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Frances Bartlett's Fibromyalgia Page
Welcome to Fran's
Fibromyalgia (FMS) Page!
Fibromyalgia (FMS) is a very difficult
disease/syndrome to grasp. There are so many different aspects of it. I have
been doing a lot of research & reading since I have been diagnosed in
1998) with FMS. This page is just to give you an understanding of what FMS is
according to my research. This is NOT an "official" FMS page! FMS is a disease
but because it is unknown what causes it. It is called a syndrome. This is
because there are so many different sets of signs & symptoms that occur
together. The word syndrome throws people because they think it isn't a "real
disease" or problem if it is called a syndrome. Think about this, rheumatoid
arthritis & lupus are also called syndromes. But everyone knows the problems
involved with them -- with FMS there just isn't as much knowledge or data
available. In the Fibromyalgia Relief Book by Miryam Ehrlich Williamson she
states that in 1993 two studies were done that measured the quality of life of
women with FMS against that of women with rheumatoid arthritis, osteoarthristis,
chronic obstructive pulmonary disease, insulin-dependent diabetes, and lupus. In
almost every category, women with FMS scored lower than those with the other
chronic diseases (you can find this on page 8 of her book). So you can see that
those with FMS have to really fight to keep up their quality of life. This is
NOT to make light of other diseases/syndromes ~ they are all just as difficult.
There are MANY problems involved with FMS.
Studies are still being done to try & determine what causes FMS and why
there are so many different problems involved with it. Some studies are looking
at the following:
1) Sleep disorders that prevents the body from
regulating itself correctly
2) the muscles lack sufficient oxygen or are
unable to use oxygen as fuel
3) low levels of seratonin (chemical that
moderates pain)
4) high levels of substance P (a pain transmitter) in the
spinal fluid.
Due to the many different symptoms & the fact that
everyone has different problems this makes FMS hard for people to "believe" or
grasp. Fibromyalgia is called the "Invisible disease" because others are unable
to see all the pain you are in.
To be diagnosed with FMS you
usually must have widespread musculoskeletal pain in all four quadrants of the
body for at least three months. You must also have problems with at least eleven
of the eighteen specific tender points.
Products that may help
to cope/relieve pain:
Please note I do not endorse any of these items, I don't know that they
will work, and with FMS different things work for different people. Personally I
have scoured the internet, books & stores for things that may help. I
thought I would list some ideas here to give people different things to think
about.
capsaicin cream
door handle grips
eggcrate or some type of
mattress topper
electric blanket
foot bath
GOOD shoes
heating
pad
magnets
massager
mat that you sit/lay on that
messages/heats
pill boxes
pillow rest
shoe insoles made for pain
relief
sound spas or nature tapes
therabath paraffin heat therapy
system
therapeutic pillows
vitamins
whirlpool or a small one that will
sit in your tub
writing grips
Things to explore that may
help you cope with FMS
Again, I do not endorse any particular
methods and I certainly have not tried them all. This is a compiled list of
items/suggestions that I found during research:
acupressure
acupuncture
aromatherapy
biofeedback
breathing
-learning to take deep breathes
chiropractors
educate yourself on
FMS
exercise
focusing
guided imagery
guaifenesin
therapy
herbs
hypnotherapy
journaling
meditation
massage
therapy
music therapy
nutrition
pet therapy
polarity
therapy
physical therapy
reiki
reflexology
stretching
subliminal
tapes
support groups (locally or online)
tai chi
talking with others
who have FMS
Qi Gong/Chi Kung
walking meditation
water
therapy
yoga
Things to help with household chores:
*make sure you have a light-weight vacuum
*use a Swifter to keep on
top of vinyl floors
*purchase clothes that don't require ironing
*compile
a list of quick crock-pot recipes you can throw together on bad days
*keep
some frozen dinners in the freezer that can be thrown in the oven on extremely
bad days
*use paper plates & napkins! *S*
*use a reached/grabber to
get items down from high shelves
*try to get two weeks worth of groceries
when you go shopping
*use the internet to search out information on products
you want to buy before you go to the store - so you not standing in the store
trying to read labels or compare products
*shop online
*keep straws
available for when your hands hurt so bad it is hard to drink from
glasses
*If your hands hurt in the cold use oven mitts while rearranging your
freezer
Other Helpful Hints
*Keep
pillows in the car for long trips
*If you love to read but chronic pain in
your hands prevents you from holding books get in touch with your local library
for the blind see if you qualify to receive free access to audio books
*Look
into having a raised garden built if you love to work with herbs/flowers/veggies
but can't bend down to do it any longer
Factors that
may aggravate FMS
anxiety
cold or drafty places
diet
changes
hormone changes
stress
weather
changes
Ways to educate yourself
check
out online chatrooms for FMS
check out library books
locate a local
support group
purchase books or videos
search out a FMS webring
see if
any local hospitals have any pain seminars
surf the net - do a fibromyalgia
search
talk to your Dr, Physical Therapist & rheumatologist
talk to
others who have FMS
join e-mail lists about Fibromyalgia
If
you have FMS -- good luck in finding things that work for you. Keep in mind that
you are not alone, and others DO care. FMS may not be curable today but..
someday it may be and in the meantime we can look for ways to ease the pain.
If you have a friend who has FMS - be supportive! They need all the
support they can get as many people blow off their pain because they don't
understand it. Sometimes they just need someone to visit with to take their
minds off things. I am very lucky and have so many friends/family/Dr who are
supportive and are always there for me. If it were not for them~~~ I don't even
want to think about it! I have more people ask me "What can I do?" Actually
there usually isn't much they can do but it sure is nice that they care enough
to ask!
A HUGE thank you to my family/friends/Dr's for all they do, and
being the supportive people that they are! And a big thank you to my online
friends who answer my many questions about FMS.
Search barnesandnoble.com for books onFibromyalgia
The book I
learned the most from was Fibromyalgia & Chronic Myofascial Pain Syndrome: A
Survival Manual by Devin J. Starlanyl and Mary Ellen Copeland
Some of My Links (Visit my
homepage for more)
Helpful
links I found on the net
