No one ever expects the mole!

When I suspected, and was finally diagnosed, with fibromyalgia, I thought I knew what that meant. I was going to be in some amount of pain for the rest of my life, along with an extra helping of mind-numbing fatigue. I checked with my Parents with Pain group, and it seems that I am not alone. We were all completely blindsided with various bizarre symptoms. It’s a cruel game of Whack A Mole; different symptoms and disorders pop up when you least expect them. And at times we feel like the moles have revolted, grabbed ahold of the mallet, and start to beat us back.

20140630-095431-35671610.jpg
Image by ccc7ccc at Deviant Art

Here is a list of just some of the bizarre indignities and medical nightmares we fibro people are forced to endure.

Muscle spasms
I think it’s safe to say that everyone has experienced some sort of muscle spasm at some point in their life. They range from tiny twitches in one’s fingers to backs seizing up, because you didn’t have anything better to do that day, did you? In hindsight, I realize that I experienced my muscle twitching years before I even knew that fibromyalgia was a thing. They start small, almost indiscernable, just a thumb barely moving involuntarily. When you try to show someone else, they don’t see it. You feel stupid and they decide you’re an attention-seeking idiot.
But now, there’s no denying the sudden moves my fingers make. Sometimes they keep me up at night. All to often, I’ll have almost drifted off into dreamland, when my index finger decides that it would rather point at my headboard. The stomach spasms are ones I never expected. It feels like being pregnant all over again, or like I’m incubating a tiny kick boxer.
It’s also way too easy for my muscles to spasm and stay locked so that I can’t move. I have literally looked the wrong way at the wrong time and landed myself in bed for two days because moving my neck was impossible without screaming bloody murder. On the plus side, it gave me time to watch and become addicted to Sherlock.

20140630-101633-36993066.jpg
I’m so glad Molly is also sick of my muscle spasms.

Night Sweats/Temperature Sensitivies
Sometimes I wonder if I should just bring a squeegee to bed with me. It doesn’t matter if I’m barely dressed and uncovered, I will still wake up in the middle of the night, drenched. Once I’m able to peel my face off my soaked pillow, I wipe off the small lake that had accumulated between my legs. There are plenty of good reasons to be wet in between your legs. This is not one of them.
To go along with the night sweats, sweating in general has become a thing. My fellow fibro folks have recounted tales of walking from their car to inside of a store and finding themselves turning into puddles. For me, the best part is stepping outside and immediately having a sweat mustache and soaked hair all around my hairline.
We also deal with sensitivity to cold. Along with being in more pain when it’s cold outside, my body has now decided to freeze at 73 degrees like it were 33 degrees in the house. I have heard other spoonies say that heat and humidity make their pain worse. Some of this is due, no doubt, to…

Swelling
The only time anyone should wake up and not feel alarmed by their giant hobbit feet is if they are, in fact, a hobbit. Tight, swollen feet are uncomfortable all by themselves without adding the enormous feat, (see what I did there?) of walking. Normally slender fingers also turn into sausages, making it difficult and painful to engage in normal activities…like picking up a cup to drink.

We can’t stay in one position for too long
One of my spoonie comrades said that if she stays sitting for too long, her tail bone swells. Sometimes with fibro, you just can’t win. If you lay down and rest for too long, it’s murder to get up and put weight on your feet. I have seriously felt like I was in some sort of physical comedy show where they immediately collapse upon standing. It’s so funny that you laugh until you cry….and cry….and cry until you ugly cry so that snot is all over your face and now you have a massive headache and have to try and stand up yet again. Ahem.
So, just don’t lay down, you might say. That’s all well and good, except, after standing for awhile your legs become tired and sore. Perhaps your back also gets in on the action. Soon after, your hips are like, Fuck this, I’m out, and give out on you so that you’re unable to put weight on them, which forces you to limp everywhere.

