Welcome to Anne Red'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 (February 2000) 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/sydromes ~ they are all just as difficult. I dedicate this page to my cousin, who does not have FMS but has lupus & rheumatioid arthritis. I have learned a lot from this wonderful lady. She has had many, many problems over the years but she is always cheerful & upbeat. She is an inspiration to everyone!
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 parraffin 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:
accupressure
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 reacher/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.
The book I learned the most from was Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual by Devin J. Starlanyl and Mary Ellen Copeland
A bonus to ordering books from Barnes & Noble is they do not require you to put your credit card number online. You fill out their online order form and check to call in your credit card number. After you send in the order they will email you a 800 number to call. They will already have all your ordering information so all you have to do is give them your order number (which will be on the email you receive from them) and your credit card number.
If you came in on a webring ~ please check out the rest of my site. Anne Red's homepage
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If you have a page on Fibromyalgia please add it in my Links page. If you don't have a page on FMS please add your link to the Free-For-All Links on my Homepage instead of this one. This will help those who have FMS find information quicker. Thank you!!
Take a poll on Fibromyalgia & then check the stats & see what others think.
