View Full Version : Am confused about CFS diagnosis


Asylum
03-31-11, 10:22 PM
Apparently i've been diagnosed with CFS because there are no other explanations for my tiredness. I read up on CFS years ago when my mother was diagnosed so i know its a whole bunch of symptoms, not just tiredness, and can be debilitating to the point where people are bedridden. But i'm just tired. I also got some test results back which show everything is fine (yay!) including thyroid - its just my vit D is down a little. I'm not sure what to think. I have depression and anxiety, and add. I'm overwieght now though the tiredness was the same when i was underwieght - not that thats any excuse not to lose weight. I stop breathing in my sleep (and have been doing that since my 20's) but don't have obstructive sleep apnea. So i'm a bit confused as to what to do, besides getting some more sunshine.
Maybe i should just get some more sleep, exersize more and get more sun - would that help?
I'm just talking here because i don't have anyone else to talk to and was a bit shocked at the CFS label. I almost feel like its been handed to me on a plate - as far as i knew, people who were really ill had to fight to get diagnosed and therefore treatment / help.
Anyway, cheers.

Cro-mag
06-04-11, 12:07 AM
CFS and fibro are not well understood. I read a book a few months ago about them that said they seem to be basically the same condition. CFS is more fatigue than muscle pain and fibromyalgia has more muscle pain and stiffness, etc. but still some fatigue. These seem to be related to inattentive type ADHD. I experience fatigue and muscle pains and a lot of muscle stiffness. No diagnosis because I can't be bothered exlaining this to my doctor.

As I understand it a lack of growth hormone and cortisol seems to be a factor. This could be secondary to neurochemical imbalance, IDK. The amino acids ornithine and arginine may help with growth hormone production but the key factor seems to be a good sleeping pattern(which I find impossible). A healthy diet with lots of green veg is always a good idea. Avoid foods that people are most commonly allergic to. Wheat, dairy, etc. Those two were definately a factor for me but no the whole story.

Hypoglyceamia can be a factor. Avoid sugary foods and take a chromium supplement. Chromium works wonders for me but I ran out a few months back and I am starting to feel more fatigue and have dizzy spells again. ALCAR is great for energy during exercise. Also high protein helps. Although I am allergic to milk I can drink whey OK. Goats cheese is OK for me too and cheese is a good source of protein. It will be trial and error to find what you can tollerate. If you are lucky food allergies are not an issue. You can also get vitamin d supps just to be sure but dairy produce is high in vitamin d...

sarahsweets
06-04-11, 09:06 AM
F you don't like the cfs label then get a second opinion. Is this doc treating you for everything? Depression can make you tired too. Sometimes docs just want to label you without thorough testing.

Trooper Keith
06-10-11, 01:10 AM
CFS is only diagnosed when there are no physically identifiable causes. That is, in order to diagnosis CFS or Fibromyalgia, everything "real" has to be ruled out. They are psychosomatic diseases.

zannie
06-10-11, 01:24 AM
Exercise is a good idea for depression and anxiety as is sleep and sun - vit D.

You just have to take the exercise at your own pace and ease into it. If not you may not be able to sustain it. If you have fibromyalgia symptoms also water is the best place to exercise or a slow yoga like yin yoga is helpful.

Fortune
06-10-11, 01:48 AM
Edit: Wow, the OP is two months old. Oops.


Maybe i should just get some more sleep, exersize more and get more sun - would that help?

One of the signs of ME/CFS is something called "post-exertional malaise," which is that after exercise you get rebound pain and fatigue. This is actually used as one test to diagnose it - some people who have this seem fine when they're given an aerobic test, but the next day on the same test might perform like someone decades older.

I don't think it's required for a diagnosis of ME/CFS, but it is certainly a telling sign.

Which is to say, if you want to exercise, this could happen and you'll have to carefully pace yourself if it turns out to be the case. Might be worthwhile talking to your doctor about options if this is in fact the case for you.

CFS is only diagnosed when there are no physically identifiable causes. That is, in order to diagnosis CFS or Fibromyalgia, everything "real" has to be ruled out. They are psychosomatic diseases.

I linked this paper (http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0704A&L=CO-CURE&P=R6222&I=-3) in your "Is fibromyalgia psychosomatic?" thread, which was pretty informative.

There's evidence that fibromyalgia is neurological in origin, as the nerves are more sensitive to painful stimuli. There's also evidence that it is hereditary - if parents have it, then it seems much more likely that a child may develop it as well (the number I saw was 8x, but I am not sure that this was replicated in a larger study).

I thought this bit was interesting with regards to possibly psychosomatic causes:

With respect to stressors, there's actually weak data that psychologic stress and distress directly causes fibromyalgia. One of the fascinating things is I'm always surprised, being a scientist, at how often my clinical judgment ends up being wrong. When I was first doing research in fibromyalgia, I, like many of you, was always smacked in the face by the psychologic comorbidity that a lot of fibromyalgia patients come in and express. But the data suggest that many types of psychologic stress don't seem to trigger or worsen fibromyalgia. We were doing a study in Washington, D.C., where we were beginning to work with a company that was doing clinical trials in fibromyalgia, and they wanted to do more innovative outcome measures of fibromyalgia patients. So we were having fibromyalgia patients in Washington, D.C., wearing Palm pilots that beeped 5 times a day and they had to record their pain, their fatigue, their stress levels 5 times daily. As is not unusual in research, some of the best things that happen to you are serendipitous; and the 9/11 attacks on the Pentagon happened right smack in the middle of the study. So we had about 20 people who had been recording their pain, their fatigue, and their other symptoms, before and after the Pentagon attack, miles away from where all of these patients were living.