Neurological issues
Dizziness is pretty common. Fortunately for me, I don’t experience it constantly. But when I do, it is one of the worst feelings. Have you ever seen someone swirl soft serve ice cream or frozen yogurt onto a cone? When I’m dizzy, I feel like I know what it’s like to be that ice cream. I feel a sudden whoosh upward, starting at the bottom of my head and quickly swirling upward, so that my whole head is engaged before it’s over.
I consider myself to be a decently intelligent human being. However, all too often you’d never know it because of how stupid fibro makes a person. As a dear friend used to say, I can’t brain today. I have the dumb. Everyday, we wend our way through thick, goulash fibro fog. Once upon a time we may have been able to organize our thoughts easily. Now, they flutter out in foggy space as we try to corral them with slow-moving nets. We have difficulty finding, (or as I say, making) words. Sometimes we’re like a fibro-ridden Tantalus; words are there, just out of reach, and we are unable to grab them and send them to our tongues. Other times, they completely elude us.

20140630-112500-41100597.jpg

We become hypersensitive to stimuli. Screaming children pierce our eardrums. Too many people talking or things going on at once overwhelm us and make us want to cover our ear, close our eyes, and shut down. Sensitivity to light, smells, and startling events just add to the cacophony of stimuli issues.

Itchy, itchy, ITCHY!
I’m highly allergic to poison ivy. At Rachael’s first birthday I had it so bad that it almost took over my eye. I’ve also been introduced to the misery of PUPPPS. I had it for 20 weeks, (no, that’s not a typo) while I was pregnant with Zoë. Rather than just being confined to my belly, it was all over my body: my face, my neck, my arms and hands, even my butt.
None of this prepared me for the ridiculousness that is fibro itching. Without warning, it will suddenly pounce, sending you on a scratching frenzy. And it doesn’t stay in place. Oh no. It likes to play itchy tag. Now I’m on your leg! Yoohoo! Over here, on your butt. Ooh, I haven’t been to your palms lately. My itch attacks generally strike when I’m trying to go to bed. They also really like to torture my feet, which makes quietly scratching so as not to disturb Mike as he’s falling asleep nigh impossible. I’ve broken the skin from the intensity of my scratching.

Costochondritis
Costochondritis is a comorbid disorder that manifests itself by the swelling of the muscles in your chest. If you’re not familiar with the pain, you will worry that you’re having a heart attack. In fact, I feel like I’m playing heart attack roulette every time I have an episode. I worry that one of these days it will actually be a heart attack that I have written off as costochondritis. Moving and breathing during an episode intensify the pain. Stress also makes it worse. I take prescription strength anti-inflammatory twice a day to stave off the pain. And now I worry that some day my wrecked intestines will bitchslap me for it.

Interstitial cystitis
Imagine feeling like you have a urinary tract infection all. the. time. That’s the awesome that is interstitial cystitis. I feel like I live in the bathroom with the number of times I pee in a day. I just peed five minutes ago, and my bladder is already hurting. I often sit on the toilet for several minutes, just waiting for my body to let it go.

20140630-120608-43568694.jpg
Original image by lollipop at Deviant Art

Seriously, you could create a fade time lapse sequence while I sit and wait to pee. First, looking around to see what’s new in my bathroom, (nothing) and deciding if I want to paint the walls a new color. Fade to clipping and filing my nails. Fade to checking Facebook and Twitter. Fade to rage posting something from Jezebel. End sequence with me pushing out the pee like I’m giving birth. Aaaaaand, scene.

There you have it, folks. A not even nearly comprehensive list of all the extra BS we spoonies get to endure along with the pain and fatigue of fibromyalgia. I’ll end it here because I don’t want to bore you to death. Also I have to pee….again.

Invisible illnesses in search of legitimacy

20140430-083749.jpg

You sit in a small exam room, waiting. The air is stale and you notice how thin the walls are as you overhear the appointment next door. It’s not entirely comfortable sitting on the exam table, but you sit there and read the policy on HIV testing and try to pronounce sphygmomanometer for the tenth time. Suddenly, there’s a quick rap at the door and a doctor bursts into the room. Tapping away at his laptop, he asks you what happened. You explain how you broke your arm. He looks it over, types some more, and then tells you that your arm isn’t broken. In fact, you only think it’s broken because someone punched you in the arm when you were a kid.

