Expert: Suzan Jackson - 8/4/2011

Question
I am a 22 year old female, and for the past few months I've had some disturbing symptoms... I am extremely extremely tired, regardless of how many hours or how little hours of sleep I get. I could sleep 4 hours or 16 hours and when I wake up it is the hardest thing to get out of bed. I have many headaches, I sweat uncontrollably (especially on my face now), I feel dizzy, I am very weak, I suffer from very bad depression spells, my bowel movements have been weird lately (diarrhea, soft stool, and feeling like i need to use the bathroom and when I go there is nothing) I crave starchy foods and sugar a lot.
I am generally a very healthy person, I have very bad acid reflux though... and I've always sweat more than your average person, but now it's extremely bad, I've always suffered from depression but I thought it was hormonal, and I've always slept for many hours...
But it's gotten worse now... i have no energy, none, and it makes me feel bad and very worried... My mother is anemic, i was wondering if these could be symptoms of CFS or anemia?

Answer
Dear Melissa -

Sorry for the delay in getting back to you.  With my kids at home during the day in the summertime, I have trouble keeping up with my computer-related work!

Chronic Fatigue Syndrome (CFS) does cause extreme fatigue like you've described, but it also causes many other symptoms which you didn't mention, including recurring sore throat or swollen glands, flu-like achiness, and an intolerance to exercise.  That last symptom is a critical one in CFS:  you may be able to exercise but within hours of any kind of exertion, you suddenly feel as if you have the flu and the resulting flare-up or crash can last for days or even weeks.

Here is a self-quiz for CFS:

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

And more information about CFS (also known as CFIDS):

http://www.cfids.org/about-cfids/default.asp

You'll see in the diagnosis section a long list of other conditions that cause fatigue which need to be ruled out before you can be diagnosed with CFS (including anemia).  You can use this list as a guideline with your doctor to help investigate your fatigue.

The gastrointestinal symptoms you describe are also a very common part of CFS.  It often causes a condition called Irritable Bowel Syndrome (IBS) which is pretty much exactly what you've described here.  There are some treatments that can help IBS in some people, though nothing that treats is completely.

The dizziness may also be a part of CFS.

Almost all people with CFS develop a condition known as Orthostatic Intolerance (OI).  CFS causes dysfunction in the nervous system which results in lower than normal blood volume and low blood pressure when upright and/or high pulse rate when upright (these two conditions are called Neurally Mediated Hypotension (NMH) and Postural Othostatic Tachycardia Syndrome (POTS) which together are referred to as OI.  This can make you feel very sick, dizzy, or light-headed if you've been upright (even just sitting up). The tricky thing is that OI can not be detected through a regular blood pressure test.  Your bloood pressure may appear normal when tested a single time in the doctor's office.  The only way to formally diagnose OI is to conduct a series of tests of blood pressure and pulse rate.  You start by lying still for 10 minutes, then the doctor or nurse takes your blood pressure and pulse rate.  Next, you stand up and stand VERY still, not even wiggling your toes or fingers.  Every minute, the doctor or nurse takes your blood pressure and pulse again.  With OI, after about 10-15 minutes, your blood pressure will plummet and/or your pulse rate will go way up.  If your OI is severe, this may happen even sooner.  Alternatively, you may see a cardiologist for a tilt table test.  OI is a key part of CFS, and treating OI can make almost all CFS symptoms improve.  It is also something that doubting doctors tend to feel more comfortable dealing with.  Here is an excellent article about diagnosing and treating OI, written by the doctor who first identified it as a part of CFS:

http://www.cfids.org/webinar/series2010-past.asp#13

(at this link are the article itself, slides from a presentation on OI, and a Youtube recording of the actual presentation).

So, overall, my advice to you is to:

1 - Read the information listed above and take the self-test to see if your symptoms match CFS.

2 - Go see your doctor immediately.  Tell him or her what you have told me here.  Since some doctors tend to dismiss fatigue (saying things like "Oh, everyone feels tired sometimes"), emphasize all the other symptoms you have mentioned here.  Explain that something changed dramatically for you (however many months ago).  Tell the doctor how your life has been affected.  Your doctor should immediately order a whole bunch of blood tests - including looking for anemia, thyroid problems, and other common causes of fatigue.  You can use that list I mentioned above as a checklist.

3 - After the initial bloodwork (and assuming no obvious problem was found), talk to your doctor about CFS.  Ask to be tested for OI (I think the article linked to above includes instructions on how to do this).

4 - If your doctor is not familiar with CFS (many aren't), share the information I provided above.  You can also direct your doctor to the CDC's page on CFS (this helps to reassure him or her that CFS is a very real illness, recognized by the CDC):

http://www.cdc.gov/cfs/

Just FYI, the latest research on CFS indicates that it is almost certainly caused or triggered by some sort of infectious agent, though that agent (or agents) have not yet been identified.  If you or your doctor are interested in the latest research on CFS, here is a great website:

http://www.research1st.com/

I hope this information helps you to find some answers and get some relief.  No matter what the source of your new symptoms, you are not alone and there is help available.  Best of luck to you -

Sue Jackson

www.livewithcfs.blogspot.com