Secrets of Fibromyalgia

Sometimes, I am standing at the sink. I may be brushing my teeth or washing up, but I am struck by the pain I feel. That pain makes it impossible for me to stand for more than a few minutes.

I have fibromyalgia and Central Pain Syndrome. The fact is that it amplifies any pain that I feel. My pain is worse than it should be. The doctors don’t know what, and researchers are having a hard time figuring out why this phenomena exists. Some researchers have found certain genetic strings that are common across patients with fibromyalgia. Doctors nor researchers have any answers that are agreed upon by everyone.

This lack of understanding of the etiology of fibromyalgia makes healthcare more difficult for fibromyalgia patients. We can’t say definitively what is causing our illnesses. We can’t point to research. We can’t even find a treatment that works.

There is no getting “over” fibromyalgia. It’s permanent, there is no cure. There is nothing visible about fibromyalgia. No matter how sick you are, there is no way that another person can see your illness.

They might see your slumped shoulders, the pain is in your eyes, yet they cannot see any discernible reason for your hurt.

You know what that means. You will see doubt in others’ eyes. Is she really sick? Is she trying to stay in bed? Is she faking her disability? Friends may sit down with you and talk about their own injuries and say things like “this is a real disability”. You may suffer these conversations quietly and even with grace. It won’t matter at all. You will suffer through a lot of criticism.

The cost of the illness is high, it’s physical and emotional. While you never heal physically, you won’t get a chance to heal emotionally either. Not in the way you’d like.

You’ll have to figure out how to change your life, it’s small at first, then it changes to the bigger things. Your doctor’s appointments will become more frequent. Your bloodwork will become often, and you had better have great insurance.

If you don’t have great insurance, be prepared to have infinite delays in your health care. The insurance executives will bounce around decisions about how to care for your health problem. You may suffer in pain for months while your insurance company contemplates which types of treatment are the cheapest, or do you really need pain relief?

There comes a day when you realize that you cannot work. Perhaps you have comorbidities (the doctor’s way of saying there is more than one thing wrong with you). You feel better from one illness and then the other illness knocks you down. The hardest thing is that you never know the source of pain: is it my fibromyalgia or is my stomach really tearing itself apart?

If you have energy, you begin to guard it jealously. You don’t want to spend your energy on anything that you feel is a waste. There is a limit to what you can accomplish in a day. The worst part about it is that your identity changes. You may go from the strongest person you know to someone who is very limited in physical ability. How do you tell your brain that what was you is no longer you? What is good about you? Your family values include working hard! Can you do that? If not, why not? Justify yourself…

This criticism may well be internal – it’s not coming from someone else. You’ll have to struggle through getting a new identity. While you are doing that, there will be periods of denial. I’m feeling good today, maybe I am not that sick, maybe I can go back to some of the things that I used to do. You may even get away with a few experiences, I did. I used adrenaline and boy was it great. And then the bottom dropped out. I couldn’t get out of bed; my fatigue was awful. The best I could do was to read a book. Sometimes it’s worth it and sometimes not so much.

At some point, acceptance does occur to you. Trust me, this feeling won’t last, but while you have it, you have the opportunity to remake yourself as you are. Wishfulness goes away and you tighten your world around you and find value in what you CAN do. If what you CAN do is walk across the room and make a bowl of cereal, then that is what you CAN do. Gratitude for yourself helps.

Who you were is not who you are.