"My disease is progressing. It's getting hard to cope."
"Oh my. What do you have?"
"Oh. Well. That's just silly, you just need to get moving again, you'll feel better!"
Now I feel silly for having even spoken.
Fibromyalgia is not just pain. I've struggled with this post. Rightly or wrongly I have been diagnosed with fibromyalgia for 11 years. I never wanted to be the fibro poster child. I never hid it and once in a while I'm moved to post about it, but preferred to let it sit in the background. I've tried a few ways to explain what this monster is, to varying degrees of success. Most commonly I am ignored. That is for a few reasons I'm sure. Answers that run from not wanting to hear the bad stuff to just being tired of hearing about it. People who live with chronic illness are known in the media as being huge complainers. If you have a sexy diagnosis of Multiple Sclerosis or Lupus, diagnoses that are well accepted by the community, or if you have something new that no one's heard of that you can teach others about, then you are heard.
Sometimes I believe there must be something wrong with how I present myself. So many people discount this huge thing going on in my body. Twice I've been in a position where my diagnosis was largely ignored as me being whiny until someone else in my circle of people was diagnosed similarly. It's as if my experience is somehow invalid. I've learned to expect that from the medical community, especially emergency services (don't get me started on the time EMS told me I was lying or the multiple times I've been told I'm a drug addict). That's frustrating enough, but it's worse when it's those you allow close to you.
People with chronic illnesses speak loudly and often. No one can see the battle we fight every day just to breathe. Medical professionals often don't have a reason why your body has decided to break down. We have to almost scream to get noticed, and then that very screaming is considered evidence that we're unbalanced, it's all in our heads. That reaction leaves me feeling guilty every day. Why can't I get out of bed at a "decent hour"? Why can't I just walk there, it's only a few blocks? Am I a good mom? What are my kids seeing and learning when mom is always sick?
Like most people, I've learned ways to make the world work around all my stuff. We all do it. Healthy and ill alike. We create patterns and habits around preference, finances, fears, and dreams. My world looks different because of my illness. If I were healthy I'd be labeled eccentric or lazy. Because I'm ill others feel they can judge me and my choices. It feels like they are looking for a way to tell me it's my fault. When someone is sick we look for reasons and therapy. Cold and flu are viruses, bronchitis is irritation or bacteria. But this has no reason, nothing to blame it on. It is easier to blame the person for bad things happening than to accept sometimes life happens.
Fibromyalgia hits each person differently and to differing severities. I've often said there is no one big answer and cure. There are hundreds as varied as the people who have it. For me, the pain, while no easy thing is the least of it. Fibro pain centers around 11 groups of tender points generally near joints in the soft tissues. It aches like arthritis and flares upon over use the same way, but is actually more painful. It's not painful enough that you can't learn to cope, but enough to make you exhausted with the coping. The pain moves around. Most people with fibro have one or more places that are always a problem but then the pain in the rest of the body comes and goes almost at a whim. On a normal day my pain is about a 5. That is half way between no pain and pain so bad you break your teeth clenching. When I take the right amount of the right medication I can get it down to about 3.
Think about that for a second. The average run of the mill non migraine headache is about a 4. A stubbed toe is like 7 and then aches at a 2 for a few days. So your stubbed toe is a person with fibro's best day. Imagine walking around all day every day with 20 stubbed toes and nothing you can do will fix it.
The pain is also different. Normal touches that shouldn't hurt do. A tap feels like a slap. Sometimes rough clothing hurts your skin. Sound which shouldn't "hurt" can cause physical pain. For me it's sound behind and to the side, even low level sound. The timbre of my husband's voice often makes me cringe. I back myself into a corner so all sound is in front of me and constantly tell people to turn it down. Bright light hurts more than just my eyes. You'll see me with sunglasses even on cloudy days sometimes.
This unremitting pain and exaggeration of stimuli is caused by my brain misreading the signals. I cannot force my brain to read them correctly. There is no behavior modification, or neurological therapy that will change how my pain centers experience pain.
Like I said, this is the least of it for me. I have learned to cope with the pain. I actually have a higher tolerance than most because my body has been trained that extreme pain won't kill it. I don’t like pain and will cry out like anyone else but my body has ceased catastrophic systems failure that high levels of pain cause. That said, it's still not fun and I'd give much to not be walking around like an open sore all the time.
