AMFRI FAQS
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FAQS Part 1, Things you Should Know (updated 1/2004)
WHAT IS FIBROMYALGIA SYNDROME?
Fibromyalgia is a painful disorder that affects 2-6% of the population.
Primary symptoms of fibromyalgia are widespread aching of the muscles and
connective tissue, fatigue, and stiffness (especially acute following any period
of inactivity, such as sleeping or sitting). Other common symptoms include
muscle twitching, muscle spasms, numbness of the arms or legs, poor and/or
disordered sleep, cognitive impairment and confusion (known as brainfog or
fibrofog), depression, anxiety, irritable bowel and bladder syndrome, Reynauds
Syndrome, hypo-thyrroid, allergies, dry eyes and mouth, chemical sensitivities,
heightened sensitivity to noise, light, touch and variations in temperature;
distortions in vision and loss of hearing; reactive hypoglycemia, migraine
headaches, ringing and itching in the ears and weight gain. These symptoms vary
from person to person, and wax and wane in severity. Fibromyalgia affects more
women than men, and is seen in children and adolescents.
There is currently no cure for Fibromyalgia, and no standardized treatment
protocol.
WHAT CAUSES FIBROMYALGIA?
There is some evidence that points to Fibromyalgia having a possible hereditary
component. There are studies in progress trying to find the cause and if there
is a hereditary factor. One study indicates that fibromyalgia may be an issue
with the way the brain communicates via the central nervous system.
In individuals predisposed to the syndrome a health event such as a flu-like
illness or a physical trauma is most commonly thought to trigger the onset of
acute or debilitating fibromyalgia symptoms. It has also been thought to strike
after a period of prolonged stress or emotional trauma. Researchers have not
found a single or pathological cause, which in turn causes confusion and
hostility in some medical professionals who refuse to recognize fibromyalgia as
a disease, often referring their patients for psychiatric evaluation. Many
fibromyalgia patients report the presence of a milder version of their symptoms
long before a health event triggers the onset of acute symptomology, but some
were the picture of health.
Fibromyalgia is not a psychological disorder, nor is it a catch-all waste-
basket" diagnosis. It is considered a disease by the World Health Organization.
HOW IS FIBROMYALGIA DIAGNOSED?
A physician makes a diagnosis of fibromyalgia by checking for the characteristic
tender points. Although many general practitioners can do this test, it is
most often a Rheumatologist who makes the definitive diagnosis. If 11 of the 18
tender points are painful when pressed, and symptoms have been present for three
months and in more than one body quadrant, the diagnosis of fibromyalgia can be
made.
The diagnosis is bolstered by the presence of other, common complaints
attributable to fibromyalgia. A Rheumatologist is commonly consulted to confirm
a diagnosis of fibromyalgia because the syndrome can easily be mistaken for or
co-exist with other conditions in his specialty such as arthritis, lupus,
chronic fatigue syndrome or other auto-immune disorders. Although the care of
persons with fibromyalgia is often referred to Rheumatologists, there is little
difference between the long-term care one can receive or have coordinated by a
knowledgeable and sensitive family doctor and the more expensive rheumatological
specialist. Under no circumstances is fibromyalgia self-diagnosed. Your health
care provider should run a series of other tests using modern body imaging
equipment and blood analysis to rule out other serious diseases (including
thyroid dysfunction) that have similar symptoms.
I'VE BEEN DIAGNOSED - WHAT DO I DO NOW?
Don't panic. Fibromyalgia is not potentially disfiguring like arthritis. It is
not progressive in the sense that it constantly worsens and leads to death (like
cancer). Some people do experience a worsening of symptoms. Some do not.
Muscle weakness and atrophy can occur due to inactivity. When fibromyalgia is
treated successfully, you may experience improvement in symptoms or remission (a
temporary absence of symptoms). There is no known cure, and a treatment that
works for one may do nothing for another. Often you can regain some quality of
life when you find treatments that work for you.
WHAT KIND OF DOCTOR SHOULD I SEE?
Although rheumatologists are currently considered the specialists of choice,
this is more by accident than by training. By far the most important factors to
consider in choosing your primary or coordinating health care provider are: 1)
does he believe in it?--some doctors do not! 2) is he willing to keep up to
date with the syndrome, either on his own or by helping you evaluate new
information you may bring to his attention? 3 )is he open to a wide spectrum of
modalities and treatments? (remember--some people do not respond favorably to
any drug therapies and must look outside the traditional approach); 4) perhaps
most importantly--does he believe your complaints are of an organic nature (not
All In Your Head, or AIYH). If your doctor or health care provider fails any of
these tests, you should seek another provider.
