Must Have Books
How You Can Help
FMS Community Newsletter #86
|FMS Community Newsletter #86
|Health Care Providers. Do What's
Best For You.
Ok, tell me if this sounds familiar to any of you. I grew up in the 70's, I was an active teen who played tennis,
basketball,danced, swam and more. Then, I found myself sitting out, more and more when my peers got together. Maybe my
back hurt, or my arms. Maybe I had an unexplained headache or bout of fatigue.
As I got older, I worked for a living and started a family. I had a husband and two children. My life spiraled out of
Sleep eluded me most nights, if I slept 3 hours in a row I counted myself as lucky. I was dead tired, fatigued at
work, just getting up to move, took some major motivation on my part.
I had chronic neck pain, migraines and my arms would go numb during the day.
I found that strong smells, lights or noises could cause pain, nausea and stress.
Some days, my muscles would feel numb, yet burn at the same time, if that makes sense. Other times, my muscles felt so
hard I called them cement muscles.
I went to doctor after doctor. I went to the emergency room when my headaches were so bad I wanted to die. I told
specialists that my leg would quit working and I would fall over.
They ran test after test, telling me I did not have MS, my spine was ok and there were no tumors in my head and my
nerve function fell in the normal range.
In their words, I was fine!
Some of these health care professionals put me on anti-depressants. They asked me if I felt I was depressed, had I
been abused as a child, did I think about suicide!
Well, NO! I was depressed, but only because I wanted to live my life and my body was betraying me at every turn.
Depression was not causing the pain.
My life did change. It took 20 years, but it happened. My employer was changing insurance providers and I had to pick
yet another primary doctor. I was so sick of trying doctors that I took a paper clip, unbent it and used it to stab a
name in the provider book.
The paper clip landed on Dr. Dorothy Lindes. She not only believed me, she had FM herself. I had a diagnosis, I was
shocked, I cried. It was to good to be true.
I am on medication I have experimented with, that works for me. I now sleep at least 7 hours a night and my pain stays
pretty low most days.
I swore that I would do what I could do, to insure that others in my situation did not have to wait 20 years to find a
caring doctor. I, and my partners her on this site vowed to get the names of care providers that believe in, and treat
FM into the hands of those who need them.
If you are seeing a great doctor who has helped you, please feel free to send their contact information to us, we will
add them to the list.
Don't give up! Help is out there.
We have a new contributor to the Community Newsletter. Betsy Jacobson is an FM Survivor who has dedicated her life to
gathering one of the largest data bases of FM friendly doctors in the world. She spends countless hours keeping her
data base current. She takes requests for care providers via email and helps every person she can hook up with a
caring health care provider. Betsy is also a writer who has a new cookbook coming out. We are proud to publish her
current article that she has graciously given us the rights to use in this edition. Thank you Betsy.
~ Physician Assistants (PAs) and Nurse Practitioners. (NPs) Filling an important need in the deliver
of health care. Author; Betsy Jacobson
~ How to Talk to Your Doctor
~ Before The Visit
~ Find a Good Doctor in Your Area
~ What type of doctor should I use?
~ Suprising results of our Care provider poll.
Physician Assistants (PAs) and Nurse Practitioners. (NPs) Filling an important need in the deliver of
health care. Author; Betsy Jacobson
In 2020, there will be a deficit of 96,000 physicians in the U.S.
Q: Who will help offset that deficit? A: Physicians Assistants (PAs), Nurse Practitioners (NPs) and other professional
physicians aides. According to Jerry Siebenmark of the Wichita Business Journal in June of 2006, PAs and NPs are
definitely filling the needs of the declining doctor population. The U.S. Department of Labor Bureaus Statistics
project that these 2 professions will grow much faster than the average of all occupations and that PAs numbers
will increase 49% to 94,000 by 2012.
The serious problem of physicians time constraints was addressed as early as the mid 60s when the
Physician Assistant and Nurse Practitioner professions were begun.
Eugene Stead, MD at Duke University Medical Center in NC, worked to fill the gap of primary care physicians (once
called internists and GPs) in 1965 by instituting a PA program at Duke to train people to deliver quality
medical care without the confines of a medical school. What has evolved are 136 accredited PA programs in the U.S. In
the same year, the University of Colorado instituted its first NP program as a research effort to fill in the gaps in
shortages of family doctors and pediatricians and to deal with escalating health care costs.
