Wednesday, November 24, 2010

Just another dose of Fibromyalgia Education, in other words... Welcome to my World :-)

"Imagine"
By Christine Livingston


Imagine never feeling good, when you know of no reason not to feel good.

Imagine feeling pain in multiple areas of your body for no apparent reason.

Imagine feeling like your verbal and motor skills are impaired when they were fine a minute ago.

Imagine feeling like you have missed sleep for a week when you have just gotten out of bed.

Imagine something going wrong with your body everyday, when you have done nothing out of the ordinary.

Imagine having uncontrollable shakes and tremors and shocks of pain run through you, and disappear as quickly as they came; leaving you awaiting their return.

Imaging having to live a "normal" life in society, yet knowing your abnormalities will mess that up for you anytime of any day.

Imagine striving to be the best [Aunt] and Wife you could be and being left to feel useless many times over awaiting to feel normal again.

You have now imagined what it is like to be me. I live with Fibromyalgia.
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WHAT IS FIBROMYALGIA SYNDROME?


(pronounced fie-bro-my-al-ja)

A wide spread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments, and tendons-the soft fibrous tissues in the body. FMS used to be called fibrositis, implying that there was inflammation in the muscles, but research has proved that inflammation did not exist.

Most patients with FMS say they ache all over. Their muscles may feel like they have been pulled or over worked. Sometimes the muscles twitch and other times they burn. More women then men are afflicted with FMS. Yet, studies reveal that the condition is equally severe in both genders and that it shows up in people of all ages.

 
To help my family and friends relate to my condition, please think back to the last time you had a bad flu. Every muscle in your body shouted out in pain. In addition, you felt devoid of energy as though someone had unplugged your power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state. This similarity is the reason why experts in the field of FMS and chronic fatigue syndrome (CFS) believe that these two syndromes may be one in the same. Other conditions that overlap with FMS include Gulf War syndrome and multiple chemical sensitivities.
Fibro Tender Point locations below:

This illustration below is borrowed from Dr. Devin Starlanyl's site.



Symptoms and Associated syndromes:

 Pain- The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting and stabbing. Intense burning may also be present, which can feel as though there is acid running though your arteries. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.
 Fatigue- This symptom can be mild in some 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 concertrating, e.g., brain fog.
 Sleep Disorder- Most FMS 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 which recorded the brain waves of patients during sleep. Researchers found that most FMS 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.
In most cases, a physician doesn't have to order sleep lab tests 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 sleep disorder. It should be noted that most patients diagnosed with CFS have some alpha-EEG sleep pattern and some FMS-diagnosed patients have been found to have other sleep disorders, such as sleep apnea, sleep myoclonus(night time jerking of the arms and legs), restless leg syndrome, and bruxism (teeth grinding). The sleep pattern for clinically depressed patients is directly different from that found in FMS or CFS.
 Irritable bowel syndrome- constipation, diarrhea, frequent abdominal pain, abdominal gas and nausea represent symptoms frequently found in roughly 40-70% of FMS patients.

 Chronic headaches- recurrent migraine or tension type headaches are seen in about 50% of FMS patients and can pose as a major problem in coping for this patient group.


Temporomandibular Joint Dysfunction Syndrome- (TMJ) This syndrome, sometimes refered to as TMJ or JMD, causes tremendous jaw- related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have a varying degree of jaw discomfort. Most of the problems associated with this condition are thought to be related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.

 Multiple chemical sensitivities- Studies reveal that FMS patients are sensitive to odors (perfumes, exhaust fumes, cigarette smoke, etc.), loud noises,bright lights, and sometimes even the medications that are prescribed for treating their FMS.

 Other common symptoms- Premenstrual syndrome and painful periods,chest pain, morning stiffness,cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities,dry eyes and mouth, frequent changes in eye prescription, dizziness, and impaired coordination can occur.

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

What causes FMS?


