Chronic Fatigue Syndrome Community
How do I get a doctor to take me seriously?
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Chronic fatigue syndrome (CFS) is a disorder that causes extreme fatigue over extended periods of time which persists after rest and limits one’s ability to conduct ordinary daily activities. Discuss topics including causes, exams and tests for CFS, treatments and how to live with CFS.

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How do I get a doctor to take me seriously?

I have been dealing with what I think is chronic fatigue syndrome but every time I bring it up to a doctor, they tell me that its probably not as bad as it seems and that I should see a psychiatrist for depression.  This is very frustrating because I know that I do not have depression and the only reason I ever am in a bad mood is because of the way I feel physically.  I have been like this since I was 16 and it has just been getting worse the longer it has been and I am 24 now.  I know I am not crazy and it is not just in my head.  I have even taken several questionnaires online that all say it is classic severe chronic fatigue.  I need to know what I can do to get a doctor to take my concerns seriously.  I was told that I could see an endochrinologist but I dont even know what that it.  I just know that I am at my wits end with this and am not sure how much longer I can deal with this.  Does anyone have any advice.  I am in the process of getting my thyroids tested but if there is nothing on the bloodwork, what am I supposed to do?
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Avatar_f_tn
Ah, the age old question for CFS sufferers. How do we make doctors believe us? I think seeing an endocrinologist (a doctor who specializes in glands, most commonly the thyroid) is a good start... My thyroid levels were just slightly off, but that gave me enough reason to get some medication for that.

And if anything makes me mad, it's when doctors asume that "Oh, you're a young adult and are feeling bad? MUST BE DEPRESSION." It seems like they are trained to assume this right off, when that's not really what is going on. You could try bringing up fibromyalgia instead of CFS (they are pretty similar, with the main symptoms being pain and fatigue, but CFS is EXTREME fatigue, when Fibro is more based off the pain you feel) I find that doctors don't get freaked out by Fibro like they do when a patient says something about CFS.

Also, it's best to NOT mention the internet during an appointment. I know that trusted sites on the internet can give us the best information, but for some reason doctors hear the word "internet" and quickly assume "hypochondriac". I think it's because many people read something of wikipedia and then say "Oh my gosh i have that!" and tell their doctor they have some fake disease.

I don't go to the doctor as much as I should because for me, I don't feel like my mentioning of CFS is welcome in their office. For my endocrinologist, I'm there for my thyroid. For my pediatrician (I'm 17), I'm there for fibro (which I also have). The best thing to do is find a doctor who understands and believes that what you feel is real. I've known people who've tried going to alternative medicines (massage, acupuncture, naturopathic medicine) who have been very successful.