About Dr. Steads philosophy on medical education, his family wrote that the PA profession itself is a
reflection of his belief that it is possible to meet many patient needs without all the time and cost overhead of a
traditional medical education.  In fact, Dr. Stead spearheaded the revision of the Duke Medical School
curriculum in 1966 that halved the required basic sciences making room for a full year of research without adding to
the amount of time a student spent in medical school. He thought that medical schools had too many courses which
doctors forgot anyway,PAs are professionals who are licensed to practice medicine with physician supervision,
and while they have close working relationships with physicians, they may practice without the doctors presence.
They, in fact, perform most of the same functions as a physician. They do physical exams, diagnose and treat
illnesses, order and interpret tests, counsel on preventive health care, assist in surgery, and they can prescribe in
49 states plus Washington, DC and Guam. (California refers to scripts written by PAs as written prescription
Over 50% practice as primary care providers, 19% are in surgery, and they all work in a variety of settings - in the
hospital, in the private medical office, in managed care organizations, long term care facilities, student health
services and urban and rural clinics. There are about 50,000 practicing PAs today. Admission requirements to a
PA program include 2 years of college and some health care experience. Most PA students have BAs or BSs
prior to admission. A variety of degrees are awarded to the PA candidate. 102 programs award a masters degree,
24 - a bachelors degree, 4 - an associate degree and 6 award certificates.
Since PAs are trained in the medical model, their course work is similar to that of the physician, and they work at
least 2000 hours in clinical rotations over a period of 12 months in internal and family medicine, surgery,
pediatrics, OB/Gyn, emergency medicine and geriatric medicine. Moreover, theyre required to fulfill 100 hours of
CME (Continuing Medical Education) every 2 years in order to maintain their national certification and be re-certified
every 6 years. These CME requirements are the same as they are for most physicians in the U.S.
PAs and NPs perform basically the same functions. The NP, however, has different training. S/he has a graduate degree
in nursing. While still in school, NPs usually choose their specialty in which they do a clinical rotation of 650-750
hours. There are between 103,000 - 115,000 in practice today. In most states they do not have to be supervised by a
physician and may practice independently. NPs Continuing Education (CE) requirements vary from state to state
but most require 30 - 50 CEs per 2 year period for re-certification. Exams are often given within the medical
specialty of the NP.
Sharon Kulesz, PA who was a practicing PA and is now Director of Alliance Development & Education, American
Academy of Physician Assistants, used to treat PWFM in the appropriate multi-disciplinary model. Her knowledge of FM
is clearly very sophisticated. Sharon said that the value of a PA is that s/he can cut through medical jargon,
translating what a doctor may have said, takes more time to work with the patient on a more personal basis, and
answers patients questions in a less threatening environment. Sharon favored her [required] connection to the
physician, since it gave her a chance to share information and ideas with her sponsoring physician. She said that NPs
are trained more to look at the social climate and the psycho/social model.
In some practices, she told me, a doctor sees the patient for the initial visit first then refers the patient to the
PA, but in her practice, the patient sees the PA first, discusses her/his history, etc., then sees the doctor and is
given a choice of whom s/he would like to see thereafter - the PA or the physician. This was often done on the same
Are PAs and NPs the only professional group of physicians assistants so ably helping patients today? No. Among
other sub-specialties is the COA or Certified Ophthalmic Assistant who, after working in an Ophthalmologists
office is sponsored by that physician for a one year in-office training, studies a manual provided by the Joint
Commission on Allied Health Professionals in Ophthalmology, (JCAHPO) is tested by that organization in order to be
certified, must meet its stringent requirements and will be re-certified every 2 years after completing 12 Continuing
Education credits and passing an exam. 4
There are many more specialties which arent covered here for reasons of space, but the importance of these
professionals in the medical arena is clear.
