JUST A THOUGHT! !!!! | MyFibroTeam

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JUST A THOUGHT! !!!!
A MyFibroTeam Member asked a question 💭

Ya know I got to thinking, ,,one of my dangerous past times
I was thinking about the many of different people on our site here all from different walks of life
And there are many many many different ages on here
But what really bothers me when I read a post of a young 19, 21, 14...this fibromyalgia disease knows no age. Just like cancer, or any other diseases that knows no age. ..and all that can be done for any of us is pray for relief from the pain
And pray for a better day...
Or reach… read more

posted June 18, 2016
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A MyFibroTeam Member

Trying to explain any pain to someone who hasn't ever experienced that type of pain is next to impossible. Trying to convey how painful childbirth is to someone who has never had a child or how scary it is for an asthmatic trying to breath through an asthma attack would be simular. How do you explain a pain in your leg so intense that you just want to cut off your leg to stop the pain. So difficult to explain expecially when a few days later the pain is somewhere else. Only people who have gone through intense pain before would even have a chance of comprehending and even then unless they had to live with it the rest of thier lives they would not get it. It's not always how bad the pain is so much that it always is. What a blessing it would be to know a painfree day, to sleep without having to roll over every hour or so, to be able to ride in a car without wanting to scream in pain after only an hour or two. I've pretty much given up on trying to explain it to most people. They really don't want to know so they don't believe. If they believe it's real for me then it could happen to them and who wants to believe that?

posted June 18, 2016
A MyFibroTeam Member

You have said a mouthful !! I often wonder if people just smile in your face then not really believe you and what you are going through. I can only imagine a young person trying to explain how bad they feel or how bad their pain is and all someone sees it that they are young and they have to be faking it....it is so sad and I pray they find an outlet like this one to get some validation for themselves..

posted June 18, 2016
A MyFibroTeam Member

I do not recommend edibles. I tried them and the quality control is impossible, and each time I thought I was going to pass out, they were bad experiences.

posted September 15, 2016
A MyFibroTeam Member

Warning, long and rambling!
Hi Theresa, I've also been thinking about this lately. Because it is such an invisible illness, it can be really difficult for those who have never experienced the pain, fatigue, and associated symptoms to truly have an empathetic view. I've been working on my communication with my husband lately, and educating him on certain aspects of this ailment. He is a wonderful, loving man, but has always been fairly healthy, and I'd occasionally hear the "you should get up and do something, you'll feel better." But we're working on that!
Also, working in the healthcare field, I am in a unique position to see both sides of the coin, so to speak. In nursing school, we were taught to trust your patient. Pain is such an individual experience, so subjective to each and every person, that if we become skeptics, we are no longer caring for our patients as we should. That has always stuck with me.
Another thing, as someone who has only recently received the official diagnosis, but has known that something was different for a while, I'm one of those who began my fibromyalgia journey at a young age. This set me up for many minor hurdles on the road to "normal" adulthood. And I didn't even realize it at the time.
I now have developed a close support system for myself. A few close friends, one of which has fibro herself, another who is amazingly understanding and supportive, my wonderful husband, and my parents. (My mother was diagnosed with fibro when I was in grade school.) Also, my co-workers have been wonderfully understanding about me needing limited hours at work, and that many days, I need tasks that are mostly done while seated.
In summary, I do believe it is difficult for young ones when diagnosed with any chronic condition at a young age, the expectations can be difficult, if not impossible to live up to. A key is finding people who want to understand. Even if they have never been through it first hand, if they are willing to lend support, a smile, or a shoulder to cry on, cherish them!

posted June 18, 2016
A MyFibroTeam Member

I think some things have improved in the treatment of the disease but I still read stories of younger people getting skeptical looks or being treated with anti depressants in the belief is out there that it's all in their minds ! Since there's no definitive tests to prove otherwise, we're always going to be doubted by someone.
Brenda

posted July 13, 2016

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