I hope at least one of these tips is useful to you! Best of luck!
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Avatar_m_tn
  CFS is something  lot of doctors don`t know a lot about. Fibro was that way not so long ago. Doctors would call it Fibro if you complained about many issues and they couldn`t come up with an answer. So they called it Fibro. Now that there have been many studies done on Fibro, they can now properly diagnose it.  The same goes for CFS. There haven`t been enough studies done on it so many doctors blow it off as something else. It was actually a psychiatrist that diagnosed me with it. Along with depression. I`ve had it my whole life as well. I`m 53 now and there are just now meds coming out to deal with it. The problem is that many doctors specialize in whatever they feel they know, and understand the most. In my opinion, most doctors specialize in whatever will make them the most money.  Anyway, just keep looking. Don`t tell them you have CFS until you are actually diagnosed with it. Just tell the doctor your symptoms. If you aren`t depressed, tell them you aren`t depressed. I have to force myself to do everything because I feel exhausted all the time. Lately I`ve found that my body has been lacking in nutrients it needs to build energy. I`ve also found that younger doctors seem to be more open to newer problems and treatments. A friend of mine who thought he had CFS had some tests done and found out he was very low on testosterone. Once he got testosterone replacements he started feeling a lot better. It is good to do your research on the internet. Just don`t try to diagnose yourself for the doctor. Better to be an informed patient. Try to find out what others with CFS have done "naturally" that has worked for them, and then try it. If it doesn`t work, then MAYBE you don`t have CFS and it is something else, like low testosterone or something.
I think you have done the right thing with asking questions. Nobody cares as much about your health and well being as YOU. Good for you for trying to find answers. Hang in there and don`t give up.
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Avatar_m_tn
I got bad CFS about 3 years ago with my sleep apnea getting worse.  I have it every day now.  
My cortisol was 2.4 and I don't know why.  but if you take hydrocortisone or prednisone can't you damage your adrenals or get brain damage??  some online studies say that glucocorticoids destroy neurons in the hippocampus...
anyway it is terrible to have CFS and sleep apnea
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Avatar_f_tn
OMG I KNOW UR PAIN ALL2WELL! AND UR RIGHT UR NOT CRAZY... I HAVE FIBROMYALGIA AND IT TOOK YRS B4 I COULD FIND A DR THT EVEN BELIEVED IN IT BUT NOW DAYS THERES SOOOOOOO MANY DRS THT GET IT! JUST RESEARCH DRS IN UR AREA THT DEAL W FIBROMYALGIA /CHRONIC FATIGUE S BC IT ALL RUNS TOGETHER AND MOSTLY JUS IN WOMEN BUT SOME MEN ALSO! ITS JUS FINDING A DR THT ALREADY BELIEVES IN THESE BC THEY R REAL AND HONESTLY U PROB HAVE WHAT I DO  BC CFS GOES W IT ALONG W A MILLION OTHER THINGS! IF YOU HAVE SORE MUSCLES AND PAINS U CAN'T EXPLAIN THEN U UNFORTUNATELY PROBABLY DO! BUT LOOK IT UP AND DO RESEARCH SO THEY CAN'T OVERTALK U AND B CERTAIN DNT LET EM BULLY U LIKE I DID FOR SO LONG! GOD BLESS UAND SWEET DREAMS... LET ME KNOW IF U NEED HELP OR ANYTHING AT ALL! GOOD LUCK WITH IT ALL XOXO
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Avatar_f_tn
I'm new here and on a tablet WHEWWWW FRUSTRATING! NITE THO2ALL AND ILL FIGURE THIS OUT SOONER THAN LATER I HOPE LOL
XOXOXOXO
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Avatar_f_tn
Just a few suggestions.  Check your local newspaper or use the Internet to see if there is a support group in your area for chronic fatigue syndrome and/or fibromyalgia.  If there is, it would be worth while to attend at least one meeting because you can often network with others to find out what doctors in your area are knowledgeable about these illnesses and are accepting new patients.  Also, you can generally find out what other community resources are available.  

Another option is to go to the Center for Disease Control website and look up chronic fatigue syndrome.  For better or worse (and most of us with this disease will argue for worse) there you will find the criteria you will have to meet to receive a formal diagnosis of chronic fatigue syndrome.  It was also the CDC that gave this illness it's mundane name.  It is not called this in any other country.  It makes it sound like you are just tired, but those of us that have suffered from this syndrome know it is devastatingly so much more.  This information may help you in determining if you have it and if you believe you do, it may also help enlighten your doctor that it is a real illness because the CDC says so.

I hope this information is helpful.  I have had both chronic fatigue syndrome and fibromyalgia since 1991, so I know how frustrating it can be.  Good luck to you and don't give up.
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Avatar_n_tn
I've had it for 17 years. Had docs tell me the most ridiculous things, like take a vacation, you are depressed, etc. I wouldn't waste time on anyone but a specialist. Depending on where you live, go to the co-cure website and look up a specialist. You may have to travel a bit, spend some money but if you need help, that's where to get it. You can also google cfs docs in your area, you will find posts from others recommending docs. Forums, like on Healthwatch, are a good place to post and ask for a doc near you...
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Avatar_m_tn
I am 24 as well, and mine has gotten worse over the past year.  I tried to talk to the doctors about it, I even switched once.  But the doctor said I was depressed so he, without question wrote me prescription to depression medicine.  I have anxiety but I am not depressed, and I have tried to say that.  I am tired, I stay home because I am too tired to work.  Every time I get a job, I fall apart because I get so tired.  I sleep a lot, I get up to 12 hours a sleep every night, I don't sleep that well, but good enough not to be tired.  My grandma has been diagnosed with fibromalgia and my mother has been diagnosed with chronic fatigue syndrome.  I promised myself I would never be like them, but here I am tired, exhausted, frustrated, and I cannot get anyone to listen.
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