FAQS Part 2, Things you Can Do (Updated 1/2004)
SLEEP
Getting adequate stage four (deep or Delta wave) sleep will do wonders for
patients with fibromyalgia. Your body needs this "quality sleep" in order to
repair itself. Most people find a reduction in pain and other symptoms when
optimal sleep is achieved. Unfortunately, one of the syndrome's annoying
symptoms is inability to achieve Delta sleep. Sleep studies consistently show
that even for patients, who sleep through the night without interruption, there
is inadequate deep sleep. Physicians routinely try low doses of
anti-depressants (often in combination with muscle relaxing drugs) to help, but
this helps only some (likely those whose sleep disorder is aggravated by
depression or anxiety). Many fibro patients swear by Ambien (a non-Delta wave
suppressing sleeping pill), however many good physicians are reluctant to
prescribe it long term because of potential dependency and tolerance problems.
St. John's Wort, Kava kava, chamomile, Valerian root extract, 5htp, Benadryl,
inositol, choline and Melatonin are some alternative over-the-counter
supplements that have been beneficial to help some people sleep better.
Before trying any remedy that is over the counter-please check for possible
interactions. For example, St. Johns Wart is an SSRI-so you should not take it
with other SSRI antidepressants or with seratonin precursors. Kava Kava is a
seratonin precursor-so you should not take kava kava and SJW. Never take
additional substances that affect the same neurotransmitter system that you
already have medication for.
Narcotic pain relievers in general inhibit the deep sleep cycle, although
occasionally a physician may feel a patient's pain level warrants narcotic
relief. Mild exercise also enhances the ability to sleep. Finally, some
patients with fibromyalgia have unrelated sleep disorders, such as restless legs
syndrome and sleep apnea, which require specific diagnosis and intervention.
EXERCISE
Exercise is crucial, but strenuous repetitive exercise is a no-no. Start out
slowly at first, five minutes if need be, and gradually increase your exercise
time. Gentle aerobic exercise is recommended. Walking, the use of stationary
exercise equipment, and warm water exercises are the preferred forms of
exercise. Gentle stretching is important to keep your muscles loosened and
relaxed, and should be performed throughout the day.
Hip pain is very common in bedridden patients (and can be quite severe) so
exercise should be performed any day you are not absolutely bedridden. Most
fibro patients are fatigued by exercise rather than invigorated, so evening
exercise may be preferable to morning efforts, especially if you are working.
Whatever you do, find a way to move and stretch each day. Even if it is only a
few minutes at a time. Some find that stretching out in bed before you get up
also helps ready your body for the day ahead and relieves the compressed feeling
often felt upon awakening.
NUTRITION
Hypoglycemia, gluten intolerance, yeast overgrowth and food allergies are some
of the nourishment challenges we can face. Complicating this is Irritable Bowel
Syndrome--a condition where excess gas, diarrhea and constipation abound, normal
bowel movements are a rarity, and the ability to eat fibrous foods practically
nil. To top it off, there are myriad conditions of the bowels that go
undiagnosed and fail to receive proper treatment. If you have bowel problems,
discussing it with your healthcare provider is mandatory. Specific advice may
be requested from knowledgeable newsgroup members who may be able to point out
things a physician may overlook.
SUPPLEMENTS
There is potential for nutritional deficiency, especially in fibromyalgia
patients who exhibit symptoms of IBS or other gastrointestinal distress. A
multi-vitamin supplement is a good idea. Some doctors suggest megavitamin
supplementation. Many patients have noticed improvement upon taking
Calcium/Magnesium or Magnesium/Malic Acid supplements (calcium and magnesium are
involved in the muscle contraction/relaxation process).
Sometimes relief is enjoyed for a while, but the symptoms alleviated return
later despite supplementation. Also, there are many nutritional quacks running
around trying to make a buck off your search for relief, especially on the
Internet: It is always a good idea to run a new product by fellow newsgroup
subscribers to solicit feedback on availability, price, value, side effects,
etc. It is also wise to inform your doctor(s) of everything you are taking.
Many over the counter supplements can affect the way prescription medications
work.
