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PostPosted: Sat Mar 01, 2014 2:47 pm 
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Because I do. I have a couple friends who don't ask questions when I'm in pain or even just feel too drained and unmotivated to make plans or participate in something. They do not live with chronic pain issues but one in particular is like this which is great, I never feel like my comfort is at the mercy of her ability to take my word for it, somehow I've been able to make these ones understand, at least as much as anyone can without dealing with the same thing. But sometimes with others, even people I'm extremely close to are so concerned if I miss out on something, even when these are plans with other people, and I can't think of anything I haven't already said that communicates that I'm O.K. with staying in after working all week and cherishing a time that I just don't have to do anything, free of obligations.

It used to be much worse when I was strung out, and needed the "energy from painkillers" and didn't even have much relief from them (since full agonists are usually not very effective for fibromyalgia pain, many report better relief from suboxone or tramadol) and I wasn't very active, both part of the problem and result. But now I work and can keep plans with people when I've made them and I guess I didn't expect that on top of that there'd still be times when I'd have to explain myself for not doing more.


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PostPosted: Fri Aug 08, 2014 8:26 pm 
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I feel ya. I have chronic pain and bad anxiety, and I'm quite young (mid 20s). I used to hike, party, blah blah blah. Not now. I'm a stay at home mom. I use my child as an excuse A LOT. I can't hike like i used to, my arthritis has been debilitating. I didn't even realize I was in so much pain until I quit opiates. I had been hiding my mental and physical problems with the drugs. I finally got the care I needed. But now I'm fucked for life on getting opiates because I admitted I have a problem to all my doctors and got on suboxone.

Ranting..... anyway...

I have a good group of friends. They understand when I don't/can't come out to do things. I still get the occasional "OH come onnn... don't be crabby, come out, have fun, you'll FEEL BETTER!". No... getting up and trying to keep up with a bunch of 20-somethings will wear me out. I used to have all that energy on oxys, but not now. Suboxone helps a lot though.. closest I've felt to normal in a long time. Even if normal means being a hermit crab!


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PostPosted: Fri Aug 08, 2014 10:33 pm 
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I have some of the same issues, but because of being somewhat introverted rather than from chronic pain. However, I do get migraines and other kinds of headaches a lot.

It definitely has a lot to do with energy! What sucks it out of you versus what helps to restore your energy. For me, being around people and outside my home drains me big time! I'm a friendly person and a decent conversationalist, but I need to be alone/home to recharge my jets.

I totally understand why being out while being in chronic pain would be very taxing! I struggle like you with being able to explain it to others, although I think people should definitely be understanding when it comes to struggling with chronic pain. If I were in your shoes I would ask someone who doesn't understand to remember the last time they had mouth pain (toothache, etc.). Then ask them to imagine that pain as never ceasing, waking up to it every day. I think that when people actively imagine themselves in your situation they should be able to muster up some empathy.

Amy

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PostPosted: Mon Aug 25, 2014 11:42 am 
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Wow I posted this a while back, thanks for the feedback!
This has always been an issue for me. Like i said I have a couple of friends who have always understood, no questions asked (unless of course, they were just trying to understand better which is productive). But my SO tries to get me to be a joiner and sometimes it just feels like it's not enough.
Even worse, was when I was around my siblings more when I still lived at home with my mom, and for them it was always just laziness. And yes, I totally hear you on that "oh come on you'll feel better!" I'd get that a lot. Sometimes getting up and moving can make you feel better, but what makes them an authority on how to wind me up?
Idk. At my last appt my doc said he thinks I could have been misdiagnosed and says it's possible I have Lyme disease. My SO wasn't surprised because his mom has it and said it would explain a lot about the energy. But trademarks of Lyme and fibro are very similar so who knows.


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