Ten Discoveries About The Biology of Chronic Fatigue Syndrome

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Chronic Fatigue Syndrome Is Real

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What Should You Do If You Think You Have CFS or FM?

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WHAT SHOULD YOU DO IF YOU THINK YOU HAVE CHRONIC FATIGUE SYNDROME? — by Catherine Morgan

I recently was asked this question, and this was my response.

CFS is very hard to diagnose, it is usually considered a “diagnosis of exclusion”. If you do have CFS or FM, you will have been suffering with many symptoms, and fatigue is just one of them. I would suggest you write down all of your symptoms, how severe they have been, and how long you have had them. You may or may not have CFS, but any good doctor will run certain test, and attempt to treat you based on your symptoms and conditions.

Many times the symptoms appear to be depression, and your doctor may want to start by trying you on a treatments for depression. This was the case for me, in-fact as a nurse myself, I called my doctor and told her I thought I must be depressed, because I just couldn’t get out of bed. After several months of trying different anti-depressants (and this is normal, because you can be depressed and one anti-depressant works while another does not, it is a matter of trial and error), but when no medication worked and my symptoms became worse it was clear more tests needed to be done. For me it became over a year of tests, treatments, and my symptoms getting worse….before I ended up in the hospital, and finally getting a diagnosis. That was ten years ago, and I think (hope) getting a proper diagnosis can be a little easier now that there is more awareness by the CDC.

I would approach your doctor with all the “evidence” of your condition, this would be the list you make with your symptoms, and how long you have had them. Do not try to tell the doctor you have CFS, let the doctor examine you, run test, and try treatments based on your medical condition and symptoms. If you don’t get better, or get worse, the diagnostic tests your doctor will run will increase in order to rule-out other conditions such as MS, Lupus, Lyme….there are so, so, so, many things you could have other than CFS. No good doctor should just say, “oh, you have CFS”…..you really do need to make sure you don’t have any of these other conditions, that you would need to begin treatment for as soon as possible.

If you do end up being diagnosed with CFS or FM, a good doctor will tell you that currently there is NO cure, but they will be able to treat many of your symptoms, and you may be able to feel quite a bit better. (DON’T LET ANYONE TELL YOU THEY HAVE A “MIRACLE CURE” THAT THE MEDICAL DOCTORS WON’T TREAT YOU WITH)…I DO believe in “alternative” modalities of treatment (ie: acupuncture, meditation, herbs, energy healing, etc….just to name a few)…but these treatments should be used in conjunction with conventional medical treatments and with your physicians awareness. Many people are making a lot of money “claiming” to have cures for CFS, (believe me, I have spent my share of money on these types of things as well). Just try to keep in mind all the commercials you see on TV for “miracle diet pills”…..the only “miracle” is the profits these companies are making off of people that want to believe they can lose weight just by taking a pill. As long as there is no “real cure” for something, there will always be someone willing to sell you a “fake cure”. Get “real” medical treatment, and if your doctor thinks alternative treatments would be helpful, then do it…don’t do it on your own….you may get worse.

I would suggest you use your current doctor, unless you don’t have one or you don’t like the one you have. If you need to find a doctor, just concentrate on finding a good doctor at this point, you don’t need to find a doctor specializing in CFS….you just need to find a good doctor.

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Your clinician should consider a diagnosis of CFS if these two criteria are met:

1. Unexplained, persistent fatigue that’s not due to ongoing exertion, isn’t substantially relieved by rest, is of new onset (not lifelong) and results in a significant rEducation in previous levels of activity.
2. Four or more of the following symptoms are present for six months or more:
   • Impaired memory or concentration
   • Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
   • Unrefreshing sleep
   • Muscle pain
   • Multijoint pain without swelling or redness
   • Headaches of a new type or severity
   • Sore throat that’s frequent or recurring
   • Tender cervical or axillary lymph nodes

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ALSO SEE: Information you can give to your family, friends, and physician….from the CDC.

FREQUENTLY ASKED QUESTIONS

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Some Additional Information:

1. As patients, we are consumers, and as consumers we have the right to expect a certain standard of care…..However, as patients, we all know that we are not always treated with the respect and dignity that we deserve. There is a site called RateMDs.com, and I recommend that EVERYONE (whether you are sick or not) go to this site and rate both your good and your bad doctors. It is very easy to do, and it is the only way that doctors will begin to realize that they can’t just treat us as numbers and dollars, we are human beings, and they work for us….And if they do a bad job, we are going to tell. It is also a good place to check and see if a doctor you are considering going to has a good rating or not. I can not recommend this activity enough, the internet is a great tool for consumers, and a great way for patients to take their power back. So, go to RateMDs.com and give you good doctors the credit they deserve…..and “tattle” on all those bad doctors who have mistreated and been disrespectful to you. Go ahead, you won’t believe how empowering it feels….and then go tell all your friends to do the same thing…..let’s start a movement right now! We’re not going to take it anymore! Be a good doctor, or get patients no more! Hey, that is a pretty good motto for the movement…..and it was just off-the-cuff. O.k…..So that’s the, make sure you rate your doctor rant, I digress.

2. If you are diagnosed with CFS or FM, but your doctor still tries to tell you it is all in your head…..GET A NEW DOCTOR. Also, check out my post on DEPRESSION AND CHRONIC ILLNESS — WHAT CAME FIRST?

3. Also see the VIDEOS EXPLAINING CFS AND FM.

4. Consider getting you B12 level checked, you can have additional symptoms due to a Vitamin B12 deficiency while having CFS. See: WERE IN THE WORLD DID MY MEMORY GO? Vitamin B12 deficiency is more common than most people know, even doctors. If you are having symptoms of confusion, dementia, or memory loss; you should be tested and treated for this problem. Here is some more information that you might find helpful: When your body doesn’t absorb vitamin B12

5. TIPS FOR LIVING WITH CHRONIC FATIGUE SYNDROME

6. From a post at CFS Squared — THE CHEERFUL ONCOLOGIST – Gives Tips On How To Get You Doctor To Listen To You.

7.   Chronic Fatigue Syndrome should be diagnosed early.
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