It's official. I have fibromyalgia.
What?
Are you SURE? I mean we checked for all kinds of stuff... MS, Lupus, Rheumatoid Arthritis... not that I would prefer any of those. But at least they are "real" conditions. I would never give anyone a funny look or think they were just a hypochondriac if they told me they had one of those conditions.
Now the battle within ensues.
The first time I heard the word FIBROMYALGIA was when I was in high school. I knew someone well that I considered to be a hypochondriac. But she let me know that she had this crazy syndrome that just made you hurt all the time and tired all the time. No one knew why. No one knew what to do about it. Yada, yada, yada.
(Skip ahead if you'd like. I'm going to include a lot of detail. Just in case it might help someone else)
Fast forward a few years. I've tried to place when this may have started but who knows. I do remember one day when my children were small- small enough that I was still cleaning their rooms for them- I was cleaning Molly & Sara's room. I had spent a lot of time on the floor sorting their stupid Polly Pocket stuff. (I hated that stuff- almost worse than Legos) Later that evening my knee was aching. A LOT. And it got worse and worse over a few days so I went to the doctor. I do legitimately have an issue with my foot arches that cause knee issues but I don't remember my knee(s) ever not hurting from that point forward. I have braces, shoe inserts, etc. I've gone to physical therapy. On and on. In the past few years even my ankles and hips have been hurting. Sometimes aching so badly that it wakes me up. I thought this all had to do with my dumb feet.
On a separate note (or so I thought) I've had (again since my children were small) odd spots on my body that hurt VERY bad if anyone pushes on them. I'm talking just a normal poke to the ribs is terribly painful. I just chalked this up to me being sort of an odd duck and lived with it.
Several years ago I started feeling overly fatigued. I had started an anxiety medication about the same time so assumed that was why. I also knew I needed to eat better and lose weight so I blamed most of all of this on those issues. But lately I have been dang tired. I can literally lay down at any point in the day and sleep for hours. However, I have insomnia at night. Even if I make myself get up early and not sleep during the day. It's very annoying.
Finally, the "brain fog" I hear it is called. My kids have just been accusing me for years of having Alzheimer's. I heard once that hormonal imbalances caused forgetfulness so yeah... I had an excuse for that as well.
Several months ago the aches and pains got so bad it was hard to walk sometimes. If I sat for very long I was incredibly stiff when I got up and moving was painful. I had been taking over the counter anti-imflammatories like mints for years. But I thought I'd ask my doctor for something stronger. So he gave me something. I took it for a couple of months and nothing. So we tried something else and did some blood work. It showed that my body had a high level of inflammation but I was having sinus surgery soon so he thought we should address it after my recovery and see if there was improvement. But the new meds also didn't work. I visited him last week and we did more blood work but we also had a nice conversation. I brought up that "F" word. I asked him if fibromyalgia is real. He chuckled a little bit and said "I want to show you something." He turned his computer screen around and showed a note from several visits ago. He had noted "Probably fibromyalgia."
Lame. I walked out in a daze. Lame because so what. People have surely gotten FAR worse news from their doctors. But I was embarrassed. I didn't want to tell anyone. Certainly not my family whom I had indoctrinated to my 'fibromyalgia is fake' mantra.
No wonder! This explains so much. All the time that my ex-husband blamed me for being lazy and out of shape and why did I sleep so much? It made sense! I could start letting go of a huge heap of my self-criticism.
But what if I've been right? What if it is fake?
I know who would know. Dr. Oz. If he believes in it... then it is OBVIOUSLY real. (insert only slight sarcasm here- he really is pretty cool)
http://www.doctoroz.com/episode/disease-doctors-miss-most-fibromyalgia
Again... wow.
Now what? I tell David. While he's at work and just kind of busy. Then I tell my kids. NO. REACTION. WHATSOEVER. FROM. ANYONE.
Ummmm.... helllloooo... I just told you gusy I have the "disease doctors miss most".
But I don't freak out. I call my BFF Amy and whine that no one cared. I get the perfect amount of "oh sweetie... I am soooo sorry" that only BFF's know how to dish out.
In the mix of all this I panic a bit. I recall a time when I was pregnant and was tired, of course. But at my doctor's appointment he freaks out about my iron levels and says "How did you not know? Haven't you been exhausted?" As soon as he said that I felt REALLY tired. I could barely drive home. Nothing had changed. Except I knew I was supposed to be tired. So I stopped pushing through and making myself believe I was fine. What if that happened now? I had to make sure it didn't. I had the power. Right?
I'm still sad at this point that I got zero sympathy from my family. So I get on the internet. I literally search "my mom has fibromyalgia" and "my wife has fibromyalgia". Try it. Fun reading. Everything I came across was something about the mom/wife laying on the couch all day and doing nothing and the family was trying to be helpful but had enough. Yikes.
Let's remember. Nothing had changed. Except I had new knowledge. And new meds!! And they were working!! Apparently this confirmed the diagnosis. Along with the further test results that ruled out everything else.
So I gently mentioned to my family that I was saddened by their reactions- or lack thereof. They pointed out that it was ME that had told them that the diagnosis I was just given was not a real thing. And they apologized and asked what they can do.
The update is that the meds are working. I don't have to take a hot bath every night just so I can fall asleep. The fatigue has not changed much though. And I need to learn my limits. Went to City Creek with my girls one night including standing in line at Cheesecake Factory for 50 minutes- I could barely walk to the car. But at least now I know why.
And my apologies to everyone I judged when they said they had fibromyalgia.