Always try one thing at a time-using an adequate dose and giving it adequate
time to work or not to work. This way you can more readily conclude what works
for you and what does not.
LIFESTYLE CHANGES
Your life as you knew it has changed. You must accept this to come to terms
with your illness. You can't do everything you used to do. You must learn to
say "no," when your body will object. Dealing with chronic pain often leaves
one mentally exhausted and irritable. Do what you can to avoid stress--as a
person with a chronic illness, you are subject to many stresses that are not
experienced by the average person. Don't take on stressful projects or
responsibilities you can avoid. You must learn that it is okay to indulge
yourself in ways you never would have as a healthy person (like lying down to
rest in the middle of the day, or spending a day in bed).
The house and yard work may suffer. Outings and socializing may be limited.
Shopping may have to be divided into shorter trips. If you are unable to
continue to work, you must accept both that your value as a human being is not
diminished by that fact, and that you will have no choice but to accept the help
of others--family, friends, neighbors and government. Remember--you were always
willing to help others-- now it's your turn to accept their help. Many of us
refuse to accept the status of being disabled long after we should, and continue
to look for 'suitable' employment, which often times does not exist. The
process of being awarded the Social Security disability (or private insurer)
benefits to which you are entitled if you truly can't work can be arduous for
some. It is best to apply as soon as you realize you're disabled (before
savings and assets are depleted), so long as your health care provider will
support your claim (and if he won't, find one who will).
Some people are able to continue working with work accommodations. Others have
stopped working and by working on their health issues have gotten well enough to
enter the job market again. And some people will never work again.
Fibromyalgia affects each of us in different ways.
MANAGING A FLARE
Listen to your body. Know, or learn, your limits. When a flare (temporary
worsening of symptoms) strikes, be ready to give in to your body's need to rest
and repair. Stress or cumulative lack of sleep can precipitate a flare, as can
other factors. Many people find if they give in and stay in bed during a flare
that its duration is much shorter. Very gentle stretching may help, but often
people in flare-ups are incapable of any exercise. Cut the guilt--you didn't
ask for this.
Take any pain medication prescribed-in a manner that you keep ahead of the pain.
If breakthrough pain occurs, contact your doctor.
alt.med.fibromyalgia.recovery.info (moderated)
FAQs Part 3, Links and Miscellaneous (parts updated 1/2003)
Chronic Myofascial Pain (formerly known as MYOFASCIAL PAIN SYNDROME)
Many people who have fibromyalgia also have Chronic Myofascial Pain, which is a
different disorder (some doctors debate this view). In Myofascial pain
syndrome, trigger points occur throughout the body (as opposed to the tender
points of fibromyalgia). .When disturbed, these trigger points cause a pain that
often radiates away from the point or origin, such as a point on the shoulder
radiating down the arm. Many people find relief through a specialized massage
called myofascial release, performed by a knowledgeable physical or massage
therapist. Some ppl find relief with acupuncture. It usually depends on what
your insurance will pay for. Often people with Chronic Myofascial Pain have
hyper-mobile joints, creating a multitude of other problems. Stretching for
people with hyper-mobile joints can be devastating.
Please see the website of Devin Starlanyl, MD (link below) for detailed
information.
MEDICATIONS
Muscle relaxants, antidepressants and non-steroidal anti-inflammatory drugs
(NSAID) are the most common medications given to persons with fibromyalgia. Not
all drugs work for all people. Sometimes there is no effect at all. Sometimes
there is a slight lessening of pain. Some people notice considerable
improvement. A few (the unlucky) find little or no relief with any
pharmaceutical therapies. Many people with FM and/or MPS find they have the
opposite of the desired action of medications-so trial and error are a
necessity.
Many people find that over-the-counter generic acetaminophen (Tylenol) in high
doses does more for them than the more expensive NSAID's, which require a
prescription. Even Tylenol has its dangers-taken for a long time, liver
problems may occur. A minority of fibromyalgia sufferers have access to
narcotic pain relief. For some it is effective, for others no relief is
achieved. Muscle relaxants and antidepressants are notorious for causing
grogginess or sleepiness (especially in high doses), and NSAID's are hard on the
gastrointestinal tract. All medications given to fibromyalgia patients address
symptoms and not a root cause. This means that you will have to continue taking
such medications (if they work) indefinitely.
There are also advocates of alternative therapies, such as the guaifenesin
protocol, cortisol replacement, herbal regimens, thyroid replacement, etc.
