Sunday, April 14, 2013

Fibromyalgia - I Refuse to Surrender

I remember one moment as a young girl.... Possibly 12... Sitting on the school bus being astounded that I had no pain. An odd thought for a young girl now that I think about it. I had been hurting for months with what my mom called "growing pains". Back, legs, neck... Burning pain, doubling over back pain, leg cramps, joint aches.... As I grew older I knew there was a definite pattern to the pain. I'd feel great for a long time, then I'd hurt all over for a time.

Now I'm an adult and I'm finally to the point that there seem to be more bad days than good days. Infections are a definite trigger. A cold knocks me out for months. The stomach flu sends me to the ER. Exhaustion and stress is another. If someone brushes my shoulder I want to cry for the burning pain I may have for ten minutes after. Having my blood pressure checked brings tears and anxiety. I have actually SWORN that I must have laid on a lit cigarette.

My husband tells the kids that "mommies fragile" I know he's "just helping" but it hurts to hear that. I have great bursts of energy in which I will be able to clean the entire house but then I'll be down for two weeks. I will have debilitating pain starting at one point... By the end of the day every joint or pressure point on one side (sometimes both) will flair up. I have medicine sensitivities too, so that can hinder treatment or at least cause severe side effects. If I take one simple steriod pill (prednisone) for a cold I want scream from my joints being ripped apart as a side effect.

Mind you, this isn't the "me" that most people know. Most of my friends see me as a great mom, wife, friend... most of the time. And when I feel well, I am superwoman. Just so happens that fibromyalgia is my kryptonite. Even Joe didn't realize the half of it until the last few years. When you deal with pain every day it can almost become like a background noise. You can look completely normal while your body screams.

When I am pregnant, all this goes away. Which leads me to believe that hormones play a large role in fibromyalgia. I feel great, look great and can conquer the world blindfolded... but after having each of my three boys I would have at least two really rough years. I always understood that it wasn't post partum, but lack of sleep leading to an endless flair... Of... whatever this was. Of course... Everyone assumed that it was "baby blues". I dealt with these times by withdrawing and focusing on being with my baby and my health. This has actually caused a loss of friends... Sometimes family, since the "no's" came as second nature. I have always called these times a "season" and dealt with them the best way I knew how by trying to cope with the stress and fatigue which was a causative factor.

As for treatment... I finally sought out help (for the IBS) after wanting to faint, sweat, throw up from stomach pains any time I left the house. After a really bad case of colonitis that sent me to the ER, I made a vow to get to the bottom of it all. When talking to my doctor (a great guy) I mentioned the pain, but kind of glossed it over and put it in the backround as I always tended to do as I didn't want to be seen as weak... Or a hypochondriac.

The doctor did bloodwork... Vitamin D was really frighteningly low, IRON was low, thyroid levels were "fine" but I did have a pronounced goiter. He diagnosed fibromyalgia and sent me to a GI specialist. Meanwhile, He prescribed Cymbalta, belladonna (IBS) Levothyroxin, Vitamin D and Iron. The cymbalta really did seem to work pretty well for the "surface pains" My skin wasn't as sensitive, my joints felt better... I was still having all over pains but they were better. Much Better. For a year. BUT I am in a new flair now. Two months in. My elbows are in constant pain. The other pains travel. There were two days last week when I was hardly able to leave the bed. Every joint and muscle ached. I just cried. Joe just worried. I think I'm through the worst of it...

My lower GI revealed no celiac. No Crohns. No unusual bacteria. So... The official diagnosis is still IBS, Fibromyalgia with a side of chronic fatigue. The worst part is the stigma. All of those are officially... Unofficial. There are... or were no definitive ways to confirm them. They are, by definition, whats left after everything else is ruled out. So instead of the "relief of diagnosis" I'm left with more questions than answers. That said... While watching a recent episode of Dr. Oz I watched a woman cry as the Dr. showed a brain scan of a fibro-brain. There is finally evidence that the brain of a fibro patient receives pain signals differently. There is also evidence of problems with blood flow within the brain in fibro patients. I understood her tears. To know that we aren't crazy or just "fragile" is a powerful feeling. You can find more on that brain scan here-

The part that frustrates me the most is that my doctor wants to treat the depression/anxiety as the assumption is that it leads to the fibromyalgia/IBS. It is my belief that the fibro/IBS leads to the depression/anxiety. When I feel bad, I get anxious. Not the other way around.

I am thankful... However... To have a husband who understands... And a doctor who takes my concerns seriously. I am also VERY thankful that it isn't life threatening... nor will it lead to not being able to function on a daily basis.

The overall treatment is a whole body approach. I surround myself with people who love me and a God who heals me. I 'want' to eat right. I'm at my best when I sleep when I need to sleep and eat when I need to eat. I no longer feel guilty taking a nap when I need one. Exercise, although very important, can make me much worse if I choose the wrong kind. Walking, swimming, kayaking, yoga... Gentle, low impact movements are best. Sunlight is very important since vitamin D plays a factor. Most importantly, I have learned to grab those good days and use up every ounce. I have also learned that going "outside" of myself and focusing on those that I care about at home and through volunteering helps more than any medicine. This shows me the God connection. Letting Him work through me helps more than anything, so I am learning to give Glory to Him on those good days. By surrendering to Him, I refuse to surrender to fibromyalgia. :-)

This morning I woke up and thought... Nothing hurts. It's a good day. :-)

P.S. After my youngest starts school, I'm considering trying the guaifeneson protocol as seen below. It seems promising... But it will send me into a flair . I may feel much worse before I feel better.

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