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How do you explain to others that you are in pain every day?
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crystallou01 posted:
I hate to be the one to ask this, but I have to. Does anyone else feel like they can't really tell anyone else the amount of pain they're in? I try to tell my husband, my children, my mother in law, and my whole family, but I always end up feeling like I'm just whining. I know I'm not whining. I know that I am not simply complaining. I just think that sometimes it's so hard to get it through to my family. I have a 6 year old, an 11 year old, and a 13 year old. How can I explain why I flinch every time they touch me? Or how can I explain to them that I've already done too much for one day? or that I did too much yesterday and am paying the ultimate price of severe pain today? I don't really know how to educate others about my health condition...See, my husband is extremely understanding and he understands that sometimes I just can't keep going on as if nothing is wrong----but---I don't know....I want my family to understand...and it's not for lack of trying on their part....I just don't feel like they get it...Has anyone else had this problem? Or has anyone else breached this subject? Surely you have, please help me. How can I break it down for them? I don't want to scare them...but I don't want them thinking I just like to sit around either.
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foreversore responded:
Is it possible for you to print out info on FM that is easy to understand for your family to read? Another great resource is butyoudontlooksick.com and look up the spoon theory its a good way to explain to people who don't know what its like to live in your body. Good luck and I hope you find these things helpful.
 
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crystallou01 replied to foreversore's response:
I just wanted to tell you thank you for responding to my post. I left around pamphlets for my husband to read and I believe he read them. However, maybe it's not that he doesn't understand. I just feel so bad about not being able to do as much as I used to do. Actually, honestly I am having a hard time accepting my own limitations. Hope you are well.
 
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foreversore replied to crystallou01's response:
My husband read the pamphlets too but the spoon theory is what really helped it to sink in. I am posting a link to it here for you. Hope it helps

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
 
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booch007 responded:
Good morning,

I see you got the link for "you don't look sick" it is helpful.
I would say I have bee stings...or feel like the flu....legs won't move.

I think that it is so personal a thing to get someone to understand this, heck I don't understand this at times. I get a burning pain out of no where and have to "work on it"...it is just crazy.

I just want to say what happened in my life;

No one helped me around the home and my teenage sons made fun of me when I would 'complain' of a 'spasm' or problem.....and it hurt me emotionally as well as probably making my actual pain higher. Validation is a great med. I can remember crying in the shower where no one would see* me...

Even being a nurse and an educator I couldn't teach my own family what was happeneing to me. I brought my DH with me to the neurologist's first trigger point injection session.

W O W ...that did it. He saw all the sites as she injected me and me cringing with the first sessions when the muscles were so festered. (Sessions are so much better now)..BUT he SAW.

He HEARD from the doctor NOT ME what was happening and I also found a person who heard me and understood. It was a very liberating time. I still had passage through the hour glass with multiple tough sessions before the body has trained to twitch and release now.

My DH said, OMG honey I am so proud of you. He then became MY CHAMPION. He talked with my son's and the whole attitude in the house changed. They would tell me, Mom don't do that....then you are going to hurt...

But I would say...doing this when my body says OK is physical therapy and I have to do things....the whole atmosphere in the house changed. My pain levels were better, as I too understood more of what was happening to me. I changed alot of things in the house to accomodate the issues.

But they still forget: the human forgets pain and has a hard time judging it when IT is not in pain. So I forgive and remind them if it is a bad day....just gentle speaking.

So, where does this help you? I would drag him to the doctors and have them do a full exam and discuss the "spots" and the disease. TELL the doc you need this....they know how hard this is. Then, develop a toolbox for yourself that works. Things that make you feel better and USE IT. If getting out and away for a bit is good medicine do it often...start working for you and not worrying about them and what they think.

My in-laws understand because my husband understands. But the rest of the family have no idea. I don't really care much. I do all I can do when I can do it.

Apple picking? I am there (with a folding chair).....Dinner anywhere I am there....You need to learn your pace and your path and try and get the DH to get it via something other then you telling him. USE your doctor.....I wish you all the best.

That book Fibromyalgia and Chronic Myofascial Pain by Dr Devin Starlanyl is so great for you but the book (it's sister) is called the Advocate*, it is great for outsiders to understand and it is printed to "copy" and bring with you. Look into it? I got mine on Amazon.com.

Hugs again, NancyB


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