Additional information on such treatments may be found on various websites and
through links listed below.
For more details, please see Marilyn K's Website (link below).
RECOMMENDED READING
Fibromyalgia & Chronic Myofascial Pain Syndrome, by Devin Starlanyl, MD
(commonly known on fibromyalgia newsgroups as "The Blue Bible," comprehensive
and highly recommended)
Foods that That Fight Pain, by Neal Barnard, MD
The Fibromyalgia Advocate, by Devin Starlanyl, MD
Fibromyalgia and Muscle Pain, by Leon Chaitow
Fibromyalgia: A Comprehensive Approach, by Miryam Williamson
The Fibromyalgia Relief Book: 213 Ideas for Improving the Quality of Life, by
Miryam Williamson
HELPFUL WEBSITE LINKS
The BEST article we have ever seen--it is ALL in this one article:
http://www.selene.com/healthlink/fibromyalgia.html
Devin Starlanyl's page:
http://www.sover.net/%7Edevstar/
Marilyn K's page:
http://web.tampabay.rr.com/lymecfs/
http://www.geocities.com/HotSprings/6028 (old site)
Steve Emerson's Alternative Treatments page(hosted by Marilyn Kerr):
(this site is currently down--we are trying to contact Marilyn)
http://www.geocities.com/HotSprings/6028/emerson.htm
Co-Cure page:
http://www.co-cure.org/
Managing Fibromyalgia: A
Non-medical Approach
(Miryam Williamson's page):
http://www.mwilliamson.com/
The Fibromyaliga Network (like a clearing house of informaiton and links and
research about FM)
http://www.fmnetnews.com/pages/basics.html
Guidance for Fibromyalgia Patients who are having Elective Surgery
http://www.myalgia.com/surgery%20guidance.htm
Dr. John C. Lowe (DC) theories (including thyroid)
http://www.drlowe.com/
Although this is a somewhat commercial site, done by Meyerland Chiropractic in
Houston, TX, the information on fibromyalgia, headaches and a few other related
issues is really easy to read and in plain English.
http://www.meyerlandchiropractor.com/
Over 2000 titles of abstracts going back to 1816 that deal with FM.
http://www.myalgia.com
Information from Dr. Paul St. Armand, regarding the Guaifenisin Protocol
http://www.csusm.edu/public/guests/nancym/fibromt.htm
http://www.guaidoc.com/
Mark London's Analysis of the Protocol
http://web.mit.edu/london/www/guai.html
Dr. Gatell on Guafenisin
http://drgatell.com/fm-cfids.htm
A rather dead ng--but there are a few people there.
news:alt.med.fibormyalgia.guaifenesin
Our FM/CFS World
www.ourfm-cfidsworld.org
Social Security
http://www.ssa.gov/
The Disability Benefits Information Website
http://www.cfids-me.org/disinissues/
Accommodating People with Fibromyalgia
Job Accommodation Network
A service of the U.S. DOL Office of Disability Employment Policy
http://janweb.icdi.wvu.edu/media/Fibro.html
1-800-526-7234 (V/TTY)
Patient Advocate Foundation is a national non-profit organization that serves
as an active liaison between the patient and their insurer, employer and/or
creditors to resolve insurance, job retention and/or debt crisis matters
relative to their diagnosis through case managers, doctors and attorneys.
Patient Advocate Foundation seeks to safeguard patients through effective
mediation assuring access to care, maintenance of employment and preservation
of their financial stability.
http://www.patientadvocate.org/
Drug Information:
http://www.rxlist.com/
British (UK) sites:
Action for M.E. Support Web:
http://www.afme.org.uk/
ME Support In the Midlands (United Kingdom):
http://freespace.virgin.net/me.support/
Myalgic Encephalomyelitis Association U.K.
http://www.meassociation.org.uk/index.htm
SSI & SSDI (USA)
Supplemental Security Income (SSI) is a government program for the indigent.
Social Security Disability Insurance (SSDI) is is a government insurance program
that you, your spouse, or your parents contributed to out of their wages. If
you are certified disabled, and eligible through qualifying contributions, you
will receive SSDI benefits. The amount of the benefit is based on your
contribution and whether you have any dependents. If you are certified disabled
and meet stringent income and asset guidelines (variable from state to state,
but total assets generally can't amount to more than $2000 in addition to
exemptions for your house and car), you will receive SSI. The amount of SSI is
dependent on your expenses and dependents, subject to guidelines for your area.
