Misdiagnosed Fibromyalgia please read

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Date Joined Jun 2009
Total Posts : 56
   Posted 8/16/2009 1:10 PM (GMT -7)   
I pray that this post will be able to help others. After a decade of experiencing mysterious pains, and a seemingly unrelated myriad of symptoms in different parts of my body with no explanation, I was diagnosed with fibromyalgia in 2008. But that still gave no answer as to what was causing these symptoms, only the prescription medications were increased which caused problems of their own as I'm sure all of you know. I gave in to the fact that this is what life will be like from now on, just deal with the pain. But my loving wife did not accept that answer, and because of her we found out what was causing the persistent pain and swelling in the different parts of my body. I found out I have LYME DISEASE.

I'm trying to make this as short as possible because I need for as many people to learn and educate themselves about this disease and how many people diagnosed with fibromyalgia often have lyme disease. It is a disease that is very misunderstood and controversial. More than 50% who get lyme don't present with the classic bulls eye rash, and if it is not caught very early the lyme bacteria can remain in the body for years undetected. Lyme disease is a multi-system disease. Had it not been for my wife researching "misdiagnosed fibromyalgia" and my acupuncturist asking if I had ever been tested for lyme we probably never would have found out. Not many doctors are educated in lyme disease and the testing methods are very unreliable and often present with a negative test. Treating lyme is also very controversial.

I would recommend anyone with a diagnosis of fibromyalgia be tested by a LLMD (lyme literate medical doctor) because going to your family doctor isn't enough. The test which is first given is called an ELISA and is inadequate for determining if one has lyme. The test also going to an ordinary lab will also not be sufficient. A LLMD will do what's called a Western Blot test and send the blood work to one of several labs possibly iGenx which deals specifically with tick born diseases. If you need to find a llmd in your area please send an email to Stephanie@turnthecornerfoundation.

There are thousands and thousands of people out there who have lyme disease who don't even know. I highly recommend you look into the documentary Under Our Skin. Also, please look at the lyme forum on healing well.

I'm not saying every person who was diagnosed with fibromyalgia has lyme, but I would say it is definitely worth having the proper test done by a doctor who is experienced with the diagnosis of lyme disease.

I pray for all of you who are suffering and if this helps anyone, it has served its purpose.

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Date Joined Apr 2005
Total Posts : 17526
   Posted 8/16/2009 1:18 PM (GMT -7)   

Thank you, Tickedoff!  We do tell people to be checked out for all the other illnesses, including Lyme, that fibro mimics.  Doctors should really do this automatically because fibro can mimic Lyme, lupus,  and rheumatoid arthritis, among others. 

Check out our Fibro 101 thread...the first thread on the forum.  There is a link there to What Else Could It Be.  It is amazing how all these symptoms are so similar.  But, it is a good reminder to be checked out for Lyme....preferably by Igenex Lab in Palo Alto, California.  Your blood work can be sent there, I believe.


Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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