I have fibromyalgia. What a stupid name. It’s bad enough that I decide to have an invisible disease that many people still think is a crock of doo doo, but can’t it at least have a cool name? Lupus is good – easy to say, sounds kinda cool and “wolfy”. Cancer – simple, to the point, and you know from the name it’s bad ass. Plus everyone knows what it is, so good on the branding aspect. Heart attack – not very clever, but still, relatable, people get it. Your heart is attacking you – doesn’t take a brain surgeon to understand that one. (heh heh heh)
Granted, better NO disease than a disease with a cool name…but if you have to have one…“Fibromyalgia”…blech. Definitely doesn’t roll off the tongue, and does NOTHING for your street cred (says the incredibly white 52 year old woman).
What Is Fibromyalgia Anyway???
The name was derived from the Latin word “fibro” (fibrosis tissue), and the Greek terms for “myo” (muscle) and “algia” (pain). https://www.healthline.com/health/fibromyalgia-real-or-imagined#history
It has become clear to me over the years that the medical community doesn’t REALLY know what the fruck they’re talking about when it comes to this crap storm of symptoms called Fibromyalgia. Getting that diagnosis really doesn’t help much, let me tell you.
Fibro is basically a grouping of a variety of different symptoms that have no other explanation. It involves a varied expression of pain and fatigue, usually widespread, as well as a few other things like sleep problems, mental fatigue or “brain fog”, sometimes memory issues, and depending on the person, the doctors might throw some other things in there as well, like Irritable Bowel Syndrome, depression, anxiety, etc. In other words, it’s a catch all for what ails ya when they can’t figure out what ails ya.
For me, one of the worst parts of the disease is that at its core it’s a liar. It is my central nervous system telling me there’s a problem where there isn’t one.
The functional result is that I’ll feel an extreme and sharp pain in my thigh, for example, which upon examination is a result of nothing but nerves firing for no reason. I feel aches and fatigue throughout my whole body that in a normal healthy person would be an indication of the flu or some other REAL illness – but those aches in MY body mean nothing – they are simply another lie.
They Told Me “Things Will Never Get Better”
It has been my experience that every physical symptom I have ever presented after the fibro diagnosis is discounted or disregarded. At one point shortly after I was diagnosed with fibro, my arms literally stopped working for about 5 weeks. I had spent a few days painting the basement, and my arms just quit. This had to be something REAL wrong, right??? The guy who was my rheumatologist at the time told me that this symptom was “consistent with fibromyalgia”. He didn’t even try to find out if there was anything else going on.
My husband had to cut up my food and sometimes even feed me for almost 5 weeks, before my arms started to work again, and I was supposed to accept that this was just my life now, nothing they could do about it…prepare to be this way and worse until you die.
For the record, I refuse to believe this, and still try to find ways to feel better and be more functional. Maybe after 20 years that makes me delusional – and it does seem, at the moment, to be a losing battle, but that doesn’t mean I’m done fighting…yet.
My Body is a Wonderland, Alright
Wonderland in the “I wonder what the hell happened here” kind of way.
“I wonder if I’ve been changed in the night. Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is ‘Who in the world am I?’ Ah, that’s the great puzzle!”
― Lewis Carroll,
So what happens, when your body has been lying to you for almost 20 years? Well, for me, I stopped trusting it. The pain is still there – it stops me from functioning in any kind of reliable way on a daily basis. However, since I can’t trust my body, and I can’t trust doctors, I just stopped seeking medical intervention. For the most part, it was just a waste of time and money.
In my house we talk about “real” pain vs. “fake” pain – even though it’s all pain in MY brain. For instance, I have “real” arthritis, as well as two herniated discs in my lower back and degenerative disc disease that has already affected about 6 discs in my neck and several above the herniated discs in my back. Unfortunately, fibromyalgia turns up the volume on all kinds of pain and discomfort – so I never actually know if something requires medical attention until I’m flat on the floor unable to move.
When Your Body Is a Liar, It’s Easy to Stop Listening
When I have physical pain that is real, I am well into crisis before I pay it any attention at all.
A few years after I was diagnosed with fibromyalgia, I ended up in the ER after almost 24 hours of a debilitating headache and weirdly stiff neck that just kept getting worse and worse. After a full day of worsening symptoms, I put myself to bed “early”, but the pain wouldn’t let me sleep. I finally woke my husband up at about 5 a.m. the next morning and told him he might need to take me to the hospital. He had learned, by that point, that if I was admitting I might need help, it was well beyond questioning.
He rushed me to the ER, and by the time the doctors could see me I was puking over the side of the gurney and pretty much out of my mind. We found out that I had bacterial meningitis. I was hospitalized for 5 days, and apparently I almost died. The doctors told my husband that had we waited even a few more hours, it might have progressed too far to respond to treatment.
I remember two things from that particular stint in the hospital. One was when my husband brought our then 6 month old Great Dane “puppy” into my hospital room in the middle of the night. THAT was truly healing – big ol’ goofball wagged so hard he almost flipped himself over, and had to get up on the bed with me, he was so happy to see me.
I also remember that my kidlet thought it was all great fun, and to this day likes to laughingly recount some of the things I said while out of my mind on the drugs they were pumping into my body. Hubby did a really good job allaying any of the kidlet’s fears and making it all an adventure.
What Was My Point, Anyway???
Why am I even talking about this? Do I just want attention and sympathy? Maybe – a little attention and sympathy aren’t necessarily bad. But I don’t think that’s my core motivation here. I think it’s more about trying to make the invisible, well…visible. I want to create some understanding for people who don’t or can’t know what living with an invisible disease is like.
I’m really self conscious about all of this, so it’s actually a little hard for me to talk about. I’m self conscious about almost everything, truth be told. I joke about it a lot, but I feel humiliation beyond measure about my weight despite my knowledge that it is a symptom, rather than a cause, of my illness. I get embarrassed when I walk with a limp.
I almost passed out in the produce section of the grocery store one time because I was trying to do too much, and a really sweet, lovely, compassionate grocery store employee asked me if they could help me. I was mortified. I sat in my car afterward and cried, both from how kind she had been and from pure humiliation that I couldn’t even do one, simple, SHORT trip to the grocery store without almost keeling over from pain and fatigue – and someone had NOTICED!
I used to refuse to post any recent pictures of myself on Facebook, because someone who knew me when I was healthy might see them and cringe at what has become of me. I’m trying to get over that. That’s part of what this blog is, for me – kind of “outing” myself, in a way. I don’t want to hide anymore – the hiding has been affecting my life in really negative ways. I’m tired of worrying about what others will think of me.
Maybe that’s my point with every post I write – not just this one. Whether snarky or bitchy or sad, or the occasional glimpse into the more useful things I do to help me be “OK” in my life – it’s all about stripping down and being naked and unafraid. I think many of us expend too much energy fearing what others might think of us – and we don’t even KNOW what they actually think! We’re just making it up, most of the time.
If we could all just “let it all hang out”, we might realize that we all struggle, we all have our challenges, and whether our problems are invisible and have a stupid name, or are highly visible and out there for anyone to see – we’re all just dealing with life the best we can.