Wednesday, June 9, 2010

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.

Friday, June 4, 2010

25 Random Things About ME

1. I LOVE rain!!! The absolutely 'pouring down in buckets' kind of rain. No wimpy "gentle mist" for me!! I also love the feel of the wind in my hair.

2. Closely related to #1----I love, love, love thunderstorms. No place does thunderstorms quite like eastern Kentucky, complete with fantastic lightning displays zig-zagging all across the sky. I used to really enjoy sitting on the porch on a sultry summer night, watching the show. AMAZING!!!

3. My most favorite fictional heroine of all time.....Elizabeth Bennet. Intelligent, down-to-earth, feisty, kind-hearted and truly genuine. What more could I aspire to be.

4. Favorite flower: Wild Roses----the kind that grow in the hedge-rows and smell so heavenly. Cultivated roses are just too perfect for me. Because I am SO not perfect, I like imperfection (and a little wildness) in other things, too. Imperfection gives character and creates interest.

5. One of my regrets-----not keeping my body in shape through the years. It's so much harder to lose weight at 43 than at 23. Oh, to have a great body again!!! I must keep at it.

6. In highschool, I had a few close "girl friends", but lots more "guy friends". I really don't know why. I think, sometimes, men can be less judgmental than many women.

7. I LOATHE drama. I strive to lead a drama-free life as much as possible. I like a quiet, simple life.

8. It has been a life-long dream of mine to visit Tuscany-----a long visit------okay, actually LIVE there, for a little while, at least. I am Italian and I firmly believe that we have a connection to our roots, however physically far removed we may be from them. How amazing it would be to walk the dusty village roads, get to know the local people, put my hands in the soil----in the same soil that my ancestors did, once upon a time.

9. Directly related to #8----a favorite movie of mine, yep, "Under the Tuscan Sun"!!!!

10. I might regret telling this one----I've been covering up the gray since I was in my mid-20s.

11. I have fibromyalgia.

12. I love biscotti, any flavor!

13. Another dream of mine, after living in Tuscany for a while, is to buy a piece of property in the mountains, away from the world, and live off-grid, off the land, in a cabin, surrounded by trees, a river and a lovely meadow nearby----with a garden and some chickens, a few goats, maybe. Pipe dream, I suppose, but at least I can dream.......

14. I adore cats! I can't imagine my life without them in it.

15. I am shamlessly domestic and a little old-fashioned. I enjoy cooking, hanging out my laundry and the general "art of home-making". Don't expect me to apologize for not being a "career-woman" because I won't.

16. I believe that people should SLOW DOWN and enjoy the beauty of doing....."NOTHING"......cloud-watching, front porch-swinging, day dreaming.

17. I love "treasure hunting" in thrift shops.

18. I was born in San Francisco, grew up in Humboldt County, lived in eastern Kentucky for 15 years, and moved back to Humboldt County 6 years ago.

19. I love wearing jeans, knitted sweaters and hats. I am mostly a cooler weather kind of girl, although, as I get older, my body definitely appreciates warmth.

20. I've never met my biological father.

21. I own a single square foot of land on a country estate in Scotland. Really....it's weird, but totally true!!!

22. I used to wear contact lenses, but I was so afraid to stick them on my eyeballs it would take me at least 30 minutes for each eye, so I finally gave up on them and went back to glasses.

23. I spent a week in Canada with my family enjoying Niagara Falls and other various points of interest in Ontario. On the way into the country, cars were randomly being searched and.....yep....our lucky day. We had to pull EVERYTHING out of our car, along with 3 kids and all their travel paraphernalia and stand away from the vehicle while the border patrol/customs people searched our car. Come on!! WHO, in their right mind, would travel to Canada, by car, with THREE tired and cranky kids just to...what....smuggle something illegal into the country???!!! REALLY!!!!!

24. I have spent more vacations in the Smoky Mountains of Tennessee than I can count.

25. My oldest son, who is only 21, is an Iraq War veteran, my middle son graduates from high school this year, and I homeschool my youngest son.