Hi there. Well, I haven't posted on this board for a long time, so in case anyone is wondering what is going on with me, I thought I'd give an update.
First of all, after a somewhat tortuous procedure, going from doctor to doctor and being told, essentially, that I was somehow making myself sick, I saw a cardiologist who actually figured out what was wrong with me. In addiction to a crappy immune system, I have neurocardiogenic syncope and probably (we're not sure) chronic orthostatic intolerance (yes, long words -- let's call them NCS and COI). The cardiologist was vasovagal herself, which is nice.
Wonderfully, this diagnosis covers all my symptoms! Yea! Happy me. So the good news is, I'm not crazy, have a concrete diagnosis, know what is going on in my body, and don't have to listen anymore to people telling me that my symptoms are psychosomatic or caused by my vegetarianism.
The bad news is, my parents completely don't get it, and my friends don't believe me. I recently got another bad flare-up of symptoms, with a few new ones (exciting! wheeeeeee!) and at the same time, my whole family is sick with a flu. Now, I had the flu before anyone else, in fact I think it was at least part of the trigger for this flare-up, but now I'm the only one who doesn't have it. Instead, I have my lovely NCS.
The result of this is that, even though I feel dreadful, I am pretty much alone all day and the only times that my parents have been interacting with me is to say things like, "SInce you're healthy, why don't you walk to the store and get us some groceries" or "since you're healthy, how about emptying the dishwasher/taking out the trash/you name it." Yes, lots of fun. Somehow I don't know how to explain the way I actually feel, so I just push myself to do those things. Except the walking. Too dizzy, might bump into something.
Anyway, since there is no board here for dysautonomia, and since it is actually related (or seems to be) to CFIDS, I may hang around here. I dunno. Lots to do right now ...
Oh ... dysfunction of the autonomic nervous system in the body. The autonomic system controls things like blood pressure, heart rate, body temperature, digestion, respiration, you get the picture. Anyway, in my body, that system doesn't work properly.
What exactly are the tests to determine this particular diagnosis? The reason I ask is that the symptoms you describe are also those related to CFIDS. I'm not disputing what you now feel you have, but I also think (and have experienced) doctors often assigning a particular diagnosis because they do not understand, nor know how to diagnose or treat, CFIDS. This is often the case with Hypothyroidsism and/or Thyroiditis; that is, someone with CFIDS being given this diagnosis. The difficulty is that many people with CFIDS also have Thyroid problems and also that many of the symptoms overlap.
There's the tilt-table test, and also various other tests evaluating heart rate, blood pressure, etc. My heart rate is all over the place.
My thyroid by the way is normal, in case that was in question? I think I've had tests done for just about everything. The many similarities between CFIDS and the various forms of dysautonomia does make one wonder, and I think we don't really know what the difference is or where the boundary is. Some doctors don't even believe that dysautonomia -- especially things like POTS which are basically invisible -- is real, same as with CFIDS. I talked to a number of doctors who didn't or who had completely mistaken ideas about the disorder before I found one who actually had personal experience with it and had worked with other patients who had it.
It raises an interesting question, namely: what exactly is the difference between CFIDS and dysautonomia, since they share so many of the same symptoms, both have an incredible range of symptoms and severity, are both difficult to diagnose, both tend to be invisible or nearly so, and many people are diagnosed with BOTH of them at once! So what's the difference? It's tough to say. Maybe they're the same thing. Maybe they simply overlap.
I may very well have CFIDS ... I don't know. It's a vague issue, isn't it? Although, I think my fatigue is probably not so severe. I am tired, but not to the point where I can't do things, and the focus of my symptoms is more on other things like lightheadedness, temperature dysregulation, palpitations, headaches, etc. There are a whole bunch of these invisible chronic illnesses that are like shadows, uncertain, mutable, confusing, and sometimes considered to be fragments of patients' imaginations simply because the doctors don't want to deal with something that they can't really explain.
Dysautonomia has an explanation, which is probably why more doctors believe in it and are willing to diagnose it. I've read a lot of accounts of kids, teens, and adults who have NCS and/or POTS and they match my experience very closely, more so than the accounts of ppl with CFIDS. However, who's to say they aern't both part of a spectrum of the same thing? I have no idea.
My experience has been the opposite - doctors around here seem too eager to assign a CFIDS diagnosis because it means they don't have to bother doing tests or treating anything. It makes me extremely cross.
I'm finally beginning to find out what's actually wrong with me after having to suffer being diagnosed with CFIDS and offered a load of unhelpful advice from a consultant who, in hindsight, didn't know anything... not even anything useful about CFIDS.
What I'm trying to say, in a very roundabout way, is that I'm glad you've found out what's actually wrong, Atthis and I wish you well for the future.
Yeah, I've heard about that, too -- doctors saying "CFIDS!" because it's a handy thing to just throw out there if they're confused. I've also wondered about the doctors who are specifically CFIDS doctors ... I mean, they keep patients by diagnosing them with CFIDS ... not to be cynical, but of course, there is plenty of corruption in this world, as well as plenty of good.
Oh -- so what is wrong with you? Lol, that sounds mean, what I meant to say is what do you have?
Yes, I agree with all the points you made in your post #5. It is extremely difficult to pinpoint a specific illness when it has similarities to so many other illnesses. The prevalent thought now is that CFIDS is a virus, similar to viruses that lead to MS, AIDS, etc. What we need is more funding to research and study this illness so that doctors are not wallowing around in the dark about it.
One thing I think that distinguishes CFIDS from other disorders is the symptom of post-exertional malaise - a worsening of symptoms following physical or mental exertion which occurs within 12-48 hours of the exertion and requires an extended recovery period. Although I have seen improvement in my "flares" (in terms of length and severity) over the past 13 years, I am still very limited in my ability to return to my previous level of exercising.