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Old 08-11-2006, 10:34 AM   #1
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brugirl HB User
Red face somataform disorder/fibromyalgia

I have Fibro these past 16 yrs. and was searching the web for a disorder they say my grandaughter has and ran across the sight for somataform disorder and FM was listed. Anyone heard of it and have they ever been told they had this? Somataform is a psychiatric disorder with un explained medical symtoms.

[url]http://www.emedicine.com[/url]

This is the sight I found the information at.
Let me know if anyone else has heard of this.
Thanks
brugirl

 
Old 08-11-2006, 01:19 PM   #2
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elmhar HB Userelmhar HB User
Red face Re: somataform disorder/fibromyalgia

Hi Brugirl,

Are you saying that your DGD got stickered w/this label? If so, I hope that she went through exhaustive testing to find a "real" cause for her pain, first.

Thanks to Freud, women have suffered a century-plus long history of attribution of any primarily female disorder to "hysteria." Somatoform disorder is a PC term for hysteria. Fibro sufferers have had to battle many ignorant medical assumptions, including this one. Many docs still believe it is primarily a somatoform disorder. Which is pretty dang unscientific, if you think about it. How do you prove someone has SD?

Researchers are finding physiological glitches that cause pain in fibro sufferers, but it usually takes several decades for research findings to trickle into clinical practice -- and then only when there is a profitable drug to be hawked. