Sorry I didn't reply to this yesterday when I first saw it, but I was too brain fogged to read it through. (Brain fog is how a lot of us refer to those times when your brain just won't work properly.)

I'm also sorry to hear that you are being given that sort of run around by doctors who should know better. I had a doctor who sent me to a psychologist because he believed my symptoms were because I was suffering from depression. After seeing the psychologist for several months, she concluded that the depression was being caused by the CFS, not the other way around. She said if my depression was bad enough to cause the physical symptoms I was describing, it would have to be so bad that I'd be completely unable to function in society.

Like you, my life was good before I got this and people who think that anyone would want to give that up to bludge on welfare payments (which, let's face it, are nothing spectacular) are either stupid or completely ignorant. One of the worst parts of this is not being able to do all the things you used to - or even a few of them.

Sorry to hear that your family aren't keeping in contact either. I think that often happens because they either feel helpless that they aren't able to do anything or they simply don't know how to keep supporting you when it drags on for so long. Nor does it help if you are no longer able to catch up with them because of your fatigue.

I hope that things do improve for you. A lot of people seem to find that it's finding the right doctor which does the trick. Sounds like you are in the US, so I can't help you there, since I'm in Australia. There are sites which list doctors who are educated in CFS but I'm sorry I don't actually know them.

Hang in there and know that you aren't alone, despite the isolation this disease causes.

thanks cmiat. You would think to live in Los Angeles one would have specialists all over the place. I can find plenty of juice bars, float tanks and yoga clinics but CFS is treated like the plague out here (it seems). I'm currently pre-qualifying for a CFS study at Stanford University and considering traveling a couple of hours to a CFS specialist down south but oh how I wish I could find a local primary care doctor who would at least have an adult conversation about it.

You described so well the situations and frustrations that so many of us have experienced. This is the place to vent these emotions. I wish there were more solutions to these problems with the medical professionals. My first gut reaction is, "find another doctor". There are understanding doctors or nurse practitioners out there, but they are few and far between. I wish my brain was working better today, so I could respond with more supportive and encouraging words. CFS steals our energy with major impacts on our quality of life and every blood draw result, exam, medical test shows everything as "normal". However, be assured it is not just in our heads. We want more than anything to be able to work, be physically active, and do all those things we used to be able to do. Vent again because I think it is helpful to get those thoughts out and shared with people who have "been there, done that" and are still trying to have a fulfilling life even with a body that is not working properly. i support you and totally relate to everything you have shared.

I LOVE your screen name, 2DanceAgain... talk about summing it up well. It actually caught me off guard and I started crying just resonating with that longing in my own heart... Now I'm probably gonna have to share that unexpected cloudburst with my therapist tomorrow haha.

Thanks for the reply, just being heard and known is a huge encouragement :-)

I've very sorry to hear what you're going through, jeldredge. I have trouble with doctors that have more to learn no matter what the symptoms or diagnosis - maybe what's most to the point is that patients may not be the only ones who can't believe everything they read. With some of my diagnoses, even doctor's trusted sources for guidance have gotten some very important things horribly wrong.

My doctors often seem to be in a state of disbelief that I'm even capable of spotting errors in trusted sources, but I live with the diseases and know them intimately, like doctors may never know them unless they were patients themselves. By rights, patients should probably be the first ones to know when trusted sources make mistakes.

It often seems to somehow elude the doctors that if they're busy seeing patients all day and I'm bound to a chair with nothing to do but research my diagnosis, that at the end of a month let alone a year or two, that it's only likely that a patient may end up knowing more about a particular diagnosis than they do, and might have some valuable input to offer them. You'd think it would be obvious that we have specialists because general practitioners cannot be reasonably expected to be specialists in everything, but by the time they've gotten bad information from trusted sources, they don't even seem to be sure which specialist to refer me to. That's how I started studying my diagnoses, is just trying to figure out which sort of specialist I might want to go see.