We expected that we would see pain, fatigue, and stress levels go sky high in people with fibromyalgia after 9/11, but there was absolutely no change. Karen Raphael was doing a population-based epidemiologic study in New Jersey where she had collected baseline data in people right across the river from the World Trade Center in New Jersey, and similarly found no increase in symptoms.9 So you have to be very careful about attributing emotional stress to the development of fibromyalgia. It likely is very important what type of stress, and interpersonal stress may be much more likely to exacerbate or trigger fibromyalgia than the type of stress seen after 9/11.I have less information on chronic fatigue syndrome, but according to this page (http://www.umm.edu/patiented/articles/what_causes_chronic_fatigue_syndrome_000007_3.htm) :


CFS has been linked with genes involved in the hypothalamic-pituitary-adrenal axis and the sympathetic nervous system. These genes control response to trauma, injury, and other stressful events. Nevertheless, researchers have been unable to determine how the genetic variations influence symptoms.

A number of studies have found alterations in genes involved with immune function, communication between cells, and transfer of energy to cells.

Researchers have identified many different genes in patients with CFS related to blood disease, immune system function, and infection. However, no clear pattern has been found. Mostly, though, it seems that there is no single etiology known for certain. It may be true that they are psychosomatic or at least sometimes psychosomatic, but it doesn't seem there is any agreement as to a primary cause.

I am not, by the way, interpreting psychosomatic as "fake," just to be clear. After all, stomach ulcers were long interpreted to be psychosomatic and they're kind of serious. I think they're still seen as at least partially psychosomatic and not just a product of helicobacter pylori. I just happen to be reading about this stuff and have information at hand.

Fortune
06-10-11, 05:33 AM
Adding this link as it apparently has several citations, although I am not sure of all of the science behind it:

http://www.hfme.org/whatisme.htm

Lunacie
06-10-11, 04:33 PM
CFS and fibro are not well understood. I read a book a few months ago about them that said they seem to be basically the same condition. CFS is more fatigue than muscle pain and fibromyalgia has more muscle pain and stiffness, etc. but still some fatigue. These seem to be related to inattentive type ADHD. I experience fatigue and muscle pains and a lot of muscle stiffness. No diagnosis because I can't be bothered exlaining this to my doctor.

As I understand it a lack of growth hormone and cortisol seems to be a factor. This could be secondary to neurochemical imbalance, IDK. The amino acids ornithine and arginine may help with growth hormone production but the key factor seems to be a good sleeping pattern(which I find impossible). A healthy diet with lots of green veg is always a good idea. Avoid foods that people are most commonly allergic to. Wheat, dairy, etc. Those two were definately a factor for me but no the whole story.

Hypoglyceamia can be a factor. Avoid sugary foods and take a chromium supplement. Chromium works wonders for me but I ran out a few months back and I am starting to feel more fatigue and have dizzy spells again. ALCAR is great for energy during exercise. Also high protein helps. Although I am allergic to milk I can drink whey OK. Goats cheese is OK for me too and cheese is a good source of protein. It will be trial and error to find what you can tollerate. If you are lucky food allergies are not an issue. You can also get vitamin d supps just to be sure but dairy produce is high in vitamin d...

Very interesting. I hadn't heard about low levels of growth hormone possibly being related to Fibromyalgia. I've been thinking that the reason my fibro went into remission was less stress - but I still have a lot of stress, it's just different stress than before my divorce. But about 6 years ago I took a course of several injections of HGH to try to loose some weight, and it's interesting that it may have something to do with a decrease in my fibro symptoms.


CFS is only diagnosed when there are no physically identifiable causes. That is, in order to diagnosis CFS or Fibromyalgia, everything "real" has to be ruled out. They are psychosomatic diseases.

It's true that we don't know what causes CFS or FM at this time. With any disease or disorder where the cause can't be identified with a simple test - many other things are ruled out first before getting a diagnosis. But - not finding an identifiable cause does NOT automatically mean that a problem is spychosomatic.


I can remember when migraine headaches were considered psychomatic, when women's cramps and PMS were considered psychomatic. All it means is that researchers have not discovered the reason yet, not that there isn't one. At one time ADHD was considered by most doctors to be an excuse rather than a "real" medical condition caused by smaller than normal areas of brain growth, by delayed brain maturation, by abnormal levels of chemicals in the brain - and by genetics.

Research simply hasn't been able to find the causes, much less the cures, for every single thing that can go wrong with human bodies and brains all at the same time. It takes time to work through the vast number of illnesses and disorders and do the research to figure them out.


Saying that anything that hasn't had a cause clearly identified yet is a result of a problem with the way we think is quite disingenuous.