By now I’m sure you’re wondering, “What’s this fibro thing this chick keeps complaining about?” Well, it’s Fibromyalgia. It is a chronic illness, I’ve had it since I was 12, and it sucks.
Fibro affects my nervous system and muscular system, interpreting extra signals sent to my brain as pain (burning, tingling, aching, stabbing) and causing my muscles to constantly stay tensed and in spasm. The pain is often random and moves throughout my body to different places on different days, and even the intensity of the pain can vary from day to day. Usually there is no real reason for the pain, but things like the weather, stress, and physical exertion can bring on a flare. It leaves severely tender areas all over my body, and if you were to simply press on one of them with just one of your fingers you would instantly bring me to my knees.
Fibro pain, even when no one or no thing is touching me, can be excrutiating enough to warrent multiple trips to the ER. Most days, though, it feels like I always have the flu – exhausted, achy, and even my hair hurts. But then I have good days where I feel almost normal – and that is what confuses so many people, including the medical community.
Fibro can be linked to a compromised immune system and major sleep disorders. This causes me to be constantly exhausted no matter how much sleep I get. My muscles also never relax while I sleep, causing more pain and more tension throughout the day.
I experience periods of “fog” where blood flow to my brain is diminished and, consequently, I have trouble thinking clearly. I can become unbelieveably forgetful, even getting lost in familiar settings or not recognizing familiar people. If ever I do not recognize you, call you by the wrong name, or generally not remember things I should, please do not be offended. For once in your life you can be put at ease when you hear “It’s not you, it’s me.” Forgetting your name or face is not an indication of your importance in my life or of negative feelings towards you – it is an indication of my disorder.
The bad news is there is no cure. Yet.
There are some medications available, but nothing that takes care of all of the symptoms. Many fibromites end up on endless supplies of narcotics or opiates for pain control, while some find relief with antidepressants and anticonvulsants that help manage brain chemistry and keep those “extra” signals from being interpreted as pain. I myself have been through all the different medications to no avail. Physical therapy and a good massage therapist are my prescriptions, but even with their help I am severely limited in my daily activites.
And fyi, my massages HURT.
The good news is that fibro will not kill me. It does, however, restrict my life and my functional capacity greatly, and I will always have it. It can be very alienating because I appear to be just fine on the outside, and this causes people to sometimes make hasty judgements about the severity of my illness and my pain. It is very hard to keep up an active social life, or even an inactive one, because I constantly need to rest or am in pain so I’m either cleaving early or canceling at the last minute. Currently it is impossible for me to work.
I have to be very careful and actually plan out how to spend the little bit of energy I have each day so as not to overwhelm my body and bring on a flare or more pain than I already have. Every day brings a different energy level and pain level, and sometimes I run out of energy before I even get dressed.
I’ve had a lot of time to get my mind right regarding fibro. Thinking positively will not cure me or take away my pain, but it does help to keep me from adding any additional and unneccessary stress to my life that could show up as extra pain or other symptoms. Staying connected with others who have fibro keeps me sane, or rathet it reminds me that I’m not insane, while keeping friends who I never talk with about fibro keeps my toes dipped in normalacy. And of course writing helps just about everything.
I coined a name for myself many years ago that I am very fond of – “Fibronaniac”. (For 20 years my body ached. For 15 of those years I thought I was crazy. Now I know that I’m not crazy; I’m just a fibromaniac.) You may have seen my old blog of the same name or found me on other social sites registered under that name. Not every fibromaniac is me, as sometimes a good idea comes to many people at once, but most of them probably are. Feel free to ask.
If you would like more information, please check out what Mayo Clinic has to say about Fibromyalgia. If you would like an excellent description of how I live with fibro, please read Spoon Theory. It is perfect.