Yep!

and I can add a lot more symptoms to that list.Most doctors don't have a clue.I have been to many and quit going to them years ago.

I don't have it that bad, but I am not the man I used to be. I could unload a 48-foot tractor trailer full of product by hand and not really give out. I could go 19 hours/day and not really need any extra rest. I could keep up with the Mexicans. Now, I'm about half of that, and I don't like it. Now, for the first time in my life I have actually had to be dependent on other people for some help.

Doctors can be so ignorant. It may not be a death sentence but it certainly is a Life sentence.

Endzone, you could keep up with the Mexicans? What is wrong with you?

Max - Hum - might want to send what you wrote here to your Doc!! Might be an eye opener. And yea for you for being assertive right off the bat with her.

That's a really great response. I get mad and ask the doctor if he or she has fibromyalgia. Then I proceed to ask them how they know how bad it is. This usually ends with the doctor being offended. I like your response better. :).

Amen to all of this. Many times we just need to tell the truth about it all. I'm sick and tired of being "sick and tired." And I'm worn out telling people that I'm doing good when they ask me "How are you?" I ask them, "do you really want to know the truth?" Most of the time they don't want to hear it. They don't understand, and if they do understand, there's not much they can do to help.

So let's keep venting and keep hanging in there. Let's tell the truth about it all. There's a saying, "You never know what a day may bring."....so let's keep hoping as we suffer through each and every day. May God have mercy on us and bring healing to all of us one day soon, through whatever means that may be! :)

Well said! And.... um helondo doctors forget that CFS affects our immune systems!? We catch everythjng...and it takes 3 times longer to recover...from anything ..like a cold.

I am guilty of having said this. Please, let me explain.

I didn't know I had cfs for 2 years. I thought I never recovered properly from pneumonia. I was still working full time, which went very badly. I was worried I'd lose my job. I pretended to be healthy. It was a desk job, but with cfs, very hard.

I got in the habit of sitting or standing straighter whenever I saw or heard anyone coming. I put expression back on my face when I looked at people. I went to the bathroom to put my head in my hands when I couldn't sit up any longer. I checked and rechecked my own work to catch any mistakes.

Then I worried that if my son's father knew I wasn't well, he might try to take custody again. So I was only open about it to my boyfriend, my parents, and 1 friend. I even hid it to some extent from my own kids. It involved a lot of hiding in my room.

I am no longer working, but still don't want my son's father to know. I have decided not to share that I have cfs with his father or the school. Everyone else is fine to tell.

But I have a tendency to downplay my illness. The worse my symptoms, the more likely I am to hide and downplay them. I think it's a weird part of brain fog. Like when I'm feeling especially bad in front of other people, I don't think about it, just downplay and hide symptoms. Like I can't remember it's ok not to.

So last Christmas.... My boyfriend's cousin's husband had a major problem last year. I can't remember exactly...it was something major that had to be removed, or something like that. It was life threatening. He lived through it, but was so bad off he didn't want well wishers. He is fine now, but he had a long recovery. So cfs is bad, but that is so much worse. Then he asks, "how are you doing?"

He meant it. No one ever really wants to know how I'm doing. But I just couldn't make it seem like what I'm going through is worse than what he went through.

I don't remember what else I said, but I did say that as far as chronic illness goes, this isn't that bad.

Then my daughter says try living with her.

Then he says that it's different when you have to live with someone going through it, because the sick person is just sitting there.

It felt bad. Compared to what he went through, not that bad....in the short term. So I sank inside.

It's hard.....where is the line between letting someone know it's hard and being that annoying person who complains a lot?

And I'm sorry everyone. I let you down. I let me down. I said that it isn't that bad. The truth is, it is really bad. But for a moment sitting on a couch at Christmas when someone actually wanted to know how I was doing....it didn't seem that bad.

I think we have to maintain a balance. I broke down at work yesterday in a team meeting, because my doc told me my liver could have gone into shock and killed me in a matter of hours .. I was recounting this and the seriousness of it hit me, it was too much, I had to leave the meeting to collect myself.

But I also tell my team that my illness is my issue not the company's, I don't make excuses for non-performance and I dont expect them to either.

So CFS is not so bad for me because I am still somewhat functional and there are so many things out there that would take that away. For some CFS is as bad as cancer or AIDS.

I count my blessings every day, I give thanks for how well I am able to live with this illness, I dont walk around depressing other people because I'm feeling crappy .. but I won't allow anyone belittle what I am going through.

This is life-changing. It is life-threatening. It is the hardest thing I have had to deal with in my life and I would not wish it on my worst enemy. Recognizing the seriousness of what I am going through is part of my journey and is key to my ability to cope. I will not let anyone take that away from me.

It's all relative Max; just because others have it worse doesn't diminish how life altering and horrible it is for you! You are correct and it's important to remember.

What happened with your liver? Are you still in danger of your liver going? Is there anything you can do?

Still waiting for the doc to tell me... she's taking her time, which does not help the stress... isn't stress bad for your liver?

Oh my gosh that is soooooooo true. When I was first being diagnosed with it both of the doctors I saw would just look at me like "Are you for real?!" when I said I couldn't walk for 30 minutes without being more sore and tired than I already was for 3 or 4 days after.

I think my mom, a registered nurse, is the only medical professional who has done me the courtesy of not assuming she knows how I feel.

Fire that doctor right now.