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I am frustrated with the medical community. Anyone else feel the same way?


Posted by Valerie

Hi,

I am new to this site. I am frustrated.  

After 3 3/4 years of feeling ill all the time, I was diagnosed with Typhus, which I picked up in Croatia in October 2004. Since July 08, when I was diagnosed, I have been told by two infectious disease doctors that I never had Typhus. (Now I have been ill for 4 1/2 years.) So if it wasn't Typhus, what is it? No one has even bothered to try and find out. I have had to make suggestions to my PCP on what might be going on, and now she has decided I am anxious, depressed and a hypochondriac to boot.

So the diagnoses I have now are Chronic Fatigue, GERD, Esophageal and digestive tract peristalsis problems, anxiety, depression and somatoform disorder (meaning I am a hypochondriac), none of which I had prior to October of 2004 when I got bit by something in Croatia.

I am not tired all the time, but my body is exhausted. I have weak legs and arms. I feel like there is no energy in them. I feel like none of the nutrients I take in are getting where they need to go. My armpits, elbows and arms are sore a lot, especially during the night. I wake up feeling ill. My brain isn't functioning well, and my balance is off. In addition, I have lost 15 pounds in 7 months, and am not even trying. Other than a low white blood count, a very high RA factor, a high IGM and low Immunological profile tests (most of which are back to normal since getting treated for Typhus), my blood tests are fine. 

I don't have MS, Lyme disease, any of the Hepatitis', Sjogren's disease, any blockages in my digestive system, or any problems in my brain.

The only reason I have been able to go back to work after being out for 8 months is because I am taking an upper (legal drugs) in the morning to get me through the day, and a downer at night to help me sleep. I also take a whole lot of other meds through the day. (Prior to 2004, I took only over-the-counter meds.)

I don't like having to take all of these drugs. They are affecting all aspects of my life, from my love life to my thought processes. I am frustrated that all of the doctors I have seen cannot figure this out. I see a psychiatrist monthly (my PCP's suggestion) to get some of the drugs I need, a regular therapist, a physical therapist, and an doctor of osteopathic manipulation. My life seems to revolve around work, meds, and doctors visits.

I want my old life back. Could there be a parasite in my body causing all of this mayhem.? Can someone offer some advice? How do I get my doctor to take my symptoms seriously, get me off these drugs, and give me back some semblance of normalcy?  

Thanks

 

 
Answers (2)
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Dear Valerie -

Sorry for the delay in responding to you - I was away on an extended vacation.  As Alyson suggested above, I would suggest using the Good Doctor List to try to find a doctor who will take you seriously and work with you to get to the bottom of your illness.

It is certainly possible that you have Chronic Fatigue Syndrome or CFS (I have had it for 7 years).  It can often start very abruptly - mine began on March 2, 2002 - and is often initially triggered by an infection of some sort, but the CFS persists after the infection has been treated.

However, some doctors use CFS (or the more generic term chronic fatigue) as a catch-all term when they don't know what's really wrong (or they don't believe there's a real medical problem).  This is unfortunate because CFS is a very real illness with defined symptoms, but it is the reality with some doctors who haven't kept up to date with the latest research.  Many, many different conditions can cause fatigue and muscle weakness.

The best source of information on CFS is the CFIDS (another word for CFS) Association.  Their website is very informative, accurate, and up-to-date and even includes a self-quiz to help tell if you have CFS:

 

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

Here's their page with an overview of how to diagnose and treat CFS: 

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

If you think your symptoms match what you read there, then you should definitely try to find a doctor who truly understands CFS and knows how to treat it because there are many ways to help alleviate the symptoms, even though there's no cure (yet!).  The Good Doctor List is a good place to start.  One of the key, unique characteristics of CFS is something called post-exertional malaise (an awful euphemism!).  It means that any sort of physical or mental exertion can cause a sudden increase in symptoms (a "crash") afterward.  So, maybe you feel good one day and take a walk, but within a few hours - or maybe the next day - you suddenly feel as if you have a terrible flu.  Also, CFS is much more than just fatigue - it always includes flu-like symptoms which might include feeling feverish (whether or not your temp is actually high); vague, flu-like aches; recurring sore throat or swollen glands; etc.

That About CFIDS page that I listed above also includes a lengthy list of other diagnoses that should be excluded (on the diagnose page) - this is a good starting point for looking for other possible answers, if your symptoms don't seem to fit CFS.  Even if you do have CFS, it is often triggered by an infection, so you want to be sure any underlying infections are treated (and, again, a knowledgable CFS doctor can help with that).

 

Most importantly, don't give up.  I know how frustrating your situation is because most of us with CFS had trouble getting an accurate diagnosis.  It took me a year of serious illness before I was correctly diagnosed, and I'm one of the lucky ones!

 

Quit seeing any doctor who thinks you're making it up or that it's psychosomatic - you know something changed and there must be a medical explanation for it.  And of course you're anxious and depressed!  Anyone with a mysterious and debilitating illness with no clear diagnosis would be.  Make sure any doctor you see understands that depression is a common EFFECT of any chronic illness and that your physical symptoms began first (don't even mention depression or anxiety to a new doctor).  When you see a new doctor, go in with carefully documented facts - exactly when symptoms began, any previous test results, progression of symptoms or new symptoms, etc.  I know it's discouraging, but there must be a doctor out there who can help you find the answers you need.

 

Good luck -

 

Sue Jackson

www.livewithcfs.blogspot.com 

Hi Valerie,

First, I'm sorry to hear you've had so much trouble with your doctors. I am a CFIDS (aka CFS/ME) patient and had similar experiences when trying to get a proper diagnosis for all my ailments which I strongly believed to be related (and it turns out they are). It took me four years to finally find a doctor who took me seriously.

One doctor told me that my problem was all allergies and pretty much dismissed me. (By the way, that doctor also worked for the NIH...) The next one told me that I looked healthy and that I was probably going out and partying too much. (Seriously? Last I checked, sleeping all the time was not a party.) Another doctor told me that CFS wasn't a real disease and tried to convince me that I was just depressed. (In a rare moment of rudeness, I asked him if depression caused fevers...because I was constantly running a low-grade fever. He didn't really have much of a response.)

I am not a doctor, but many of the symptoms you described are ones that I have as well and are often related to CFIDS. Of course, it is very important that other diseases be ruled out as well before the diagnosis of CFIDS can be reached.

It sounds like you might want to look for another doctor. I know it's frustrating to go from doctor to doctor, but it's really important that you find someone you trust AND who takes you seriously.

I found my current doctor through the Co-Cure website: http://www.co-cure.org/Good-Doc.htm. This is a website that has compiled a list of physicians who treat CFS/ME and Fibromyalgia. Even if you don't have CFS/ME or Fibromyalgia, I have found that doctors who treat these diseases tend to be more compassionate and more willing to think outside of the box than many other doctors. They are also less likely to accuse you of imagining things or being a hypochondriac.

If you would like to learn more about my life with CFIDS, feel free to visit my blog at http://alysonscfidsblog.blogspot.com/. You can learn more about my own health history by reading my May 2009 posts.

NOTICE: The information provided on this site is not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on Wellsphere. If you have a medical emergency, call your doctor or 911 immediately.
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