(Photo courtesy of https://www.facebook.com/fybromyalgiaandme)
I was diagnosed with Fibromyalgia in 2003 and I still feel like the only people that understand are the people that have Fibromyalgia, Lyme disease or CFS/ME. There are so many myths and misconceptions about these illnesses and so little understanding. Here are some of the things I wish people understood:
1. We are not lazy! Ask just about anyone with Fibromyalgia, and they will tell you that there are so many things they wish they could do but just can’t anymore. We wish we could go out and socialize more. We wish we could host holidays and birthday parties. (Okay, in my case that’s a lie. I hate having people over.) We wish we could keep our houses cleaner, volunteer at our kids’ schools, keep our lawn manicured and run marathons. We don’t want to lay on the couch and take naps every day. We do it because we have to in order to keep ourselves somewhat functional.
2. No matter what any stupid drug commercial says, Fibromyalgia is not caused by overactive nerves! That’s like saying heart disease is caused by shortness of breath. Overactive nerves may be one (of many symptoms) of Fibromyalgia, but it isn’t the only symptom, nor is it the cause. Much of my pain comes from physical structures within the muscles and connective tissue itself. Go to a good massage therapist and they will confirm that there’s something different about the muscles in people with Fibromyalgia. There’s a physical, palpable cause for some of our pain and our nervous systems are a whole lot more messed up than simply some nerves firing when they shouldn’t be.
3. There currently is no cure for Fibromyalgia! You might know someone who felt somewhat better after taking Cymbalta or Lyrica, or who says that going gluten-free helped them, but these people are still not cured. A decrease in symptoms doesn’t mean a person feels 100% better and can go back to being the person they were before fibromyalgia. Even when we say we feel “a lot” better, only a small percentage of our long list of symptoms has likely improved. So don’t expect that the person you know with Fibromyalgia is going to be cured if only they’d try _______ or do _______.
4. The drugs to treat Fibromyalgia only help a small percentage of people and have so many side effects that are often worse than what the drug supposedly “treats”. I read an article the other day that listed the percentage of people helped by Cymbalta, Savella and Lyrica. I’ve forgotten the exact stats (and unfortunately where I read this article) but the percentage of people greatly helped by these drugs was never more than 10%. The highest percentage of people couldn’t even continue taking the drug due to side effects. Another large percentage of people weren’t helped at all. So, don’t assume the person you know would be better if only they’d take whatever the drug du jour is. Chances are they could end up in worse shape if they did try it, so trust their decision if they weigh out the side effects versus the benefits and decide it’s not worth it.
5. Chronic pain in one area of your body is not Fibromyalgia. I think the most insulting thing I’ve ever heard anyone say to me is, “I have this pain in my shoulder. I think it might be Fibromyalgia.” No. No, no, no. And, really? You think that one ache is what has knocked me down? Fibromyalgia is not just pain, let alone pain in one part of your body. Fibromyalgia is a complex syndrome that affects multiple systems of your body. The nervous system goes haywire, causing insomnia, pain, and sensory processing issues. The immune system and endocrine systems can malfunction, causing a variety of hormonal and immune system abnormalities. The liver, kidneys, bowel and lymph system can become sluggish and toxic. There can be oxidative stress and mitochondrial dysfunction right down to cells in our body. It’s a system-wide malfunction, not a single ache in a single muscle.
6. Unless you’re reflecting on what you felt like on the first day out of bed while recovering from the flu, you DON’T know what Fibro tired feels like. This is one I’ve heard a lot: “I’m tired too.” Usually it comes as an argument about our choice to not do something because we’re tired. Tired is not the same thing for a healthy person as it is for a person with a chronic or serious illness. Do you find it hard to even move your arms, legs, head or even open your mouth? Do your muscles scream with fatigue from just walking from one room to another? Will it take you days, even weeks to recover from attending this event? If you answered no, then you have no idea how tired a chronically ill person can feel.
7. It can take days, weeks or even months for a person with Fibromyalgia to recover from a time of stress or overdoing it. A day out of the house usually means many more days on the couch or in bed for a person with fibromyalgia. We can’t just go out one day and bounce back from it after a good night’s sleep. (Not to mention we rarely get a good night’s sleep.) It can take a long time to recover our energy and get our symptoms under control enough to become semi-functional again.
8. Overdoing causes a hell of a lot more misery than just fatigue. Getting overtired causes our pain to increase, our sleep to become paradoxically worse and can cause a whole host of neurological symptoms. For me, feeling tired isn’t the worst consequence of too much activity. It’s getting a bad case of zombie brain, being unable to move my body or talk properly or even think semi-straight. It’s being unable to walk without bumping into walls. It’s lacking the attention span to read, follow a conversation or even watch TV. It’s feeling like I’m going to jump out of my skin every time I hear a noise. It’s the threat of these symptoms that keep me from taking on too much. I have a family to take care of. I need to be somewhat functional.
9. Being around people, movement and noise can be just as exhausting as physical activity. This another thing I feel like people don’t understand. Going to a social event where there are lots of people and noise wears me out just as much (or more) than as many hours of hiking would. It doesn’t matter if I can sit down the whole time, going to a party of any kind is going to put me out of commission, physically, mentally and neurologically, for days and days afterward.
10. Exercise can help…and it can also be utterly impossible on some days. Don’t suggest exercise to a person with Fibromyalgia until you’ve gotten out of bed to get on the elliptical while suffering from a bad case of the flu. Flu-like is often how we feel.
11. Brain dysfunction is part of the Fibro package. Not being able to remember words, names or where we even are does not mean we’re stupid. It just means our brain is dysfunctioning at the moment. The brain fog can be powerful enough to make us forget our phone number or our own name, so give us a break if we forget to do something.
12. We will never be the same people we were before we had Fibromyalgia. Chronic pain and fatigue change a person. They require you to get clear about who you are and what’s important to you. Even if the pain, fatigue and brain dysfunction were gone tomorrow, we wouldn’t return to who we were before. We know ourselves better now. We know our priorities and we know how to be more true to who we are.
And, lastly, we didn’t choose this, at least not consciously! If I hear one more person say something along the lines of, “they’re choosing to feel like this,” or, “they’re choosing to let it run their life,” I swear I will use all the energy I have in my puny arm to punch them in their judgmental mouth. Nobody wants to feel like this. I sure as hell don’t! But I am grateful for everything I’ve learned from this illness. I’m more patient, more understanding, more compassionate and more authentically me because of this illness. We all are and we could use some of that compassion and understanding reflected back our way.