there were 66 responses, and 56 of those said Yes, FMS had been a factor in their decision to change careers. Interestingly, 51 were working at the time of the survey; answers could indicate that participants may have the decision to stop working was brought about by Fibromyalgia and changes in health status. Only 30 respondents answered the question about a change in course of study. Anecdotally, at least 17 participants indicated that they had left school or changed majors when their FMS had begun to be a factor in their concentration and other cognitive skills.
To accommodate their illness 62% of the 151 participants answered that they changed careers. There were 26 responses to next question regarding the effect on their earning capacity; the third part of the question asked whether their income was higher or lower, 92% indicated their income was lower. This was borne out by anecdotes in a separate part of the survey where comments were solicited. Eight wrote that their had been severe financial impact on their family because of job loss due to FMS or the inability to work. Two respondents told of losing their homes through mortgage foreclosure, another stated she had lost her business. Several participants clipped notes to their surveys indicating that the financial impact on the home had alienated children, relatives and friends. The saddest anecdote recounted the experience of pawning jewelry for the cash it would bring.
Reproductive Issues:
There are many physical, financial, and home support issues involved in deciding to begin a family. These are complicated by the presence of FMS in a family and the associated loss of income leaves no doubt that FMS does indeed affect patients’ ability to obtain economic security. Only 23% of the women believed themselves to have fertility issues. (The rate of infertility in the general population of couples of childbearing age is 10% according to several sources such as WebMD and Discovery-Health.) Also participants’ decisions to become parents are affected by chronic illness, especially one that is accompanied by debilitating fatigue. One woman emphatically wrote “I can not get pregnant when I hardly know if I can support myself.”
Notably, the majority of the 115 women who answered the question regarding miscarriages, the rate of fetal loss were 32%; in the general population it is 20%. Sadly, the 37 women who did report miscarried pregnancies experienced more than one, reporting 71 cases of fetal loss. Fewer women (89) responded to the question “Did you achieve live birth?” and a variety of reasons may have affected their answers: decisions not to participate in parenthood, and not wanting to risk more fetal loss were two that were mentioned.
The number of women noting unusual clotting and heavy menstrual periods is 68% of the women who participated in the survey. Forty-seven women, slightly more than 30% indicated that they had infrequent or scanty menses. The gynecology of Fibromyalgia is a minimally explored topic for research.
The sample of men (11) is too small to allow any extrapolations on their genitourinary health; but they seemed to fare better than women with FMS. However, Fibromyalgia effect on genitourinary health in men seems to be largely unexplored.
Do you have trouble with?
All participants listed brain fog as a problem they experience with 66% indicating that it was a daily event; 15% indicated it happens several times a week, and 9.5 felt it happened twice daily.
Participants here check as many as apply. Research demonstrates that cognitive problems will manifest themselves in a variety of ways, so this section is more qualitative in that most participants have several if not many problems with keeping their lives on track. Concentration problems are those most frequently experienced; next participants noted problems beginning tasks they have a desire to complete. For instance one participant commented that “I wander from room to room, trying to remember what it is I meant to do…” or “I am not procrastinating…I just can’t get started.” The activities that adults usually engage in become problematic: balancing a check book; correcting children’s homework; and running errands make it difficult to manage a household.
Additional diagnoses:
With Fibromyalgia comes many attendant problems. Participants were instructed to check as many as applied from a list of 15 problems often associated with FMS. The answers demonstrate that most of the Fibromyalgia population battles with more than one health issue. Sleep disorders (82%) were the most frequently identified problem; next were Back/Spinal problems (80) followed by depression (70). Other frequently shared problems included in this order: Allergies, Anxiety, Irritable Bowel Syndrome, and Migraines.
When asked if “ FMS Require You to Spend More Time on Personal Care? 83% of those answering, answered “Yes.” Patients are saying that chronic pain and sleeplessness make it harder to get ready to begin a their day and that it takes longer to perform general grooming tasks and have changed their daily routine in some form.
