My Fibro

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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.

this is my art; this is how it feels

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.

3 thoughts on “My Fibro

    1. Thanks for sharing, Carla. I can’t seem to get the page to work so I can read it – I might have to wait until I go visit someone who has a real computer as opposed to my mobile device. It just doesn’t want to open for me. :/

  1. It’s from Veronica Moore, written in 2011. Here is the story (sorry it’s so long):

    Since being diagnosed with Fibromyalgia a few weeks ago, I have noticed a decline in any interactions with most of my friends and family, mostly due to the part of MY constant pain. I have one friend who has stuck beside me through all of puzzlement of Fibromyalgia, but while yet still not understanding fully what my day entails. I have told her of the Constant Pain, the Fatigue and the Fog, yet still I don’t think she understand, I even have shared the Spoon Theory which was written by Christine M, a lady with Lupus, with her as well as many many others.

    But with Fibromyalgia, because of the PAIN, I needed a visual to really hit home to a point where she, as well as others and doctors would understand. Then God gave me the “Toothpick Theory”. Now, I normally keep toothpicks in my purses, and sometimes, I forget they are there and upon reaching for something in a different purse (because I changed purses almost daily), and because my bags were so HUGE, I would always get “stuck” by a toothpick. It was a reminder to me that the toothpick was unsuspecting and yet painful. The toothpick is a constant reminder of the pain, sometimes, I am aware and more cautious, however there are those times when the pain is so great, the FOG is so thick, that I forget the toothpicks is in my purse/pocket. Imagine getting up in the middle of the night for some water, I say, only to find a toothpick in the dark lodged in the carpet. Although you are stuck either in the finger, hand or foot, the pain ravishes through your whole body. All the while verbalizing that she understands as I am explaining what this pain that is consuming me is doing to me, to my life as I knew it.

    If you are like me, you carry several toothpicks and I am guilty, but I do sometimes use a toothpick and toss it back in my bag, only to get stuck again by it. Now in looking at the toothpick in relationship to the Fibromyalgia disease that affects some 10 million people, mostly women who are in their prime of life, and is even attacking women now, in the younger years and a few men.

    Imagine, I tell my friend with this Invisible question mark of confusion on her forehead, having a BOX of toothpicks in your hand, that you are conscious of holding onto, you know one thing: You are in pain and your pain is connected to the toothpicks, PAIN we will call Fibromyalgia, even if you put them down or toss them, the fact still remain, the PAIN is on your mind, and you try to be careful not to repeat what you have done that caused THAT pain, whatever it may be, but because the pain is coming so rapidly, you have no idea WHAT, WHEN or WHERE it really originated from, that alone consumes several toothpicks because you are experiencing PAIN, all the time. Now what if each toothpick is assigned to a body part, a muscle, a fiber, a tendon, a bone, a joint, every fiber of your being? You may not get attacked by all the toothpicks at once, but there are days when you are unsuspecting, you get attacked by several at once. The toothpick may produce pain in your back, your hips, your knees, your arms, your hands, your legs, your thighs, any and everywhere. Your head, neck and shoulders usually go hand in hand. You are hurting so bad, so much, that you are losing sleep and can’t get up and move around to even go to work by now, because everything hurts!

    You have a toothpick for constipation and IBS, a toothpick for chestpains. There is another for the itching of your skin and the sensitivity of just wearing light clothing. You have a toothpick poking you for the rash on your foot that won’t go away, and a toothpick for your migraine. There is a toothpick that is assigned to outburst of crying because you really don’t know what is going on in and with your body and one for the FOG that is poking your thought and reasoning process and yet another toothpick POKING you because you have started having little flashes of lightening rushing through your brain, that you now are being tested to see if you have had any TIA’s also known as MiniStrokes. As she asks and I explain to her what a stroke is, it is in being when your brain is not receiving oxygen, or maybe a blood clot that burst. I asked her if she remember her son being born without receiving oxygen and the effects it had on him, and how it affected his speech and thought pattern, yet he is still able to function as an otherwise “normal” person, and she said yes, I said, that is what a Stroke does, it affects your speech, so sometime the pain is so intense we know what we want to say, but have trouble saying it or lose our thought in the middle of a conversation.

    You have a toothpick that is causing you to have dry eyes from out of nowhere and a JAW that is constantly Clenched. You have several toothpicks that has somehow broken and with their jagged edges their name is called STRESS, and it is taking you through a metamorphosis, because now it is affecting your attitude, your mood, you are slowly getting more and more depressed, even to the point of hopelessness, it is causing your blood pressure to rise, feelings of having a heart attack and even some anxiety, and this is only the beginning. You may have gotten rid of the toothpicks, but the truth of the matter is there are some you have overlooked, you willed them to be gone, you prayed for the pain to go away, but there is still some attached to you. And even though you were a Professional or maybe even A Minister, a Bible Study Teacher, PAIN still came and God did not remove it, but rather told you that there was a Purpose for YOUR pain…. These toothpicks attacks Nurses, Preachers, Teachers, Mothers, Students, Men, Women and some Children, Golf Players, Social Workers, Pharmacists, Actresses, and even Doctors just for beginners.

    Then you have family and friends, some who tell you to just take some supplements or vitamins or get up and exercise and you will feel better, or they offer their unsollicited advise of what will work or what will cure THIS, even though there is no cure, and they have not walked ONE day in THIS kind of pain, BUT because you don’t have the strength or energy that the PAIN has sucked out of you, you don’t even offer a rebuttal, you can’t. Toothpicks! Because they say things, THAT HURT! They tell you to pray when the truth is you never STOPPED praying. They tell you that you don’t look sick and THAT, is a toothpick in your eye, because this time, it’s your doctor, or a toothpick in your heart, because your own family telling you, it’s all in your head. But they never stopped to realize, you are holding toothpicks because you haven’t seen or talked to them in months, because the PAIN has driven you to a place of seclusion and isolation. Toothpicks! To my friend I say, everything that now affects me be it physically, emotionally or spiritually is like being stabbed with toothpicks in every part of my body, everyday, all day. And though I can pull one out another emerges with another name, another diagnosis. For some reason, one pain surrenders while another runs rampant through my body.

    Toothpicks have caused me to decline working, even though I am still of workable age, toothpicks have caused me to apply for Social Security way too soon, and/or foodstamps, Toothpicks has stopped me from going to church regularily, because people want to hug, and HUGS HURT. Toothpicks has caused me to have to refuse the family reunion, the Sunday dinners, most activities that involve a lot of walking or thinking, toothpicks has caused me everything…. But has increase my Hope, my Faith and my Trust in God, who is Bigger than this monster.

    I pray that those who are suffering with Fibromyalgia, or any other debilitating illness that preludes with unrelenting pain, you can use this to explain the type of Pain you experience every day, all day, because there is no cure and the treatments offered may work today, they may even work for awhile, but at the end of the day, you are STILL in pain and it is not guaranteed to keep working, and although some treatment worked for someone else, it may not ever work for you.

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