What do you think the most hurtful part of fibro is to you? (Besides the pain of course)

neeters,
Sounds like you've got a lot going on. I know it's hard, especially on the bad days, but be gentle with yourself. This is not your fault! I often wish my family could feel my pain for a week or so, but that's not going to happen. How do you feel about your doctor? That can make a huge difference. I always have a smile on my face when I leave an appointment, because my doctor BELIEVES me, is sympathetic, but the bottom line is, "we don't really understand this, do the best you can and try to stay active and I will help you."

I'd have to agree that not having anyone process that even though you look ok and move ok that you are actually in pain.  I work nights so I'm doing everything myself at work and making breakfast for a hotel of moderate size can be a lot on my joints and fatigue.  I can't imagine what it would be like for a huge hotel.  I'm sure there would be more than just me making it.  When I get relieved in the morning and get ready to go home the main person who relieves me says that because he's 30+ years older and dug wells for 20 years and screwed up his back that I don't know what pain is.  So I always just tell him that what I am going through at 24 is different than willingly taking a job that killed my back for 20 years.  I have this now unrealisitc idea or picture of what you are supposed to feel and act like in your 20's.  You have no cares and can do whatever and wear heels (no matter the height) whenever.  I've had to think about what I do and wear since I was about 15 when I was dancing to a new cd with the parents gone and then the next day being in so much pain I couldn't go out with my friends.  Now I have major pain in my hands, wrists and feet.  When I talked to my physical therapist for and injury I received a while back (it flared up bbbbaaaddd) she said that I should get it checked out because she had the dame kind of pain in her feet and it turned out to be RA.  And that I can't afford to get checked out for a few months because I've been having to screw up my rest on my weekends to go to the doctor and now dentist for over 2 months now.  So yeah the most painful part about fibro is processing the pain alone and knowing that only you can take care of it because only you feel it.  That felt good getting off my chest.

I read an oline medical news journal all the time. Sometimes there is a question posted by a doctor and responses from the medical community. In January there was a post by a (presumably) young woman MD asking how to treat fibro patients. For at least a couple of months there were responses from doctors mostly poo-pooing fibro, mostly from men. There were many who did not believe it was a real condition, that it came up only when there was a lawsuit, it was only nutty drug-seeking women, that patients should be either given no treatment at all, especially not pain meds, or they should be sent to chiropractors to get rid of them, and on and on.

I was so terribly hurt by the hateful misinformed writers. I had read the post hoping to find new positive ideas, but this post had an unusually high number of responses and they were mostly vituperative. I realize most of my doctors don't have anything to say about my fibro diagnosis, but now I am wondering if they all are putting me in the wacky-woman-with-nothing-wrong-with-her category.

I'm not sure if it is from fibro or a lingering effect of post-concussive syndrome, but for me the worst part is having mental difficulties, being unable to express myself the way I want to.

I had to go get neuropsychological testing done a year or so ago and felt rather validated to hear them tell me that I was not crazy, I do actually have a lot of trouble expressing myself intellectually. I'm good enough at conversation but when it comes to things I have to study and remember, I'm terrible. It's like I have a mental block - the information is there in my head but I can't get it ou. I understand it but I can't explain it to someone else.

Because I'm still functioning at an average level, it's extremely frustrating that everybody thinks I'm just fine but I KNOW I could do so much better. I used to be told all the time how smart I was, and I don't hear that anymore because I have such a hard time. If this is from PCS, the fibro fog really doesn't help by making it hard for me to remember just about everything. I've never had a good memory but since I developed fibro it's gotten incredibly bad.

I just wish I could THINK like a normal person, even if my body continued to rebel against me. That alone would be worth so much to me.

-Sandi