Patient Health Care
When asked about health insurance, 94% of those answering had some medical coverage and an almost equal number, 95%, are under the care of a physician. This might indicate that this patient sample had attained a standard of living, which allowed regular health care.
The largest number of patients in this sample, sixty or 42%, of participants states that their insurance is type of managed care other than Medicaid, or private HMO. These patients are most likely treated in Provider networks. The next group in size (29 or 20% of those answering this question) is insured by a private health maintenance organization. While the statistics on insurance are enlightening, it is important to note that those relying on Medicare, Medicare/HMO or Medicaid/Medicare equals 20%; the significance of this statistic is that there are likely to be limitations on the numbers of doctors appointments a year as well as restrictions on types of medications used and available. Only 10.5% of those surveyed have traditional indemnity insurance (80/20 for most doctors visits and medications). These patients may have the economic freedom to seek care as needed but must bear the brunt of the cost.
Of the patients responding to the question regarding which specialty is their primary care provider; nearly 60% of patients enlist the General or Family practitioners for their care, while 39.7% use the services of an internist. Sixty eight percent indicate that they seek the services of other specialties: Rheumatologist, Gastroenterologist, and gynecologists. Most of our physicians do not make referrals to specialists difficult and will provide them; only 18% of patients responding to the question about referrals felt their physician made it hard to obtain.
Fifty-nine percent of the patients in this sample indicated that they were able to see their physicians whenever they needed to see him as opposed to being on a schedule. Eighteen percent are on a monthly schedule with their practitioner; 17 percent indicated that they saw their doctor quarterly.
When asked “Does Your Physician Keep Abreast of FMS Research?” 59% answered yes. However, more than a third of the respondents answering the question stated that they supplied information to their doctors regarding FMS and its other problems.
Quite a few patients state their physicians allow the use of physical and massage therapy. The Data
Survey Totals (166 total)
Age at time of survey- 166 responses
3 -16 to 21 1.8
7 - 22 to 27 4.2%
12 - 28 to33 7.2
25 - 34 to 39 15%
36 - 40 to 45 21.6%
55 - 45 to 50 32.5%
23 - 51 to 56 13.2%
5 - 57 to 62 3%
Gender-
11 - Male
155- Female 93.3%
Personal Status- 166 responding
20 - Live Alone 12%
17 - Live w/spouse 10.2
8 - Live w/parents 4.8
2 - Live w/spouse & parents 1.2
65 - Live w/spouse & children 39.1%
18- Single parent w/children 10.8
28 - Live w/long term partner 16.8
1- Live alone w/home health or personal care aid .6%
7 - Live alone but friends help 4.2%
Age at Time of Diagnosis- 158 responses
Percentages
14 - 0 to 20 8.8%
7 - 21 to 25 4.4%
10 - 26 to 30 6.3 %
24 - 31 to 35 15.1
45 - 36 to 40 28.4
33 - 41 to 45 20.8
10 - 46 to 50 6.3
15 - 51 to 60 9.4
How Many Years Seeking Diagnosis? 146
12 - 0 to 6 months 8.2
5 - 7 months to 1year 3.4
32 1-2 years 21.9
44- 3-5 years 30.1
25 - 6 to 10 years 17.1
17 - 11 to 15 years 11.6
7 - 16 to 20 years 4.7
4 - 21 & over 2.7
Approx How Many Physicians Seen (while seeking a diagnosis?) 153 answers
21 - 1 to 2 13.7
64 – 3 to 5 41.8
41 - 6 to 10 26.8
20 - 11 to 20 13
4 - 21 to 30 2.6
2 - 31 to 49 1.3
1- 50 and more .6
Sought Care from Alternative Practitioners? 155 answers
90 – Yes 58
65 – No 42
Type of Practitioner?
Participants able to pick more than one practitioner; while I tried to cover all possible options, I may have missed one.
12 - Acupuncture
9 - Nutritionist
3- Herbalist
8 - Massage Therapist
3 - Physical Therapist
2 - Psychiatrist
15 - Chiropractor
2 - Homeopath
2 - Spiritual Healing
(Total answers 59 out 155 or 38 % responded to the question.)
