Thursday, October 22, 2009

Information from the International Fibro/ME/CFS group on Facebook

The site offers this information to freely share.


Fibromyalgia can affect every aspect of a person's life. While neither degenerative nor fatal, the chronic pain associated with fibromyalgia is pervasive and persistent. FMS can severely curtail social activity and recreation, and as many as 30% of those diagnosed with fibromyalgia are unable to maintain full-time employment. Like others with disabilities, individuals with FMS often need accommodations to fully participate in their education or remain active in their careers.

Fibromyalgia is often referred to as an "invisible" illness or disability due to the fact that generally there are no outward indications of the illness or its resulting disabilities. The invisible nature of the illness, as well as its relative rarity and the lack of understanding about its pathology, often has psychosocial complications for those that have the syndrome. Individuals suffering from invisible illnesses in general often face disbelief or accusations of malingering or laziness from others that are unfamiliar with the syndrome.

Common symptoms of fibromyalgia and chronic fatigue syndrome:

Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.

With FMS there are 18 tender points that radiate pain on a daily basis.

Fatigue - This symptom can be mild in some fibromyalgia patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.

Sleep disorder - Most patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine that recorded the brain waves of patients during sleep. Researchers found that the majority of fibromyalgia patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.
Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck—what doctors refer to as unrefreshing sleep—it is reasonable for your physician to assume that you have a sleep disorder. Many fibromyalgia patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).

Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of fibromyalgia patients. Acid reflux or gastro esophageal reflux disease (GERD) also occurs with the same high frequency.

Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of fibromyalgia patients and can pose a major problem in coping for this patient group.

Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one-quarter of fibromyalgia patients. However, a 1997 published report indicated that close to 75% of fibromyalgia patients have varying degrees of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.

Other common symptoms:
Chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, premenstrual syndrome and painful periods, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur.

Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications they are prescribed.

Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to fibromyalgia symptom flare-ups.

NOTES:
Did you know?????...
Florence Nightingale was probably the most famous non-royal person of the Victorian period. She helped develop modern nursing.

By 1896, Florence Nightingale was bedridden. She may have had what is now known as chronic fatigue syndrome and her birthday (12 May 1820) is now celebrated as International CFS Awareness Day.

As usual with fibromyalgia the amount of co-morbidities (other diseases) is high and may confuse the diagnosis. The fact that she developed her fibromyalgia after an apparent infection trigger made it called chronic fatigue syndrome and the infection itself is being accused of the symptoms. A recent biography cites brucellosis and associated spondylitis.

NOTE: Please invite everyone, our goal is to make it around the world and create an awareness so that FMS CFS and ME are not the invisible illness, or the illness that when you mention it you get asked questions that are too complicated to explain in a passing conversation..

YET ANOTHER NOTE: This is a Worldwide Event and can be celebrated at home or by contacting a local group. We are trying to create an awareness of the DATE and ILLNESSES; INTERNATIONAL FIBROMYALGIA AWARENESS DAY / CHRONIC FATIGUE / ME DAY

Please check out the LINKS which might lead you to a group in your area or just pass on the awareness to your friends... The pictures have added insight to many as well.

OUR VOICE IS POWERFUL!!! (On May 12, 2009, we started this virtual event with a goal of being heard around the world and we did...
"IT IS AMAZING TO SEE IN SUCH A SHORT WHILE...JUST HOW WE HAVE UNITIED PEOPLE FROM ALL ACROSS THE WORLD!!! WE WANT TO SHOW JUST HOW BIG OUR VOICE IS...AND BY ALL MEANS TO ANYONE WHO IS FROM SOMEWHERE NOT ON THE LIST...FEEL FREE TO POST ON THE WALL WHERE YOU ARE FROM AS i DO BELIEVE HAVING FOUND SUCH A HUGE VOICE GIVES US ALL A SENSE OF UNITY AND A FEELING OF HOPE!!!
The places are: All of the 50 states of the U.S.A.; 7 out of the 10 Provinces of Canada; District of Columbia; Federated States of Micronesia; Puerto Rico, Australia; Central America; South Africa; Japan; Italy; Scotland; United Kingdom; Portugal; Barbados; Norway; Sweden; Spain; Glasgow; England; Ireland; New Zealand; Wales, Isle Of Main."

1 comment:

Jo said...

Thank you, thank you for posting this. I have fibro and this is a perfect description. I shall go and join the group forthwith.