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Chronic Fatigue Message Board


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I'm sorry you have to go through all of this. It amazes me that a doctor could actually believe that 70% of people who are supposedly depressed don't know that they are. 70%??? Sounds to me like wrong diagnoses and doctors unwilling to take the time to actually evaluate a patient for something else, so they label them as "depressed." I'm sure there are some people out there who are depressed and don't really know that that's why they feel the way they do, but at least they can acknowledge their symptoms and it would probably make sense to them once it were explained by a Psychiatrist. I doubt that number is 70%, though, in my humble opinion. If that doc is supposedly willing to diagnose CFS, why wouldn't he take a look at your labs and at least consider the possibility with you?

I am only starting down this path of possible CFS myself, so I can't offer any real advice of what to do about it, only sympathy for doctor's giving you the blank stare, assuming your problem is all in your head and are quick to dismiss you.

Up until 5 months ago, I was perfectly healthy and very active. Then, I got a cold that hung on for 6-7 weeks, but when the cold symptoms finally went away, I still have not felt well since. My debilitating and very bizarre symptoms are post-exertional malaise, unrefreshed sleep, and orthostatic intolerance. (I have other symptoms of CFS as well, but they aren't debilitating.) I feel like I'm constantly dealing with a delayed reaction energy deficit. My body no longer tells me immediately when I'm expending too much energy, I feel it THE NEXT DAY and it is an over-exaggerated response to the minimal energy expended the previous day and lasts for day/weeks. So, I can't just "take it easy and not do too much" because my body no longer tells me when I'm doing too much, and "too much" these days is taking a bath or other little things that are normally no big deal. I feel like I'm continually paying for energy I expended days/weeks ago with none left over for today. In addition to that, I feel like there is a hole in the bottom of my energy tank, so even going to bed early and getting a good night's sleep doesn't reset my energy level anymore; I always have an energy "deficit." Then there's the orthostatic intolerance where I can't stand up long enough to peel an orange over the garbage can anymore (or take a shower, stand in line at the pharmacy, etc.) without feeling like I'm going to pass out and fade into oblivion. It doesn't happen when I first stand up, only when I've been standing in one place for 2-3 minutes. My symptoms are so bizarre that every doctor looks at me like I'm absolutely off my rocker and then secretly looks around for the Candid Camera because I must be joking! ARGH! I know what I feel and what's normal and not normal for my body.

In reviewing the diagnosis criteria for CFS, I exceed them with the only exception being that I have only been dealing with this for 5 months (so far), not the minimum of 6, but I'm still on a downward spiral. Up until last week, I didn't know anything about CFS nor did I know the technical names of my bizarre symptoms that are all listed and defined under CFS. I have been tested for everything under the sun and everything has come back normal. I have been to my OB, and Internist with a specialty in cardiology, 3 endocrinologists, a pulmonologist, and referred back to my OB. On paper, I look fantastic, but in reality I feel 70-85% dead every single day. Everyone in my world is trying to pass this off as "normal" pregnancy stuff because I happen to be 6 months pregnant with my 3rd baby, but my OB says no way, this is NOT normal and she's never heard of any pregnant women who've been through what I have in the past 5 months. I know my body, even my pregnant body, and I understand that every pregnancy is different, but this is NOT normal. I concede that my symptoms may be worse because my body is expending energy to grow another human being, but do not agree that this is all a pregnancy thing that will just disappear in 3 more months (that might as well be an eternity, I'm barely able to take care of myself, let alone my 2-year-old anymore!).

Every doc looks at my pregnant belly and immediately assumes I'm just looking for an excuse to be lazy. No, I HATE being lazy and I want my life back! I had 10 "excuses" to be lazy before I even walked into anyone else's office, I want to FEEL better! I don't know that I'll ever get a real diagnosis, but the Internist referred me back to my OB and said he can't help me anymore. After finding the technical names of my bizarre symptoms, I decided to schedule another appointment with him anyway and see if maybe there is something else (including CFS, since it explains EVERY SINGLE BIZARRE THING that has happened over the last 5 months to a T) that perhaps he didn't think about because I wasn't doing a good job of explaining my symptoms, and I was only complaining about the debilitating ones, not every little thing that isn't actually bothering me but fits with CFS. He's out of the office until Tuesday, so I have an appointment then. I feel like the stalker patient now, but I need to feel better! I'd much rather spend my time elsewhere besides doctors' offices, but I want my life back!

I hope you can find a doc who can help you. I'm probably in the same boat you are but only at the beginning of the road, so I don't know where to tell you to go to find a good doc who can help you. You are in my prayers and I hope you are able to get some relief soon! I haven't looked yet, but are there books about managing CFS that might help? When I have something "new" come up that I don't know much about, I search the Internet and head to the bookstore. I haven't done that yet because, although CFS seems to fit my situation and the post-exertional malaise symptom seems to be a defining symptom of CFS, there may still be things that haven't been ruled out yet in my case (I won't buy the depression diagnosis either - I'm not depressed, I WANT my life back!), so I'm going to give the Internist one more shot to come up with something else to explain my symptoms now that I know what they're called and can talk more intelligently.





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