Living With Fibromyalgia

Hello! My name is Patti, and I have Fibromyalgia. Although this sentence is attributed to the 12 Step Program for Alcoholics, it nonetheless applies to those of us who suffer daily with Fibromyalgia. The first step toward healing is admitting that you have this....thing....this condition/syndrome, that robs you of rest and health and general well-being. It is only after that admission and acceptance that we can move to a place where the quest for knowledge and support can happen.

Knowledge: It is SO very important to be informed about anything that is wrong with our body. In this case, knowledge is, indeed, power!! Because Fibromyalgia is now recognized by the American Medical Association, those of us who live with it can feel more confident about sharing our plight---spreading the word to our family and friends---about what FM is, and isn't. We need not be shamed into thinking that it is "all in your head" or fearful that others will think we are just "faking it".

Support: It is equally important to have the support of those we love and share our life with. It is emotionally hurtful and counter-productive to hear things like, "but, you don't look sick" or "you're hurting again----but you haven't really done anything today that should cause that kind of pain". Hearing those kinds of things can make us feel unloved and usually cause us to just "suck it up" and keep our mouth shut. No one should have to suffer in silence.

The difficult thing about FM is that it is often considered an "invisible" disease. Even though the pain is generally associated with the areas around the joints, there is almost always no inflammation. In fact, most common symptoms associated FM with are internal, in nature, so others can't see the effects it has on on the body. And, sadly, to many, if we don't look sick, we aren't sick.

What, exactly, IS Fibromyalgia? This article is a fantastic overview of what FM is. It is so difficult to define and explain to someone who just has no idea. This particular article should help. It might be a good idea to print it out and give a copy to your close friends and family members.

There are also such misconceptions about Fibromyalgia. This interview with an expert from Mayo Clinic is the best I've read and details those common misconceptions.

Here is a simple description of Fibromyalgia, including a list of common symptoms:

Fibromyalgia is a chronic syndrome that causes pain and stiffness throughout the tissues that support and move the bones and joints. Muscle pain, tender points, and fatigue are the predominant symptoms associated with fibromyalgia. Fibromyalgia is very common, affecting up to 5 percent of the U.S. population. Although anyone can get fibromyalgia, eight times as many women develop it relative to men.

Common Symptoms:

~Pain: Most people diagnosed with fibromyalgia feel pain all over their bodies, above and below the waist and on both sides of the body. Many report that the pain is worse at some times than at others. For example, morning stiffness is common, and the pain may be worse on some days than others. The type of pain varies and may be described as burning, aching, shooting, stabbing or tingling. It may also change locations. Headaches and temporomandibular joint (TMJ) syndrome, which causes jaw pain, are also common. Fibromyalgia is a physical illness. Research shows that the brains of people with fibromyalgia handle pain differently from those of “normal people” and that much more of their brains are involved with the pain signal.

~Fatigue: The fatigue of fibromyalgia ranges from the feeling of being slightly tired to the exhaustion of a flu-like illness. The fatigue may always be present to some degree, or it may suddenly sweep over a person like a wave, bringing with it a longing, or need, to lie down.
Some describe their fatigue as feeling like there are concrete blocks tied to their arms and legs. Some also report “brain fatigue” – feeling totally drained of mental energy and having difficulty concentrating.

~Brain Function Problems: Some people with fibromyalgia experience problems with poor concentration, thinking clearly, short-term memory or multi-tasking.

~Sleep Dysfunction: Sleep does not refresh or improve fatigue. Fatigue may be present even after sleeping for 10 to 12 hours.

~Problems with Automatic Body Functioning (Autonomic Nervous System): The autonomic nervous system regulates key functions in our bodies that occur "automatically," without us thinking about them. This includes, for example, keeping our heart beating, our blood pressure regulated, our stomach and intestines functioning properly and our lungs working. When this system is affected by fibromyalgia, a variety of symptoms can occur as a result, such as light-headedness, dizziness/vertigo, heart palpitations, shortness of breath and sweating, diarrhea, constipation, nausea, gas and bloating (all related to IBS--Irrital Bowel Syndrome).

~Hormonal and Endocrine Symptoms: Some people with fibromyalgia have trouble maintaining their body temperature and feel cold all the time or feel hot.

So, as you can see, FM affects many body systems with an amazingly wide range of symptoms. Although Fibromyalgia is not progressive or fatal, living with it on a day-to-day basis can be overwhelming. The pain is crushing, the fatigue is all-consuming, but a restful, refreshing sleep is unattainable.

There is currently NO treatment for Fibromyalgia. Doctors can, and do, prescribe a plethora of medications to help alleviate symptoms, which, in turn, create a load of other symptoms for which additional medications must be taken, etc., etc. I have found that with most ailments, a more natural approach is desirable. There are various homeopathic remedies which some have found helpful and it has been discovered, more recently, that a gluten-free diet may be very effective in treating various FM symptoms, from pain to IBS.

I am 6 full days into a gluten-free diet and I can already notice a difference in how I feel. Now, I can't say whether this improvement will be long-term or not and although this certainly may not work for everyone, it is, in my opinion, worth a try. Gluten intolerance has been linked to a variety of health issues, and considering that approximately 1 in 133 Americans have a problem with gluten, it is no wonder that removing it from our gluten-laden diets makes us feel better.

So, whether or not you choose natural or homeopathic remedies or decide to go with a more "western" approach to your FM care, the most important thing we can do for ourselves is to be educated and pro-active. And equally important is finding and using whatever works for us so that we may enjoy our life and be able to share in the lives of those we love.

Please visit The National Fibromyalgia Association:

http://www.fmaware.org/site/PageServer

"In the midst of winter, I finally learned that there was in me an invincible summer."
-- Albert Camus --

**Most clinical information was obtained from http://www.womenshealthmatters.ca and http://www.healthscout.com.