The causes of FMS remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automoblie accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidisim. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that's already present.
What could this abnormality be? Theories pertaining to alterations in pain related chemical transmitters (particularly substance P, seretonin, and norpinephrine),immune system function, sleep physiology, and hormonal control are under investigation. In addition, modern brain imaging techniques are being used to explore various aspects of brain function. The bodies response to exercise, stress and simple alterations in position (vertical versus horizontal) are also being evaulated. In addition , substance P is increased three fold in the spinal fluid of people with FMS, but it is normal in the blood. Substance P is a major pain transmitter and plays a role in sleep, digestion, and other body functions. Ironically, many of the drugs prescribed for FMS/CFS may have a favorable impact on these transmitters as well.
 How is FMS treated?


Traditional treatments are geared towards improving the quality of sleep, as well as reducing the pain. Because deep level (stage 4) sleep is so crucial for many body functions, such as tissue repair, antibody production , and perhaps even the regulation of various neurotransmitters, hormones and immune system chemicals, the sleep disorders that frequently occur in FMS patients are thought to be a major contributing factor to the symptoms of this condition. Medicine's that boost your body's level of serotonin and norepinephrine- neurotransmitters that modulate sleep, pain and immune system function-are commonly prescribed. Example drugs commonly used in low doses are Elavil, Flexeril, Sinequan, Paxil, and Klonopin. Ambien may be used to aid sleep. Ultram may help with the pain, along with many other drugs that minimize the effects of substance P, including opiods for severe pain.


In addition to medications, most patients will need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, occupational therapy, acupuncture,acupressure, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage or a gentle exercise program.
 What is the prognosis?

 Long term follow-up on FMS has shown that it is chronic, but symptoms wax and wane. The impact that FMS can have on daily living activites, including the ability to work a full-time job, differs among patients. Overall, studies have shown that FMS can be equally disabling as rheumatoid arthritis.
 Information and poem from: http://www.friendswithfibro.org/index.html












Friday, November 19, 2010

Time to Start Your Holiday Shopping and I can help!!!




We really hope you can make it, it's going to be a great time. If not, please take a look at the catalog and let me know if I can order anything for you.

Friday, November 5, 2010

Sci-Fi and my Dad

Recently Rob and I have been watching Battlestar Galatica on Netflix since we never saw the episodes the first time around.


First off, WOW. What a show. If you haven't seen it and like Science Fiction, start watching now, you won't regret it.

Secondly, I'm so sad I can't share it with my dad. We loved Sci-Fi together, especially Star Wars and Star Trek the Original and Next Generation. I still remember going to see the movies with him, and waiting in long lines at the Air and Space Museum to see the Star Trek exhibit to sit in Captain Kirk's Chair. It was one of our highlights.

My dad loved Sci-Fi for the adventure and the thought of someday going to space, but he really loved it for the social and political messages and themes written into them. I still remember him telling me his favorite story from a book by William Shattner was about how he and the producer said they "wanted more color on the set" and asked the network if they could make a change. Thinking they meant adding color to the bridge, i.e. more red lights, they said sure. Instead, he and the producer hired Lt Uhura, the black woman who used the communicator devise in her ear. He loved that in the 60's when blacks and whites usually weren't on the same show, let on alone in the same room together, they snuck her on using creativity and smarts to make a point. He loved Next Generation for Lt Data and the story behind robots wanting human thoughts and emotions. And of course all of the Sci-Fi stories for inter-galatic relations between different races. He gave that intrigue to me.

Granted we loved it together for the special effects too, but it was more than that.

Well, BSG is all of that, but at a much deeper level than most. It's philosophical questioning of Humans and God and the Universe, mixed in with Robots becoming their own race, are just mind blowing. Rob and I discuss each episode in depth and often find ourselves having discussions about it, and Sci-Fi in general, over dinner or in the car. Which, naturally leads to Politics, Human Nature and the Environment. All things which my dad would have loved to ponder about.

So Dad...I'm watching BSG in Honor of you and are our repeated trips to the Air & Space Museum, Natural History Museum and shared movies and TV shows.

I miss you and love you.

To everyone else, have you seen it? What did you think? Keep in mind we are almost done with Season 1, so no spoilers please :-)