Was the Care Helpful? 153 answers
91 - Yes
62 – No
Do You Require Assistance Walking?
68 – responses 41.4
Devices used:
38 – Can 55.8 % of responses
6 - Braces/Crutches 8.8
8- Walker 14.7
18 –Wheelchair 26.5
Other Activities that require assistance?
(Respondents able to select as many as applied from this list)
46 – Shopping 27.7%
45 – Cooking 27.1
105 – Housework 63
53 – Bathing 40
24 – Bathroom 14.4
19 – Dressing 11
73 - Writing Checks 44
105 - Paying Bills 63
Do You Attend Social Occasions? 153 answers
109 – Yes 71
44 – No 29
How Often? 112 answers
21 - once or twice a year 18.7
60 -Several times a year 54
10- Monthly 9
13 -Twice a month 12
8 - Weekly 7.
Employment (outside the home) participants not limited to one category
20 - Employed full time
31 - part-time
41 – unemployed (seeking work or considering seeking work)
11 - doing volunteer work
6 - seeking employment
21-not seeking employment
57 -on permanent disability
What Disability Have You Applied For? 105 answers
(question did not apply to all participants; some who specified that they had worked more than 40 hours every week in the home.)
24 - In the process of applying for
15 -Have been denied disability
17-Have gained LTD (private policy0
1 -Has been denied LTD “”
3 -Has gained STD
0 -Have been denied STD
8-Have gained SSI
4 -Have been denied SSI
24-Have gained SSD
5 Have been denied SSD
2 -Has Gained workers comp
2 -Has been denied worker comp
Has FMS Been A Factor in Career or School? 160 answers
143 –Yes 89%
17 –No 11
Has FMS Been Factor in Your Decision to Change:
Jobs- 109 responses
93 - yes
16 - no
Schools- 45 responses
27 - yes
18 -no
Careers- 66 answers; 56 -yes
10 -no
course of Study-
16-yes
14 -no
Have You Asked Employer/School for Reasonable Accommodation?
(More answers than those working outside the home at time of the survey. Many answers may reflect actions and attitudes at previously held jobs.) Total answers138
56-yes
82 -no
Were Needs Accommodated?--- 70 answers
29 -yes
41 -no
Have You Changed Careers? 151 answers
94 –yes 62%
57-no 38%
Was Earning Capacity Affected? 126 answers
116 –yes 92%
11 -no
Were You Able To Earn; 111 answers
7 - Higher Salary 6%
94 -Lower Salary 94
Women Only
Have You Experienced the Following;
Infertility- 113 answers
25-yes 23%
88 –no 77
Miscarriage- 115 answers
37 –yes 32%
78 –no 68
(71 Miscarriages indicated)
***(start here)
Did You Achieve Live Birth?
68 –yes 89 answers
21 -no
Infrequent or Scanty Periods?
47 –yes 68
21 -no
Heavy Menstrual Periods
105 –yes 127
21 -no
Unusual Clotting
106-yes 126
20 -no
Loss of Sex Drive
29 –yes 43
14 -no
Men Only
Have You Experienced the Following?
Hair Loss
3 -yes
8-no
Erectile Dysfunction
3 -yes
8-no
Problems with Urine Stream
2 -yes
8 -no
Decline in Sex Drive
5- yes
5 - no
Sleep Disorders
10 -yes
1 -no
Has FMS Affected Your Ability to Father a Child?