1. Eugene A. Stead, Jr. A life of chasing what I did not understand; Obituary written by his family
2. Other information about PAs was taken from web sites of the North Carolina Academy of Physician Assistants
and The American Academy of Physician Assistants, Seton Hall Physician Assistant Program, Mercy College Physician
Assistant Studies, and from interviews with Catherine M. Nowak, MS, a PA in Emergency Medicine at Danbury, CT Hospital
3. NP info is from emailed interviews with Mary Jo Goolsby, EdD, MSN, NP-C, FAANP, Director of
Research and Education, American Academy of Nurse Pracititioners, Kathleen Dracup, RN, FNP, DNSc, Dean and Professor,
School of Nursing, University of California at San Francisco, 2/06/02.
4. Becky McKee, COA, Danbury, CT.
How to Talk to Your Doctor
You took the first step by calling for that first appointment with a new doctor. How do you prepare? How do you
present your symptoms in a manner that does not make you look like a drug seeker? We will offer some tips here on what
you can do to make that first visit easier.
Start a pain diary. Journal your day to day pain. List the intesnsity of the pain from 1 to 10, with 10 being the
worst pain ever. List what part of the body it it was in. List what you did before the pain began. List how long it
lasted, what you did to try alleve the pain and whether it worked or not. Make sure you include things other than
pain, like body weakness, fatigue, headaches, numbness, tingling, cement hard feeling muscles.
Give the doctor a written report on your sleep patterns. Do you sleep for 4 hours and wake up in pain? Do you fall
asleep and wake up with restless legs and have to get up to get relief? Do you sleep for 7 hours and still feel
fatigued the next day as if you haven't slept for days?
On your first visit, provide the doctor with a typed page listing all of your symptoms in order of importance.
This page of typed symptoms should be clear, to the point and easy for the doctor to get a quick handle on what you
are dealing with.
An example page could look like this;
1) Lack of sleep. I sleep for 4 hours a day.
2) Migraines 3 to 4 times a week.
3) Shoulder pain, upper arm weakness. Constant
4) Daily fatigue. I have to fight with myself
to brush my teeth or take a shower. Just doing
these tasks leave me shaking and in pain.
You get the idea. List the main problems first.
Give the doctor a short bio of what you have done with your life. If you worked a full time job, redecorated your own
house and played tennis three times a week, tell them. Then tell them that you can no longer do any of these things.
Let them know how much this condition has impacted your life.
Be organized. Keep a health file with pertinent studies about FM. Put copies of the items you shared with your doctor
in the file. List pertinent books, studies and resources for them to look over. Let them know you are taking charge of
your health and that you will not accept a simple it's all in your head answer. Perhaps they will read your file,
check out the information and realize they can help you if they open up their minds.
If possible, take copies of your medical records and the results of all tests you have taken to your first visit. Show
them that you have already taken all the usual tests and things like MS have been ruled out, time and time again.
Write or type out all the tests that you can remember taking and what the results were. Put the facts in their face.
When you want to try a new therapy, bring a typed page listing all of the following:
* All of the medications you have used or are currently using
* Specify the dosages and frequency of use
* Describe any and all side effects caused by the medicines
* Estimate how effective each medicine was at symptom reduction
* List any alternative therapies that you have been using.
Before The Visit
Organize ahead of time
Keep a list on the refrigerator, by your bedside, or in your purse. Jot notes about symptoms or questions as soon as
they arise. A day or two before your visit organize your notes. Be as specific as possible. For "my arm
hurts", you might describe the problems holding your arms up for hair drying, lifting children, or hanging
laundry. Highlight the items that are particularly worrisome.
Read the entire aricle at; http://www.anapsid.org/cnd/diagnosis/canwetalk.html
Get a Referal to an FM friendly Doctor in Your Area.
Are you newly diagnosed, do you have to change doctors due to changes in your health insurance, or do you just want a
better doctor who can help you? There are resources out there to help you. Dedicated people, the majority of them
living with FM and other conditions, who keep track of doctors all over the U.S and the rest of the world. They
compile this data and strive to get it into the hands of those who need help.
This section of the newsletter will address some of those resources. Please remember that the people you may contact
are sick themselves. Give them adequate time to read their email and respond. They have bad days just like you.
* The first resource listed is our own Fibro Betsy. She has been maintaining her large data base of Fibro friendly
doctors for years. She stays on top of current events and does not hesitate to boot a doctor from the list if they
stray or turn out to be less than helpful.
