Thursday, July 31, 2014

Friday, April 16, 2010 MS, Community Member, asks

Q: If it's not fibromyalgia, then what is it?

I have a 25 y/o sister who has developed a mutlitude of symptoms in the last 3 or 4 years. She has been diagnosed with fibromyalgia, but I don't agree with this diagnosis. To be honest, I don't necessarily believe that this is a diagnosis. My problem is the test (If you have pain in 11/18 specific areas then you have fibromyalgia).  I've spoken with a few doctors who agree that she likely has something else wrong, which we partly suspect because of her history.

 

However, I do believe that there is some sort of underlying condition and I want to help her find what it is. The treatments she is undergoing for her fibro are making her worse. Her worst symptoms are hand pain, rib pain, and hip pain. About 10 years ago, she had severe swelling/pain/discoloration to her arm which was diagnosed as RSD or what is now called CRPD. After therapy, pain meds, and regular use...things returned to normal. Around the time she graduated from college, she was diagnosed with interstitial cystitis which I understand is a chronic bladder infection(possibly autoimmune).  She is depressed and takes about 3+ hour naps every day. She is on a very long list of meds, some of which are fairly intense. I am concerned about her dependance on these. I can't understand what she is going through as I can't understand what its like to have chronic pain. What I'm hoping is that I can help her find what her real problem is so we can start treatments that are better suited to what she has. She is getting more and more depressed and it is affecting her job and her social life to an extreme.

 

Any suggestions on what she should do or what she may have?

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Answers (2)
4/16/10 11:21pm

Gosh, if I were you, I would feel exactly the same way that you do. Honestly, I think that "fibromyalgia", "RSD", "CRPS", sometimes "cystitis", "phantom pain", and the list go on, are all a form of central nervous system sensitization as described by David Butler and the NOI group. The nervous system is a tricky, sensitive "alarm" system. For that reason, not all pinched nerves hurt and sometimes everything hurts.

 

You and your sister should start by reading "Explain Pain" by David Butler. Knowledge is power and the way to find a better solution.

 

Dr. Christina Lasich, MD

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Cort, Health Guide
4/19/10 12:07am

You might want to check out, believe it or not, the "Idiots Guide to Fibromyalgia" which was co-written by Lynne Matallana, the co-founder of the National Fibromyalgia Association. The reason is that she found that behavioral therapies were very helpful in managing her fibromyalgia or 'central sensitization' or whatever you'd like to call it. If you have a sister who is not responding well to drugs perhaps these would be helpful. They do rely on turning down anxiety or perhaps we should say system arousal which we know exacerbates pain. It's is pretty clear that therapies that turn off the 'fight or flight' response can be helpful for some fibromyalgia patients.

 

 

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By MS, Community Member— Last Modified: 12/26/10, First Published: 04/16/10