2 -yes
7 -no
EVERYONE
Check all that you've experienced
Brain Fog (100 % agreement on this issue)
166 -yes
0 -no
Indicate Frequency 154 answers
5 -Once a Week
25 -2 to 3 times weekly
109 -Daily
16 -2 times daily
You Have Trouble with;
127 -Math
111 -Keeping Appts
129 -Following Directions
119 -Giving Directions
126 -Driving
126 -Losing Items
146 -Beginning A Task
136 -Weight Gain
41 -Weight Loss
103 -Leaving Items
94 -Missing Appointments
151 -Concentrating on Tasks
Have You Been Diagnosed With-
102 –IBS 61%
114 –Allergies 69
61 -Bladder Infections 36.7
60 -High Cholesterol 36.1
77 -Muscular Tics 46
12 -Seizure Disorder 7
71 –Osteoarthritis 43
48 -Low Thyroid 29
136 -Sleep Disorder 82
73 -Asthma/Breathing Problems 44
100 –Migraines 60
133 -Back/Spinal Problems 80
116 –Depression 70
104 –Anxiety 63%
Does FMS Require You to Spend More Time on Personal Care? 161 answers
(2 indicated that they did not understand the question)
134 –yes 83%
27-no 17%
Do You Have Health Insurance? 161 answers
151-yes 94%
10 -no 6%
Are You Under the Care of a Physician? 155
147 –yes 95%
8 –no 5%
What Insurance Do You Have? 142 answers
10 – None 7
20- Medicare 14%
3 - Medicare/HMO 2
5- Medicare/Medicaid 3.5
29 Private HMO 20.4
60- Other Managed Care 42
15 - Traditional Indemnity 10.5%
Do You Have a Primary Care Physician?
166 -yes
0 -no
If yes, what specialty? 161 answers
(Participants checked more than one answer. However the overwhelming majority are relying on their Family or General Practitioner (97). Since many of the participants answered that they do have access to specialists, this seems to be a choice. )
64 -Internal Medicine 39.7%
63 -Family Practitioner 39.1
34 -General Practitioner 21
0 -Pediatrician
Do You Have any other specialty that you use? 101 answers (63%)
Do answers indicate the specialists that patients see most often? Frequency of visits would impact answers.
63 –Rheumatologist 62%
19 –Gastroenterologist 19
19 -OB/GYN 19
Does Your Physician Refer You To Specialists? 154 answers
141 –yes 91.5%
13 -no 8.5
Refer You to Physical Therapy? 147 answers
94 –yes 64%
53 –no 36
Make Referrals Hard to Obtain? 135 answers
25 –yes 18.5%
110 –no 81.5
Allow the use of Physical/Massage Therapy? 140 answers
87 –yes 62%
53 –no 38
How Often Do You See Your Physician? 159
29 -Once Monthly 18.
27 –Quarterly 17
3 -2 Times Yearly 2
100-Whenever needed 63
Does Your Physician Keep Abreast of FMS Research? 147 answers
87 –yes * 59
60 –no 41
(of these 31 indicated that they keep their physician current on FMS research)
Does Your Physician Support Alternate Therapies? 151 answers
105 –yes 70%
46 –no 30%
Check What They Recommend; (Respondents indicated more than one.)
54 -Herbs
97 -Vitamins/Minerals
20 -Magnets
38 -TENS Unit
0 -Interferential
19-Electro-STIMS Unit
68-Massage
24-Biofeedback
51-Meditation
Other-See attached
If Physician Doesn’t Recommend Supplements, Do You Use Anyway? 89 answers
52 -yes
37 -no
Check all you use;
45 -Herbs
41 -Vitamin/Mineral
12 -Magnets
11 -TENS Unit
1 -Interferential Unit
3 -Electro-Stims Unit
35-Massage
11-Biofeedback
23-Meditation
Other See attached
Check All that is Helpful
32-Herbs
44-Vit/min
8 -Magnets
11 -TENS
1 -Interferential
2 -Electro-Stims Unit
40-Massage
5 -Biofeedback
19-Meditation
Ethnicity (This was an optional question, but everyone answered it.)
2-Native American
5-Caribbean
7-Bi-racial
146-Caucasian
10 African American
2-Other (self identified 1 Asian-American, 1 Middle Eastern-American
Anne-Marie Vidal, 2002.
Alternative Health Care “I am willing to try just about anything.”