Record scratch

Sounds pretty absurd, doesn’t it. Yet, this is exactly what happened when a young man called into the popular radio show, Loveline, recently. The young man was calling about his fiancé, who experiences pain because of endometriosis and interstitial cystitis. Rather than assist this man in his question, Dr. Drew Pinsky proceeded to assume he knew all and simply dismissed this woman’s pain and diagnoses. He basically called her a hypochondriac who wanted attention and was most likely sexually abused.

These are what we call sort of functional disorders. Everything you mentioned, everything you mentioned, are things that actually aren’t discernibly pathological. They’re sort of — they’re what we call ‘garbage bag disorders,’ when you can’t think of anything else, you go ‘eh, well it’s that.’ So it then makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pains and urinary symptoms and pelvic symptoms, and then that makes me wonder, was she sexually abused growing up?

No, I think he’s kinda like Dr. Pepper.

Besides the obvious, What the actual fuck?, let’s break down why what Dr. Drew said is so harmful.

1) It trivializes and delegitimizes invisible illnesses.
It took almost six years before I received a diagnosis of fibromyalgia. In my experience, I learned just how arrogant doctors really are. If they can’t quantify it with an MRI, blood test, or observation, then it can’t possibly be real. Dr. Drew’s comments reflect this attitude within the medical community. This attitude prevents those with invisible illnesses from receiving appropriate and timely medical care.
It would not only prevent the doctors from providing the care, but could inhibit those with these illnesses from seeking treatment. I’ve spoken before about how a neurologist yelled at me when I was disappointed that he couldn’t figure out what was wrong with me. That experience was the final straw and caused me to discontinue seeking help for the pain I was experiencing.
It also perpetuates a lack of legitimacy for these illnesses throughout the population. So many take a doctor’s, (and celebrities’) word as gospel truth. If a doctor says that there isn’t any such thing as fibromyalgia or chronic fatigue or interstitial cystitis, then it must be true and it’s all in your head. Such attitudes from the people we encounter on a daily basis cause those of us with invisible illnesses to withdraw and keep hidden the pain that plagues us. Silence and misinformation feed stigma and negative attitudes.

2) It trivializes mental illness.
People like Jennifer Marshall work tirelessly to combat the stigma of mental illness. It is because the stigma is so pervasive and virulent. When people like Dr. Drew lazily ascribe a person’s experience to mental illness, the weight and legitimacy of mental illness is lost. As people become armchair psychologists, any and all negative feelings and experiences become diagnosable psychological problems. Mental illness suddenly becomes something that people simply need to get over, lending itself to a Barney Stinson sort of attitude.

20140430-094343.jpg

Again, misinformation about what is truly means to have a mental illness leads to negative attitudes and stigma.

3) It trivializes sexual abuse.
Too many people are the victims of sexual assault and abuse. It is not something one should take lightly, nor bandy about as the source of all things wrong in someone’s life. To take someone’s experience and twist it to fit the story they’d like to tell is nothing less than victimizing the victim all over again. In this scenario, Dr. Drew downplays the horrors of sexual abuse by treating it as some sort of virus one catches which causes problems later, rather than something that is done to you. Problems with your vagina? Well, you must have caught sexual abuse. It is insulting that Dr. Drew presumes to know better than this woman and her fiancé about her unique experience.

So, let’s summarize what Dr. Drew said.
You have a problem with your lady bits? Well, I don’t believe that those are real problems, so you must have caught sexual abuse. I know this because you are exhibiting symptoms of sexually transmitted crazy person. Take this diagnosis and get over yourself.

Such ignorance should not send those of us with invisible illnesses and experiences to the shadows to remain invisible ourselves. It should make us angry. It should compel us to speak out and educate those around us about our experiences. Refuse to be bullied into silence or feeling like we don’t know our own bodies. If enough of us push back, perhaps people like Dr. Drew will be cured of their inflated ego. Although, I have heard of a medical procedure in which it is possible to transplant some of that ego from their head to far up inside of their ass.