Wednesday, March 15, 2006



Fibromyalgia

Some of you know that I have fibromyalgia, but most of you probably don't because it's not something I usually talk about. I'm not one to whine or complain much about it, because it doesn't do a bit of good. But a few weeks ago, one of my readers asked me in a private e-mail what fibromyalgia is, how it affects me, and what I do to cope with it. So, here goes. . .

Fibromyalgia isn't technically a "disease", it's a syndrome. On WebMd, it is defined as "a syndrome, distinguised by chronic pain in the muscles, ligaments, or bursae around the joints. It is called a syndrome because it includes a set of conditions that always occur together. . . It comes from a combination of three Latin words. Fibro- (fibrous, for the soft tissues of the body under the skin, especially around the joints, including tendons, and ligaments), my-(myo - for muscles), and algia (pain) mean pain in the supporting tissues of the body, such as tissues around the knee or muscles around the shoulder." There is no cure for it, and it usually persists into old age. In the past, many believed it was just a "psychological aberration" because it has no visible signs and it couldn't be confirmed in laboratory tests. However, it now appears as a disorder of the neuroendocrine system involving chemicals of the brain and blood that regulate how pain is perceived in the body.

The pain is often described as "burning, gnawing, sore, stiff, shooting, deep aching, or radiating". There are 18 tender points on the body which can be affected. Fatigue can affect normal functioning. Neurological symptoms are possible. Numbness and tingling in the arms and legs are common. Severe tension headaches or migraines occur in about 40 percent of persons with fibromyalgia. There are a myriad of other symptoms as well, such as irritable bowel syndrome.

For me, the symptoms came on gradually. But they got worse until I could no longer ignore them. I can remember being very frightened, wondering what could possibly be wrong with me. I went to the doctorabout 10 years ago, and he was able to diagnose me immediately. It was such a relief to know that there was a concrete reason as to why I was feeling the way I was feeling, and it wasn't a terminal illness. I took matters into my own hands, and devised my own treatment plan which included an increase in exercise, taking some medication (a muscle relaxant), and eating much healthier.

My doctor also recommended that I join a support group. However, the one I went to (for just one meeting, I might add) wasn't very well run. There were a couple of people in wheelchairs. All of the people there complained about what was happening to their bodies - and rightfully so - but none of them were doing anything to help stave off the progression of their symptoms. It was a very depressing evening, but frankly, it helped to firm up my resolve to stay on my course of treatment. When I returned to my doctor several months later, he asked me about the support group, and I told him what I had witnessed. I said that I did not want to end up in a wheelchair like the two women I saw at that meeting. He smiled gently and said "Val, you can end up incapacitated if you don't continue doing what you're doing right now." That frightened me even more, but it also gave me an incentive to try to stay active and exercise. Most people with this condition allow the pain to get in the way of exercising - but you still have to do it because if you don't, then the muscles atrophy. Most people allow the pain to affect the quality of life - but you can't because if you do, then you begin to feel pretty hopeless and helpless.

Some days, the pain is worse than other days. Some days, I wish I could just stay in bed all day. Those are the days that I remember the ladies in the wheelchairs, and that gives me the incentive to keep on going. There are days when I'm feeling pretty good, so I relish those days and live them to the fullest. But one thing I have discovered through all of this is that I can't allow the way I feel (both physically and emotionally) to dictate my thoughts and my actions because if I do, then I would become literally and figuratively paralyzed. I draw on my strength and faith to help me through the "bad" days. I offer up my sufferings to the Lord - a concept which is known as the redemptive nature of suffering. And I am just so grateful that, despite all the pain, I am still here to be my kid's mom.

17 Comments:

At 9:35 AM, Blogger HeyJules said...

Thank you for this...

As someone else who lives with a chronic illness, its good to see how others handle it. I appreciate so much your honesty and inspiration.

 
At 9:44 AM, Blogger the tentmaker said...

Val, you are an inspiration to me. Thank you for your openness and honesty.

You truly are a person of great faith. That fact comes through in all that you post.

Thanks for the kind words during our bereavement. God bless you.

 
At 10:09 AM, Blogger Hikingalong said...

Val, thank you for sharing this. This has helped me understand the pain my mother in law faces with Fibromyalgia. Did yours start with certain symptoms? I'm wondering because I've been having tingling in my arms and burning in my feet lately. Thanks!

 
At 11:54 AM, Blogger Tyra said...

I admire your strength. It would so much easier to just give in,wouldn't it? But instead you keep your eyes on the big picture, you truly are an inspiration.

 
At 1:28 PM, Blogger Julana said...

Val,
I'm sorry to hear about your pain. I have recurring migraines, and know it can really hamper one's activities.
I appreciate your sharing. Hang in there with the exercise. I find that really difficult myself.

 
At 1:55 PM, Blogger Paula said...

Thanks for opening other people's eyes to the truth about this awful disease. I've never been formally diagnosed with fibromyalgia, but I think I have it myself. Hope you're feeling better soon. Love and hugs!!!

Your Sister In Christ,

 
At 8:28 PM, Blogger Dr Roy said...

There is hope for some. My name is Dr Roy Murrell and I am a Chiropractor in Portland OR. I have discovered that for some Fibromyalgia patients there is a connection between upper cervical (neck) compression and Fibromyagia. If you are interested in more information log onto www.endfibromyalgianow.com .