The responses in this section strongly indicate the responsibility FMS patients are taking for their own care and the diligence with which they pursue health. This has had varying responses as some patients feel that certain approaches wasted their time and money and some were unintentionally humorous. (“I ate raw garlic sandwiches for two weeks, even my family was avoiding me.”) Most of the physicians patients consult are keeping abreast of FMS research but over a third of those are doing so because of the patients’ role in providing research material. However the fact that a disturbing 36% of physicians treating this sample are not following research does not bode well for the care that some patients are receiving.
Over all many (70%) patients’ physicians support their use of alternative therapies. The four most common complementary route recommended by physicians are vitamin/mineral supplements (54%), massage (41%), herbal supplements (33%), and meditation (31%). Physicians seem to be recommending these to patients in various combinations.
Thirty-one percent of patients use complementary treatment despite their physicians’ disapproval. Of those patients the preferred choices for their enhanced care were again vitamin/mineral supplements, massage, herbal supplements and meditation. The survey allowed selection of several means of alternative therapies. The least popular were interferential unit, electrical stims, TENS, and biofeedback.
Respondents identified Vitamin/mineral supplements, massage therapy, and herbal supplements as the most helpful.
For the Future
I have never been sure of the reason that I felt the overwhelming need to quantify the affects of this disorder on our lives; I just felt it. It has never been my intention to minimize or over dramatize our situations. Reading the data repeatedly, I realized that the drama is there—it is in our lives and in this mystery that medical science has not yet solved.
In closing, I want to add some comments that participants made on their surveys: Read them to a doctor or to an elected official.
"Have trouble sitting for more than 30 minutes at a time so I don't get out much."
"I can't drive and have to use a walker to walk and hold on to for support. I can cook occasionally when I'm having a relatively good day. Need help to clean the house. Can shop only with help. Showering is impossible because I can't stand up. Bathing and dressing is a several hour process that exhausts me. Don't attend social events since I can't get there myself. My energy level only maintains for an hour before I've got to rest."
"It's terrible...I'm always afraid I will forget what I'm saying or stutter or drool or fall down for no good reason, which I've done all these things before."
"When I have strength to do more, I try to."
"Do you have any comments or directions that you'd like to see Fibro research pursue?"
"More research in the implications of mycoplasmal and viral infections as precipitating and perpetuating agents of FMS."
"I think the antidepressants cause more problems then they cure...concentrate on what causes FMS, not dealing with the symptoms."
"I'd like someone to wake up the AMA."
"Antibiotic therapy."
"Educate physicians."
"All of the symptoms of FMS have organic roots. There's an unusual reluctance by the medical establishment to face this (disorder). A simile would be the medical professions' reluctance to embrace a bacterial origin for stomach ulcers, simple, treatable, yet opposed tooth and nail for 30 years, because of the unmitigating gall of doctors who were miffed that it could be something that simple."
"Find out if it's a virus, or injury related and stop telling us it's 'all in our heads' and guess what? Our heads hurt too!"
"There's a need to put FMS under a different classification than arthritis/Rheumatology."
"A test needs to be developed to establish FMS as a disease."
“…I am still married, but I do think FMS is a big stressor on marriage.”
“There is no doubt how much family interactions effect the person with FMS. It also stands to reason that any chronic illness affects the entire family. In my years of nursing, I saw this time and again. The patients with family support were better equipped to cope with their illness.”
I personally feel that fibromyalgia is the "litmus test" for men; it quickly weeds out the ones that are going to run like H--- from the ones that are worth bothering with! I do acknowledge the problems that we all deal with in regard to meeting the needs of our children; it is something that those of us with families must deal with. It is hard and an area where we need all the help we can get.”
“It bothers me when people think that I would NOT want to be involved in my children’s school activities more. Mothers with FMS face a lot of distrust; people think we don’t care enough about our kids activities.”
“I lost my job, my husband, and my children are estranged.”
"Are there any special services that you need because of fibromyalgia?
"Affordable massage treatments, and access to chlorinated heated pool for water therapy."
"Cheap home assistance."
"Financial aid and good chairs to sit in."
"Keep support groups limited to 10, and grouped according to sensitivity."
"Transportation, as I can't drive, and a housecleaner."
"Handicapped parking tags and elevator access."