Fibromyalgia is a complex little bugger.
I was diagnosed in February 2011 after years of doctors shrugging their shoulders and saying all my tests were normal. I wasn't upset when I was diagnosed, in fact, I was relieved. I could finally put a name to what was going on. The onset of extreme exhaustion and fatigue, nerve pain, muscle pain, stiffness, disturbed sleep patterns and insomnia, cognitive fog, TMJ, stomach pain, chest pain, depression and more was not because I was going mad. It was not because I was making up this sometimes very debalitating pain and exhaustion. It was because I had been suffering from fibromyalgia.
There is a huge amount of controversy surrounding this illness to the point where I have often felt strange talking about it. Many doctors have questioned a fibromyalgia diagnosis as being a "catch all" for all things they can't identify. There is not a blood test or a scan. It is based on a physical exam that identifies tender points and a through a thorough evaluation of your case history and symptoms.
But it was recently I realized how much I DO need to talk about it. My own family and many of my friends have been in the dark about this condition and that exacerbates the very thing that makes me upset. That people question whether or not you have it. That people question why you're ducking out of events. They wonder why you're so out of it and slow and tired or they think that you're just not paying attention, when the truth is you are just so exhausted and your mind is so thick with brain fog that your body is telling you to stop.
Some days are better than others. Some days I feel fine. Some days I know I will be busier than others and I save a little energy for later and push through. And some mornings I feel like I've been run over by a truck. On occasion my sleep is normal but most of the time, I wake up at least twice a night, sometimes as many times as every hour when it's really bad. If I wake up only once I consider it a good night. If I sleep straight through, it is a blessing. But most of the time, even if I've slept 8 hours, I wake up feeling like I never went to bed at all. People with fibro have a very difficult time reaching REM sleep and so we never quite reach that restorative state that is so important for our bodies. We wake up unrefreshed. Waking up almost every morning like this is no fun task. Morning stiffness is another killer. I remember one of the first times I started connecting the dots. I thought it was just normal that everyone woke up sore. I thought it was normal that if you stayed in bed for too long your body would get stiff. It was only after finding out that other friends my age didn't wake up this way that I started realizing something was not quite right.
Another fun symptom is inflammation of the cartilage surrounding the ribcage but before I realized it was costochondritis (which mimics cardiac pain), I thought something was wrong with my heart. Just to be safe my doctor ordered an EKG and an Echo. My ticker was just fine.
Bringing awareness to the table is of the utmost importance. People don't know enough about it. And I can't get mad at my own friends and family when they question it if I never bring it up.
Well, WHY haven't I been talking about it?
Because I don't want to be defined by it. I don't want it to have that power over me. I won't let it.
I don't want to use it as an excuse for the things I cannot do when I am exhausted, or the things I need repeated, or the difficulty I have putting sentences together when the fog is thick. I don't want people to think I'm weak. But it IS time to start bringing awareness to the table. Sometimes I feel like Fibro is invisible. People question it because they can't see it. "But you look fine!" Or "But you do so much!" are things I sometimes hear. Just because I look fine doesn't mean I'm not fighting through the symptoms. I've just gotten good at dealing with it and not making a big deal out of it. In fact, when I'm taking care of myself, my symptoms are minimal and mild.
There is no cure for fibromyalgia. You can only try to relieve the symptoms. And the symptoms vary in severity person by person. Treatment varies as well, as one person may respond differently than someone else. Finding a treatment plan is a series of trial and error. I have personally decided that going on the meds to treat the pain are not worth the side effects. I have found success with diet and exercise and attempting to get normal sleep. Not sleeping makes everything worse. Your memory goes, the pain increases, the fog increases.
I started to experience my first symptoms in 2005. I remember little lightning bolts of electricity in my fingers and wrists and ankles. It would come and go. The rest of the symptoms amped up over the next several years but they really started in 2008-2011. Sleep problems, jaw issues, stomach issues, and weird nerve pain that felt like being stabbed by tiny little knives very quickly were the hallmarks of my symptoms. Surrounded by the morning stiffness, brain fog, fatigue, and ribcage pain, I knew there was something wrong, I just didn't know what. People with fibro are not hypochondriacs. The pain is real. It is thought that people with fibro do not process pain signals correctly and the result is increased pain. For instance, applying minimal pressure to one of the 'tender points' would cause great pain/discomfort for someone with fibro while someone without fibro would be just fine.
There is no "one" identifiable cause of fibromyalgia. It is thought to be triggered by physical or emotional trauma, injury, or illness. It could be brought on by an autoimmune disorder, it is linked to Lyme disease, it is often thought to be a comorbid condition that exists with another condition. (And sometimes THIS is the condition that is undiagnosed that has caused the fibro). There are so many factors and there is not enough research.
I have my own ideas about how I developed Fibromyalgia. I originally thought that it was linked to a traumatic event that occurred in 2001. Without going into detail, as that is another story, I have always believed that to be the trigger. That same summer, however, I was in a car accident which could have been the trigger. In the back of my mind still is the theory of chronic Lyme disease or undiagnosed Lyme.
I used to be a camp counselor and my doctor at the time in 2004 tested my for Lyme when I started to have trouble with my knees. The test came back negative. I immediately ruled it out. Last year I went to a kooky doctor who wanted to test me for Lyme again. I ruled HIM out. But more research on my end has shown me that Lyme tests are very inconclusive. False positives and negatives occur all the time. And undiagnosed Lyme has many of the same symptoms of fibromyalgia. I would like to get tested for it again, but with a Western Blot, which is a completely different kind of lab that needs to be analyzed by a Lyme Literate doctor. If it turns out Lyme is the cause, well, I've got a whole other slew of issues to deal with. But at least that would give me more insight as to what has caused the fibro symptoms.
That is a whole load of information.
This website has even more:
And this all brings me to what this blog is about and why this goal is so important to me.
Stay tuned!
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