 
At 2:30 PM, Blogger My Kid's Mom said...

Jules: I was thinking of you when I wrote this :-)

Joel: You're very welcome. I visited your blog today and read your sermon for your mother in law - it was such a loving tribute. I thank you for your kind words as well.

Berry Mom - You're welcome. My symptoms began with headaches initially, but then it progressed into fatigue and neckaches and a horrible pain in my right shoulder. I do get tingling at times, too. It would probably be worth it for you to get your symptoms checked out!

Tyra: At times, yes it would be easier to give in. But that vision of the wheelchairs makes me "shape up", so to speak! However, there are days where I will take a nap if I really need to. Thank you.

Julana - I find that my headaches (which closely resemble migraines) are the beginning of a fibro episode.

Paula - Hey, if you think you have it, go and find out for sure. Medication care really, really help.

Hi Dr. Roy - I think in my case there is a definite connection with the fibro and the cervical neck compression - that is one of two areas where I am most affected. I had severe whiplash about 25 years ago, so it wouldn't surprise me if this is all related.

 
At 3:38 PM, Blogger Vicki said...

Hi Val,

I came by to thank you for your prayers and support, and was actually encouraged to know that you understand fibromyalgia. I have it, along with chronic fatigue immune deficiency, so I surely understand. It's been a year since my diagnosis and my doctor put me through everything from brain scans to thyroid scans, and neurological testing. The pain has been almost unbearable at times, and yet we learn to plow through it and try to take better care of ourselves.

My granddaughter is here--gotta scoot! Hugs & blessings to you. I'm so glad to know you!

 
At 5:14 PM, Blogger Laura S said...

I have recently been diagnosed with Fibromyalgia. I am pretty discouraged. I was looking for a reason for my fatigue years ago and finally gave up since all the Doc's said I was A-OK and was "probably just depressed" . Who wouldn't be?! Feeling like you are 80 when you are 20 is no walk in the park! So now i am reading alot and sleeping alot which surprisingly makes me more tired than before. My husband is a saint. He is more aupportive than I could have ever hoped for and I am thankful for that. I too, am a mom of 4 children and a caregiver for my father so I know how hard it is to be selfish when opthers depend on you. I will learn the ropes with time and go on as I did before. I know I will get better and then at some point sick again. It's a waiting game for me. Good days and bad ones. The good ones make up for the rest. Hang in there!

 
At 7:20 PM, Blogger JodiTucker said...

God bless all of you with chronic health issues. It's hard for me to understand first hand, but your comments and Val's current blog help me be more compassionate with all people, never really knowing what each person's burden(s) is/are. Thank you for sharing.

 
At 10:33 AM, Blogger Sarah said...

My mother in law has Fibromyalgia. I know some days are really hard for her. She also has diabetes and rumathoid arthritis. Ten years ago her docotr said that he gave her two years before she is in a wheelchair. Well, she is the strongest woman I know. She is still going strong, no wheel chair I might add!

 
At 12:44 PM, Blogger Barbara said...

Hugs to you Valerie,

I hope that you don't get these attacks too often - good for you that you have such a positive attitude - that goes a long way I am sure!!!

Will keep you in my prayers and thank you for sharing this with us.

Blessings

B

 
At 11:08 PM, Blogger Kevin said...

"But one thing I have discovered through all of this is that I can't allow the way I feel (both physically and emotionally) to dictate my thoughts and my actions because if I do, then I would become literally and figuratively paralyzed."

You've just defined the essence of the act of "Love" as St. Paul speaks of it in 1 Corinthians 13. When we may "feel" anything but "Love," that is the time when we must exercise it. It's an act of will as much as, and perhaps more than, an act of the heart. I admire you, Val.

 
At 1:45 PM, Blogger My Kid's Mom said...

Vicki - One more thing we have in common, huh? I'd like to talk to you more about it some time, ok? I hope you are doing well.

Laura - Welcome to my blog. I'm sorry to hear that you suffer so much - especially with four kids and being a caregiver.

Jodi - I think you were pretty compassionate to begin with! ;-)

Sarah - Good for your mother in law!!! A fighting spirit is half the battle, I believe.

Barbara - The attacks are unpredictable, but I usually get at least two a month and they last for about 4 or five days. Thanks for your concern and prayers.


Kevin: Thank you so much, my friend. I appreciate your kind words.

 
At 12:29 AM, Blogger About My Life said...

Thank you again for sharing. I was diagnosed with Chronic Fatigue & Fibromyalgia in 2002 and understand how devestating it can be. It is hard for people who haven't suffered from a chronic condition to understand that most times my life is measured day by day and what I am capable of physically accomplishing that day.

 
At 9:46 AM, Blogger Nicolle said...

I just found this blog...thanks for sharing. I was only diagnosed with CFS/Fibro about 6 months ago. My doctor just mentioned yesterday the possibility of ADD. I never considered myself as possibly having ADD before (thinking of children who bounce off the walls--I only wish I had a quarter of the energy they do). In so many other ways ADD fits me to a T---the inability to concentrate, distractability, etc. Have you seen the connection between fibro and add? It seems there is a lot on the web about it, but like I said I never would've imagined that connection. Thanks again.

 

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