Expert: Suzan Jackson - 4/30/2008

Question
Hi there,

For about 12 months now I have suffered from constant tiredness and recently (in the last 3 months or so) I have been experiencing extremely bad migraines to the point where I have vomited, also between these migraines I have constant dull headaches.

I am always tired - I am still able to go to work, walk my dog etc but the thought of doing these tasks makes me cry.

I have also started feeling extremely faint and dizzy whenever I do anything strenuous and keep having a sensation that I can only described as "crawling skin" or like my skin is too tight for my body.

My doctor is very dismissive of me because I have suffered from depression since I was 8 years old (I am now 23) but my depression has been controlled for at least 4 years now and I don't feel like that effects my life at all. My doctor mentioned CFS very briefly last time I saw him but then went on again to say that my depression is probably causing the tiredness dispite the fact I said this tiredness is very different to the "I want to give up" tiredness I experience when depressed - when depressed sleep comes as a relief but at the moment it is the tiredness that is making me depressed becuase I want to be able to do things with my fiance and family but simply can't because I am so tired.

It has now got to the point where I am struggling to wake myself up in the morning.

I don't know whether any of this is ringing bells but I would appreciate some advice on whether this could be CFS and if so how do I get my doctor to listen to me?

Thanks

Michelle

Answer
Dear Michelle -

I'm sorry you're going through such a rough time.

Based on what you've described, it is possible that you have CFS.  The CFIDS Association of America has a self-survey that can help you to figure out if you have CFS:

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

Here's their basic information on CFS:

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

And, here's the Center for Disease Control's official criteria for CFS:

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

This page has lots of information for both patients and doctors:

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

Since this is the CDC's official information on CFS, I would suggest you share some of this with your doctor to help him to better understand (if you think you do have CFS).

My other advice on dealing with your doctor (who, by the way, is making a huge mistake by not listening to you and by assuming any new symptoms are depression) is to focus on the headaches and dizziness, at least in the short term.  These symptoms are the most alarming to me - and should have set off alarms for your doctor.  The intensity of your headaches, in particular, needs to be thoroughly investigated with a CAT scan or MRI or whatever other tests your doctor feels are necessary.  Although headaches are often a part of CFS, headaches of such an intensity may also have other causes.

The dizziness may also be a part of CFS, but it may be something concrete that your doctor feels more comfortable dealing with.

Almost all people with CFS develop a condition known as Orthostatic Hypotension or Orthostatic Intolerance (OI).  CFS causes dysfunction in the nervous system which results in lower than normal blood volume and low blood pressure when upright.  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 many 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.pediatricnetwork.org/medical/OI/johnshopkins.htm

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 back to your doctor about the headaches and dizziness.  For the  short term, don't focus on the tiredness, since he's not listening.  Describe the headaches and dizziness and demand that these two symptoms be fully investigated.  He may refer you to a cardiologist.  When you talk to your doctor about the possibility of OI, refer to it as Orthostatic Hypotension (a mainstream condition that he'll understand).  Ask for either a tilt table test or an in-office OI test, as I described above (it's also described in the article listed above).

3 - Find a new doctor!  You don't want to stick with a doctor long-term who dismisses such serious symptoms.  If, after reading the information, you think you might have CFS, I would be glad to suggest some CFS specialists for you.  Let me know what region you live in, and I can tell you what CFS doctors are nearby. If you don't want to say that on the internet, please feel free to e-mail me privately.  Just go to my blog:  www.livewithcfs.blogspot.com, click on "view my complete profile" in the left-hand column and you'll see where you can e-mail me.

Good luck, Michelle, and please let me know how things go for you.

Sue Jackson

www.livewithcfs.blogspot.com