I so understand where u are coming from. I still have problems with my family understanding how I feel.

Nope, for the most part, people don't get it. Sorry to hear you're having difficulty with this trainer.Sometimes, it's easier to just not bother trying to explain. They don't get it, and we end up even more frustrated! You know we all here do understand. Hope you're feeling better.
Hugs,
Lis

I heard that! I tried to explain my FM to a guy giving me physical therapy for an injury and he told me FM is "an excuse people make up to get pain medication".

Such ignorance is everywhere in the world. I have had to decide it's not worth stressing out about, or I'd never have a moment's peace!

I hope you feel better soon.
Hugs,
Leo

Thanks, I'm really not feeling too badly. Yesterday I made a stop at the bulk warehouse type store, which involved lifting heavy items into and out of the shopping cart and then into the car and then into the house... I knew it would knock me down and it did. I sorta just ... accept it. But that doesn't stop it from causing physical difficulty and all!

Yes, I didn't bother to try to explain. I'll just go at my own pace, and not feel I have to answer to them.

I just tell people that I don't expect them to understand and they just need to be patient with me as I try my best.

OK first - I don't understand the resistance to the word "syndrome." Some people believe because it's called a "syndrome" that it isn't real. I guess they've never heard of Down Syndrome, or Turner Syndrome, or Parkinson Syndrome, or Fetal Alcohol Syndrome, or OK there are hundreds, and this is the only one people seem to have a problem with. So I don't get it - why single this one out and worry about the word "syndrome"?

As for the rest, I wouldn't work with a trainer who doesn't get FM. I have one who does, and it's made all the difference in the world. She knows my limitations and respects them, but she also knows my needs, and how far to "push" without pushing me past my limitations. She designed a workout for me a year ago and I go and do it now without her, as I'm familiar with everything now and only check in with her if I need something - have a question or concern.

For those who don't "get it" - it's futile to even try - don't waste your precious energy. They are not going to get it because, for the most part, they don't want to get it.

There's an old saying: "Never try to teach a pig to sing. It wastes your time and annoys the pig." It's kind of like that. Maybe thinking about that will allow you to smile and walk away instead of stressing over it.

We are totally there with ya Peace. These so-called 'invisible illnesses' are the pits. If our body glowed bright red where the pain was for everyone to see, it would be so apparent that we are suffering greatly. Instead we suffer in silence.

The one thing I have noted is that, if a person truly is concerned, truly cares about you, even if they can't empathize they can at least SYMPATHIZE and mean it !
My husband does not FEEL my pain. But, he sees me cry, we talk every day openly about everything he knows I mourn my former self before this Fibro took over.

I don't really even talk about fibromyalgia to people unless I know they understand. My family understands because my aunt also has the illness. There are too many people who are ignorant or just plain mean about it. People say something stupid, then i get upset and make them cry. It's too much drama. :)

I know what you mean! some people just dont seem to understand..my boyfriend is great but he has problems with it to..he is always telling me "i shouldnt be so tired" or when i tell him i cant do something cause i'm hurting his response is 'your always hurting!'

I worked with a trainer three times and all three times ended up in so much pain I was bedridden for at least a day.

She was the gym's expert on F... She mainly just showed me around the gym and helped me to familiarize myself on the equipment. What she had me do was lightweight by her standards but some was too difficult for me.

To her credit, she did take notes and she really listened to me when I said something was enough. After the last session, she admitted how much she realized she didn't know about F and thanked me for educating her. (you know how I am...)

But, I won't work with her again - unless she pays me, dammit.

I don't expect anyone to understand what I go through. I just want them to be cool and not accusatory.

Yeah I get frustrated with people cause they don't understand I know they try but it still frustrates me. my fiance is both encouraging and frustrating. I know he doesn't want me losing all my independence and I know him asking me to do laundry isn't a huge thing but when it's like doing laundry is going to be the only thing I can do that day before I get exhausted since many times breathing takes most of my energy.

Hard for Anyone to Understand...even those of us who deal with it everyday.

I Think some of the Issue may lay in the Name...it Implies just Muscle Pain, well...ALOT Of Folks have Muscle Pain..

This should have More of a Neurological Name, Because (& This is Only what "I" believe to be True), I Believe Our Muscles Ache, Feel Heavily Fatigued Easily is because of the Constant Stimulation by our nerves...Kinda like a low Vibration.

When ya have the Flu, your Whole body aches..cause the Nerves get heated up, Pissing them Off, and they react by basically shutting us Down, Forcing us to rest...this is the same type Ache..at least for me it is.
I believe something is Pissing Off our Nerves..and the Nerves in turn take it out on our Muscles..

So I Believe it should have a more Neuro name, less of a Rhuemy Name.

Then people might Understand the Whole Picture...Ohhh...NERVE Pain...Yea...that is some BAD Shit ! It Encapsulates Why the Muscles Ache..Why we get Sudden Pain in the Weirdest of Places...Yea, I HAVE had my Nipple Light ON Fire.

idk.

I understand completely. One interesting thing about friends and family not understanding is that when anything happens to them, they think the " end of the world" is coming. You would think that they are about to die if they experience any type of health problems and yet they can't sympathize or even try to understand the pain, fatigue, and overwhelming muscle weakness that we live with each day. I have friends who I have known all my life, and they knew that I was very active prior to becoming sick, yet they still believe that "I'm depressed" and they have no concept of the suffering and isolation that we face each day. I just think that it is so interesting to hear them complain and complain, yet never thinking that we live with that each and every day. Stay strong and don't let it get to you. I have seen very few trainers who understood fibro. They seem to think that you can function as a " normal " person and they don't take the time to study and educate themselves about it. If you have access to an indoor pool, the water will help you as much and be much more gentle on your muscles and joints. It really helped me with my pain control, but unfortunately, I cannot find an affordable place to join where we currently reside.

Just had this experience with my dentist. When I showed up at their office crying, after getting part of a tooth pulled and before getting the rest of my tooth pulled, she was shocked. She must have done some reading up on FM because today when I went in she was much more understanding. And no most people just don't get it.
I suppose there are a lot of things we don't get either though. It's not easy to empathize with someone/something you know nothing about. My brother and sister-in-law lost a 4 month old baby about 25 years ago (crib death). I could never even try to understand what they went through. I can only sympathize and not empathize.
Because of that experience I try to be patient.

Years ago the doctors used to throw any symptoms they couldn't match to an illness into the Fibro category. They called it Fibrositis back then. My doc told me they didn't know what it was, itis meant "inflammation", they didn't know the cause, so it was just the word they gave to things they didn't have a clue about.

I think that's where a lot of people have gotten the idea that it's not a real illness, just a grand melting pot or something. (we do all seem to have some different symptoms and problems with it)

I wonder if there are actually several different problems getting lumped into this F lable. Just causes more confusion for everyone else and ourselves.

Where can we go to promote public awareness of this disease? Judy