Betsy works via email. Send your location and other towns you would be willing to drive to for help. She will respond
as quickly as she can with the name and contact information of a trusted care provider near to you. Please be exact,
do not just ask for a doctor in Montana, give the name of your town and neighboring towns you can easily drive to.
Send enquiries to email@example.com
*Co-Cures Good Doctor List
A collection of listings, of doctors who have been recommended by and for CFS/CFIDS/FM patients. The physicians are
listed on separate pages by country and state/province/region and, within each page, by city.
Co-Cure states that they do not verify all of the doctors on the list. All doctors are recommended by patients who
have used them and were pleased by their treatment. http://www.co-cure.org/Good-Doc.htm
* Devin Starlanyl's Care Provider List. Some of these doctors are knowledgeable in the fields of FMS and CMP. Some are
simply willing to listen and support their patients. This information comes from many sources. This list is an attempt
to help people find doctors and other health care providers and supporters who have other FMS and/or CMP patients whom
they have cared for in an appropriate and kindly manner. Any patients might have a bad experience with one doctor. We
hope this list will grow, as we believe that everyone has a right to competent health care. http://www.sover.net/~devstar/provider.htm
* Resources in DC, VA, and MD have good doctors and other practitioners familiar with chronic fatigue syndrome (CFS,
CFIDS) and fibromyalgia (FM, FMS). Recommendations come mostly from our support group members. The order within each
specialty is roughly based on the popularity, helpfulness among the people we hear from. This page lists CFS/FM
Specific Programs, internists, family doctors, pediatric and adolescent specialists, and how to find more health care
*Doctor Directory.com. We are unsure if doctors are allowed to self-refer themselves to the list. But it is a place to
start. We suggest you contanct online and local support groups if you have any questions about a doctor you may be
interested in. Type their name in a search engine to check for documented problems, such as malpractice or sexual
* The NFA (National Fibromyalgia Assoc. maintains a list of care providers that have been submitted to them. We must
warn you that doctors and staff are able to refer themselves via email, not all of those listed have been refered by
patients who have used them and trust them. Again, do an online search to make sure they are on the up and up and ask
them question on your first visit. Ask them if they truely believe in FM and how do they treat it. http://www.geocities.com/mistysc_2000/find.html
* A Listing of Bay Area Practicioners Specializing in CFIDS and FMS
What type of doctor should I use?
One of the biggest myths about Fibromyalgia Care providers is that you need to see a neurologist for this condition.
Some neurologist believe in and treat FM and CMP, but many of still refuse to accept it as a viable condition.
Don't lock yourself into any one doctor or specialty. Help comes from many areas if you find an educated person.
I myself saw every type of specialist in my area, neurologist, osteopaths, endo's and more. I ended up getting my
diagnosis from a general practicioner.
We hear story after story at the organization of people who found the most help with a general practicioner. We hear
of people who go to a chiropractor and get diagnosed and that doctor steers them to needed help.
I even read email from one person who went to a foot doctor to have her toe nails trimmed. When she told the doctor
why she could not put her leg in the position he had asked for, he sat back and asked her questions. He ended up
sending her to a local GP who treated FM patients.
The moral of the story is, do not cling to titles or specialties. A neurologist may help you or a general practicioner
may help you.
Keep your eyes and ears open and you will find a caring doctor who believes in you.
Suprising results of our Care provider poll.
We have been running an on going poll on the website, visitors were asked how they felt about their health care
provider. I have to say, I was pleasantly surprised by the results. Having come from a generation when FM was not
talked about, and doctors were uneducated and didn't believe in FM, I expected the poll to reflect this opinion.
The results were surprising, it gave me a ray of hope to see that there are many doctors out there who are actually
helping people live with FM.
The results are not perfect, it shows that more people
are are finding help, than those still searching. It also shows that a larger percentage of doctors are treating FM
now, many more than when I was searching for a diagnosis years ago.
We have a long way to go, I would like to see the number of satisfied patients rise.
Here are the results from the poll:
* Do you Completely trust your doctor? The three choices were - Completely trust, Somewhat trust, Staying on guard.
This category took 66% of the vote.
* The next category was: Unsatisfied, Don't trust at all. This category took 34% of the vote.
We will continue to educate patients and care providers alike. Our goal is to see numbers like this shift in favor of
patients being satisfied with their level of care.