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How Do You Explain Fibromylagia To Others

How Do You Explain Fibromylagia To Others

A MyFibroTeam Member said:

I suffer from a disease that you cannot see; a disease there is no cure for & keeps the medical community baffled at how to treat & battle this demon, who's attacks are relentless. My pain works silently, stealing my joy & replacing it with tears. On the outside we look alike you & I; you won't see my scars as you would a person who, say, had suffered a car accident or a person undergoing chemo for cancer; however, my pain is just as real & just as debilitating. And in many ways my pain may be more destructive because people can't see it & do not understand.

Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laugh, but inside I want to die.

Please understand the difference between "happy" & "healthy". When you've got the flu you feel miserable with it, but I've been sick for years I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me & I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy.

Am I lazy, stupid, etc? Nope. My physical brain & body is very different than yours. I experience life different than you do. I feel different than you do. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning & pain in my legs or arms & shoulders. The pain can be so intense that I cannot put my clothes on & I am left in my tears as I miss out on yet another activity I used to love & once participated in with enthusiasm.

Just as no 2 individuals experience fibromyalgia the same way, fibro fog also has a varying range of indications: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, & Language lapses. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I'll never know what mood I will wake up with?

The inability to get sufficient delta wave sleep impairs the ability to recall information & operate at a normal level of mental efficiency. Sleep, when I do get some, is restless, I wake often because of pain or because I twitch uncontrollably. I walk through many of days in a daze with the Fibro-fog laughing at me as I stumble & grasp for clarity.

Just because I can do a thing 1 day, that doesn't mean I will be able to do the same the next day or next week. There are those who say "but you did that yesterday!" "What is your problem today?" The hurt I experience at those words scar me so deeply that I have let my family & friends down again; & still they don't understand.

posted about 5 years ago
A MyFibroTeam Member said:

Tristan , I do hope you have better days, It makes me feel bad to read your plea for support ,understanding, and help. Please know that we care very much, and we know what it means to feel so much pain, physically and emotionally. My prayers are for you. Gentle hugs.

posted about 5 years ago
A MyFibroTeam Member said:

Take a normal healthy person, no sleep for 3 days. And see how they would function. That a little taste of Fibromyalgia.

posted about 5 years ago
A MyFibroTeam Member said:

I describe it as I seemed to get a horrible flu a few years ago that never went away, but more painful. To be honest, not very many people are interested. I must be surrounded by self centred people. The only ones that care are my husband and my parents. My children are young adults and have a lot going on with there own lives. I try not to burden them with my troubles.

posted about 5 years ago
A MyFibroTeam Member said:

so very true.i have constant pain all the time, but no one knows i don't complain, but i would love to, i get so sick of the pain i just wish people could understand the way i feel, but how can they when there are no visible signs.however, life goes on and so far still on my feet.whoever reads this thank you for understanding.

posted about 5 years ago
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