I've even had my wife, even when she was the kindest to me, accuse me of sitting on my lazy rear all day doing whatever I please, like it was some kind of party to be sitting here debilitated and socially isolated. All I could think was how lucky she was to be able to work, to be able to interact with people, to be able to help people, to be able to earn enough to not have to worry whether there's enough to cover expenses. She still doesn't understand and probably never will, just how much it can be a challenge even to do the things I enjoy, even when I'm in a good mood.

For the record, about eight years ago I went out and walked off 50 pounds after doctors trying to make me panic over cardiovascular issues, I even pushed myself up some of the steepest hills I could find, but it never got easier and I never felt healthier, and even had other health problems flare up because of the effort. I could take 5 or 10 mile hikes on flat trails or routes, I even took one 10 mile walk, and came home feeling like I could turn right around and take another, and almost did...

But even when I was that healthy and active, the minute I would come home and sit down or lay down to watch TV for a half-hour, I got stuck. I felt so tired and fatigued I could barely get up for hours, and sometimes several days - not for being sore, or worn out from the effort, but just for being fatigued in a way that had nothing to do with activity level.

Everyone seems to think they're qualified to make a hypothesis, you know - I've been told my challenges were all because I was "fat, lazy, out of shape, deconditioned", you name it - even when I went out and put the lie to all of it, nobody's updated their hypotheses in recognition of this, I'm still going to hear that exercise and activity are the answer to everything, even when if they were, I'd still be at it enthusiastically.

I often read that what we as patients might do is share information with caregivers, educate them, raise awareness. Still sounds worthwhile, but sometimes I've printed out key passages from medical journals for them only to have the print-outs handed back to me as if they were worthless.

I really don't know what to tell you except try not to let anything dampen your spirits, don't listen when people talk insensitive garbage about you, and remember that there are many people, even people with unrelated diagnoses, that understand just what you're going through. Don't let people tell you're invalid, the biggest disability I can think of is when caregivers refuse to grow in knowledge about the diseases they aspire to treat.

So very sorry this has been such a reality for so long. I appreciate you sharing your story, it does help to not feel so alone in this. It is exactly why I sought out a group who understood! I also appreciate the advice to find a way to tune out the negative, condemning and even hurtful people. They may not even be aware of how their judgments add to the problem. I just posted an article that came out of Stanford today that they are getting great results from a blood test device that so far is 100% accurate in identifying CFS at the cellular level. How wonderful if we all could be legitimized in a single blood test! Continue prayers for healing and endurance :-)

You aren't the only one that goes through this. I am sorry for what you are going through. I don't have CFS but we do believe that my daughter does, and watching her decline in health and quality of life the last 9 months has been heartbreaking. What you are going through is not in your head and you deserve compassion, kindness, and a hug.
We have been through the same thing with my 16 year old daughter. Doctors brushing her off telling us its only her anxiety....one of the most infuriating was an oncologist (we were sent there by rheumatology because she always has a temp) that after 5 minutes said "you don't have cancer you have depression" - she's never had depression.
When we have had to take her to the ER for tremor control via Ativan they act like we are drug seekers .
A neurologist told her to lose weight or she will go blind. Another neurologists' nurse had the gall to tell me that I needed to be a "good supportive mother" and force her to take Topamax even though she wasn't tolerating it well. I have told plenty of them that they all need to be ashamed of themselves.
I don't know how they sleep at night treating people the way that they do.

*HUGS TO EVERYONE HERE*
What we are going through is real.
We are not scammers.
We are in pain, we have no energy, and the fog... just GAH!!!
Last October I started losing my ability to speak, at times. Literally. I was sitting in front of my fridge, because I couldn’t move to let it close until my wife nudged me away. Words were unavailable except with a SIGNIFICANT effort... and THEN to actually pronounce it was an exercise of extreme will and concentration.
A month before I had altered my eating habits. I’ve cut out carbs almost completely - I cheat occasionally, but really not very often. I’ve lost 50 pounds, and have dodged the diabetes bullet for the time being. More weight loss would be epic... but exercise is not about to happen, of course.
I am so heart broken at your experiences, jeldridge. I wish things would be otherwise for us all.
We are here. All of us for each other.
-Nykodemos