Next, like most neurological issues, is brain fog. It's hard to describe. We all feel funky at times, lack of sleep or need that first cup of coffee, but this is different. I can only tell you what I experience from the inside. I will sit on my bed because I need to get dressed. I know this has to happen. I can see my clothes. I can't tell you if they're clean or not. I might not remember the name of the color. I will hold my jeans in my hands thinking, "How do I put these on? I need to put these on…" Every task during this time takes a lot longer and leaves you feeling exhausted and frustrated. When I say I'm in a fog, I mean it. I won't be any good to anyone. It really is like standing in a grey mist, sounds muted, vision blank, even the air feels heavy. Once in a while if you wait you'll catch a glimpse of reality. A bright spot where you know the brain works but can't quite get there. There is no medication or regimen for this.
The thing I hate the most is costochondritis. It is chest pain near the heart. It's actually an inflammation of the muscles around the ribs where they connect to the sternum. It feels like a lead pipe going the center of my chest to my back. Movement hurts, especially changing position, anything that ups the breathing rate makes it worse. Breathing, talking, even eating are especially hard. My pain hits 9 easily during these episodes. For years I had no idea what it was. No doctor could tell me. I'd call in about this horrible chest pain. They send me to ER, ER rules out heart, accuses me of just wanting drugs, occasionally gives some to me for comfort, and sends me home.
Restless legs is my enemy. I can't stop moving. It's more like restless body syndrome. I’m always bouncing, moving, twitching. To stop actually hurts even as the exhaustion of the constant movement sets in. If I spend time to think about it, I can make it stop, but as soon as I am concentrating elsewhere it starts again. This makes bedtime dreadful. Worry over shaking the bed and waking my husband, taking hours to not get comfortable and waking up frequently only to have to go through the same process of flopping like a dead fish to get to sleep again. Thank gods there is a medication for that…when it works.
Sleep. Sleep is my frienemy. I love sleep. I need it so badly. I am constantly tired. On average I need about 10 hours of sleep to be functional. But then I oversleep and miss things that I felt were important for the day. It takes an hour at least to even try to get up. It takes 2 to fall asleep. Sleep aids do and don't help. The pain medication wears off before the sleep medication, which means I wake up basically paralyzed in pain. Not fun. Sleep is where people get the idea I'm lazy. I keep crazy hours because I work nights, then I can't sleep until the kids are off to school then I can't get up until it's almost time for them to be home, then I didn't get enough sleep so I'm not at my best, it’s a vicious cycle and leaves me basically a vampire. I've heard many "jokes" over the years saying "If Susan can get up…" or "Let me guess, she's still asleep." If I could just be allowed to sleep the way I need to sleep without having to hear those things I would be a much happier person. It's exhausting to know what your body needs and then to deny it in order to fit what others are imposing upon me. I know that what others think of me is none of my business, but you can't always shut it out.
Raynauds is not strictly a fibro thing but it is common. Magic color change toes! Raynauds can affect toes, fingers, nose, and ears. What happens is stress or even a cool breeze or air conditioner triggers a hypothermic response causing the body to remove blood from the appendage. Your toes or fingers turn white or blue in response. There's nothing that can be done. It just happens. It does not cause permanent damage. It's more annoying than anything else. I’m cold all the time. It will be near 80 degrees in the house during those stubborn late spring days when you're avoiding turning on the air, and I will be using a heating pad on my feet. I live in shawls. Even working the mouse on my computer can set it off. Winter in Wisconsin may have been a mistake.
Migraines. If you’ve ever had one, no explanation is needed. If you haven't, no explanation will suffice.
Irritable bowel syndrome. Certain foods will make me very sick for no good reason. Extreme stomach cramps, constipation and diarrhea taking turns. This is largely controlled by diet, but can cause some serious issues if not kept in check. If an attack goes on too long it can cause sores in the bowel which can bleed. Bowels can also become impacted. So I'll stop there before it gets too gross. You get the point.
My fibro symptoms are resistant to medication. Some people get relief from various medications, diets, or natural medicine. I get so tired of being told, my best friend did this, or I tried that and it was great! Each person is going to react differently. You don't know that I have or haven't tried this or that or that it will work for me. I have been on many medications from weed, nerve mediations. Only one has had any effect. However, that one medication only helps with a small portion of all I experience. I watch what I eat to a point (I still like food). I'm into yoga and tai chi and belly dancing. But the symptoms are pervasive and all encompassing. And it's getting worse. I don't know yet if this is a random cluster flare up that happens or if my disease is truly progressing. It's taken from me energy, thought, ability to do basic things like grocery shop, it's even taken the sun. What else can it take from me?
I still feel silly. Like it's all in my head. Everyone seems to think it is, right? But that's the reality. My disease is progressing and there is nothing anyone can do to fix it. I will have more pain. I will have more fog. I will have constochondritis more often. I will need even more sleep.
But all I need to do is get out there and move some more, right?
Susan is a plural writer and artist by day, a child and pet wrangler by night, and occasional crazy person on the weekends.