Nobody seems to understand unless they are going through the same thing. Found a great support group on facebook that has helped when I need to talk to somebody.

I had a pretty bad day physically. I guess getting out of my routine over the holidays messed me up more than a little bit. I was so tired today that I went back to bed and slept literally all day until it was time to go get my son from day care. People just don't get how you can do that, but every once in a while I get so exhausted that I have to do it. I don't feel great this evening but it's better than this morning. At least it was on a day off and I didn't have to call out sick.

I am on Lyrica for fibromyalgia, which I think is actually helping me gain weight because I don't really feel when I'm full. It's great for pain but the problem is it dulls everything, and not just where you are having fibro issues. I'm thinking about going off of it; must talk to my rheumatologist on the 12th to see if she agrees.

Also having an issue with joint swelling right now. Can't take Humira because I had a round of antibiotics, and you have to lay off the Humira for 2 weeks after the course of antibiotics ... basically, a full month without Humira. The inside of my left knee is about twice what the right knee is and it hurts when you put the slightest bit of pressure on it. It stinks but I am dealing with it because the alternatives suck.

My hubby is pretty understanding but every once in a while he gets this passive-aggressive thing going about housework. He knows it's a problem but he won't touch it because I am not touching it and this can go on for weeks sometimes. I finally got my mom to start helping; I have to pay her to do it but it's worth every penny because sometimes I just can't do it.

My son is 4 and he only gets it if he jumps on me and I say something. Then he's all "sorry, sorry Mommy" and you can tell he didn't mean to do it. He just forgets that Mommy has the ouchies.

Outside my inner circle, I just don't even talk about pain anymore because people don't get it and they really won't get it until they're old. It's fine with me. Not my problem, it's their problem. I've had to get rid of friends who just don't get it. I have one friend now who I had to stop going grocery shopping with, as she can run all over the store and I get lost behind her. She thinks she's helping but she really isn't. I don't want to hurt her feelings so I just don't go with her anymore. I used to work out with her sometimes but it always felt like a competition. So now it's me on my own and I deal with it.

need to add something.. because of my fibro and asthma condition "normal" exercise is out of the question.. i'm fed up of people telling me to get out to the gym.. urm.. i can barely move the sofa backwards and hoover nevermind go to the gym!

RILEYRED -
I believe housework and other daily activities count as long as you have set your BMR based on a sedentary lifestyle. Someone who already claims an active lifestyle on their BMR already includes those types of activities, IMO.

It is unrealistic to expect results like you see on the Biggest Loser with a FM sufferer. And others think we are lazy and whiners. Just one who doesn't understand to go do their full aggressive workout the next time they have the onset of flu symptoms with an aching body. They usually go home sick and lay in bed.

The important thing is that you pay attention to your body. Do your best to balance the daily expectations of living in society and exercising where you can. Paying attention to your calories and activity are very important to find that balance. We just need to accept the fact that we can eat a whole pizza and run 10 miles to cancel it out.

BE SMART AND STAY STRONG!

I find people can be very patronising, at the school gates a mum might see me with my stick and they sort of speak to me like i am a small child "oh are you hurting today? Oh you poor thing!" or they just cant grasp that you can be in constant pain. spending night after night with little or no sleep. If people ask me how I am I just say "so-so, I have good days and bad days" The one place I have found a real comfort is on Facebook, there is a page I joined called 'Chronic Pain Support Group' it has been a godsend! we are from all walks of life, all over the world and we have different reasons for being in pain. But we UNDERSTAND EACH OTHER! We can have a good rant and a moan and we are not judged and we don't get any patronising responses. We all know what it is like to be in constant pain and in some cases it is not always obvious what the cause is so people who don't suffer with chronic pain just don't get you, they are either patronising, treat you like a child or retard or they just get fed up! But in this group we get none of that. It's like "Oh I hear ya", "Sorry you've been suffering", "I've had a rough time too" "healing hugs" etc.. sometimes we moan about the side effects of our meds or we ask if others have the same side effect as you and how they cope. sometimes if we are prescribed a new drug or treatment, we ask if someone else has tried it and what do they think, or we might have tried something that has helped in some way and want to share it or suggest it, we share useful web pages and from time to time I have seen posts from drugs trials for certain treatments etc.. But the main thing is we NEVER judge one another and we we can have a rant and a moan and we understand even though we might be in pain for different reasons or whatever. I think I would have gone insane had it not been for that support group.
Love and hugs to you all
Charlotte
xxx

Im glad to have a few pople in my life that are understanding and there will always be ppl who are not and can be real jerks some of them Dr's. This is something i wouldnt wish on anyone. I keep hearing about some of the new meds coming out and a few ppl have asked me if i have tried them I have but they didnt work out for me. If they want me to feel better then don't treat me like im playing sick. Sorry had the nurse roll her eyes at me this week when i told her i had fibro. Not the 1st time still pisses me off. Im thankfull for this group and the fact we all hold our heads high even when it hurts LOL

People will not understand unless they suffer with pain, I don't think most spouses get it, your kids, family, hell, not even the doctors that are treating you understand how desperate we are for help with the pain. I have not heard of any cures, some meds.take the edge off, but don't make us pain free. I did meet a woman the other day who was diagnosed with fibromyalgia, and a couple other things, she was put on several meds., and she said she actually got worse after starting on the meds. She went to a Homeopathic doctor, he did some specific blood work, she had high levels of mold poisons, mercury poison from her fillings, etc. she was detoxed,and is still going thru all that, is eating "clean" and she swears she is pain free and almost to a point where she feels better than ever. Something to think about I guess. Good luck everyone. Red

I have people in my life who go to the doctor and get a diagnosis of FM without ruling out everything else. Then, after a few weeks they are "cured" and don't understand why I still have it. In my mind I don't have fibro, I feel good mentally when the weather is good. But, on the days leading up to bad weather, it is hard to get off the couch and the depression takes hold. My mother is the only one who understands and believes what I am going through. My husband of 27 years tried to unnderstand but finally decided it was all in my head. A few months later i divorced him. I would rather live a happy life alone than have someone who said he "was disappoiinted in" me.Of course that was not the only reason for the divorce, but is was the proverbial straw that broke the camel's back. I used to tell people about having FM but now I just say I'm having a bad day. Reading the posts from this group have made me feel not so much alone.