It’s like having your nervous system turned up to 11. All the time. With no end in sight and only minor times where it is lessened. You feel everything that is touching you (even your clothes and light breezes) all the time, which can range anywhere from fairly irritating to “why am I being rubbed with coarse sandpaper?” Every joint and muscle feel like you’re just completed a marathon when you’ve just been sitting still.
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People tend to see you as completely healthy, maybe even wonder why you don’t take better care of yourself. Some wonder why you don’t “just take something for it” as if a minor lessening of pain is worth the damage overusing the medicine can cause. Your body language (of being in pain) can be off-putting and isolating.
Medical professionals have a hard time believing it exists, and those that do believe can have a hard time figuring out what to do about it. This can make it especially difficult to get help from other agencies that work for people with disabilities.
For me, the thing that is the hardest is the lack of human touch. I flinch when touched by someone else, cause it hurts, so it makes others not want to give simple touches, like a hug or a caress, cause they don’t want to cause pain.
You have to make a decision for everything you wear or do about how much pain it’s worth. No one can make this determination for you, nor should you for anyone else.
Going to work, playing with kids, wearing something tight (or rougher than silk), having sex, having someone simply put their hand on your shoulder; all of these depend on how much pain you think you can take, balanced against doing nothing at all, which has its own level of pain.
To top it off; pain is subjective. What’s horrid for one person is manageable for another. Every description will ring true for others with Fibro, but we’ll each have our own story.
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