My husband has had back problems and surgery for the last 20 years. He also has large fiber neuropathy that he pretty much doesn't treat. They have him on gabapentin 300 mg 3 times a day but he only takes it twice.....sometimes....lol...he is one of those that pretty much does what he wants no matter what I suggest

Anyway.......I was always supportive and sympathetic about his pain but really, really did not understand what he was going through until this SFN kicked my butt. It has changed my whole outlook on how I view people now. Which is a good thing.

Stay strong everyone

Debi

Yes, it has certainly also been my experience that people do not acknowledge pain that they cannot physical observe in us through the use of a wheelchair, walker, etc. When I am having an extremely bad day painwise, I tend to break into bad sweats and get very red in face (normally my skin is really fair). It has only been after observing that over time that my family really began to see how excruciating my pain truly is. It really hurts to have your family think that you are a "drug seeker" or a "lazy individual," especially after how hard we have all worked to keep it together in light of the pain we are in everyday. What I hear nowadays that brings me some comfort is, "I don't know what to say. I don't know what I would do in your situation, and I can't imagine being in it." By saying that, it as though it is being acknowledged that loved ones don't understand the position we're in and do not judge us for how we handle it since they now know that they don't have the background to tell us how we should be handling it. Unfortunately, it took getting a harsh diagnosis and several years of pain before I received this kind of empathy from others.

People know better then to say anything like that to me. That shows ignorance. They would get an ear full from me and nobody wants that.

My friend said one thing, which was mentioned on that site but I agree with her. The whole "It could be worse" comment. I agree because I don't have ALL the symptoms of my condition (RSD). It's rare to only have pain and nothing more. I'm extremely thankful for that!


Heather

I too give an ear full if someone poo poos my pain. Today I informed a so called friend that her saying "Oh well we all have aches and pains" Well perhaps if I wore my hardware on the outside it would be appear to the observer that yes, this might be a reason to have some pain. I didn't want a pity party, just a simple yes, I know it must hurt at times. I don't think people learn to accept and have empathy toward another unless they do walk in anothers' shoes. I think that is why this site works so well. No matter what our conditions are, we stick in each others corner the best we can. I wish all of us less pain. ginnie

I'm also grateful that my RSD isn't worse. I think about that every time I come here and read the stories of people who are dealing with more severe symptoms, spreading, etc.

I would have a problem with someone else telling me that I have to be grateful for that though. Fine with me if friends and family aren't trying to think up comments to make on my health/pain issues. I don't want to be the focus of all of my interactions. If they do feel the need to make a comment though, either because they are happy to see me up and about or because they can see I'm having a tough day, I wish they would give a moment's thought to making it a comment that helps, not hurts.

If my house were to burn down, but my family and dog all escaped/weren't home, I would be grateful. I would appreciate a comment from a friend that said, "Thank God your family is safe, but still it must be awful to lose all of your belongings. I'm sorry for your losses. I can't imagine not having the outfits I took my babies home from the hospital in, their photo albums. Some items can't be replaced. How are you doing with that ?" I would not find it helpful if someone said, "Well, no one was hurt. Your family is fine, so you didn't really suffer a loss."

My Aunt has been dealing with chronic pain for years, bad fibromyalgia. I get on and off muscle pains for no reason and tried many different solutions without much success, but overall healthy.

Hi all

I am new here so please excuse any errors

I have been caring for my wife who has trigeminal neuralgia for last six years and hope I have avoided any such crass and stupid observations as those listed in what not to say

most times i try to just sit and be with her and avoid talking to her as pain can increase if she talks back - but sometime I wonder if there might be something I could say that might helpful

any ideas?