If you are awarded SSI or SSDI, your minor dependents will also get a stipend.
If you receive back pay, they will also receive back pay.
It is possible for a person who has qualifying quarters of employment, and
little assets to qualify for both SSI and SSDI. Contact your local SSA office
to find out what you are eligible for.
The eligibility requirements of disability for either SSI or SSDI are identical.
You must be certifiably unable to work for 12 consecutive months at any gainful
employment. Social Security will conduct its own investigation consisting of
review of all of your medical records and examination by their specialists.
This process can take from four months (rare) to four years (with multiple
appeals), with most review processes taking someplace between nine months and
two years. If you are over 50 years old, the process is quicker and you will be
eligible for enhanced SSA benefits when you turn 62. It is important to file as
soon as you and your doctor(s) "think" you qualify, or you could loose some
benefits.
Having to appeal an initial denial is not uncommon--be prepared. Money will not
be disbursed from either source until approval of the claim. In the case of
SSI, you will be covered for medical expenses including medicines (via Medicaid
or medi-cal (California only)) from the date of application to the date of
determination. If you apply for SSI, you should also apply for food stamps.
If you must depend on family or friends for financial support during the claim
review process, every source of income or support is important (especially since
food stamp benefits are never retroactive). You will not have to repay expenses
covered by Medicaid or foods stamps even if you are not certified disabled.
Medicaid co-payments are minimal, and many health care providers accept Medicaid
payments as full payment for their services.
f you receive food stamps, or Medicaid or Medicare, you should also investigate
any program your state may sponsor to help you survive. These include LIHEAP
(fuel oil assistance) Lifeline telephone assistance (a government rebate that
covers "basic" telephone service to your house), discounts on your electric bill
(usually company sponsored and dependent on usage and your income) rent or
mortgage or property tax rebate programs and many states also have a discount
prescription drug card. There is help out there, but it isn't all applied for
with one application to the Human Services Department.
If you are also eligible for SSDI and there is a retroactive payment for both
SSI and SSDI, your SSDI retroactive payment will reflect a deduction of the
amount you were paid under SSI, but no deduction for Medicaid care received or
food stamps. Despite this, it is beneficial to apply for both if you are
eligible--you will get immediate health care coverage and because the SSI
payment will be issued almost immediately after claim approval, whereas the SSDI
payment will take from several weeks to several months longer to process your
first payment. This can be crucial to your mental health if you've been waiting
for a year or more and living on borrowed money!
Retroactive payments accrue from six months after the date that the Social
Security Administration determines that you were first disabled. This may or
may not be the same date you and your doctor say you were disabled. If your
SSDI payment is high enough (the cut-off level varies, depending on the state)
your Medicaid coverage will convert to a 'catastrophic' coverage (with a
deductible of several thousand dollars per year). If you remain eligible for
SSI because your SSDI payment is too low to meet minimum subsistence levels for
your area, the Medicaid coverage will be better, and when you become eligible
for Medicare, the monthly premium will be paid for you.
You become eligible for Medicare (and your Medicaid benefits may terminate
completely, subject to the exceptions noted above) after two years (plus the six
month waiting period) from the date you were determined to first be disabled.
Medicare is generally more expensive than Medicaid, requiring monthly payments
for premiums (if you want "Part B," which includes doctors visits and tests), as
well as meeting an annual deductible and contributing co-payments for all
treatment. Medicare does not pay anything for prescription medicines
administered to outpatients.
The only exception is a Medicare HMO-where the co-payments are reduced to $1 per
month per prescription. Usually this occurs if you medically retire from an
employer who continues to provide health benefits via your retirement plan. And
in this case, dr visits either have no co-pay or a $5 co-pay per visit. Co-pays
will vary from HMO to HMO and from employer to employer-depending on the
contracts negotiated for the employers employees.
COPY RIGHT AND CONTACT INFORMATION
The FAQs posted on this news group are copy righted by the following persons:
Ronald Martin, Nancy Leitner
Copyright 1999/2000/2001/2002/2004
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Other contributors to these documents include: Jane Livingston, Julie W. Linda
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DISCLAIMER
All information posted here, unless otherwise cited, is based on the experience
and research of those who prepared the FAQs. We do not guarantee that
everything stated is a fact, as facts may change with time and new information.
Everyone should do their own research and make their own choices based on their
situation and medical team.
Nancy
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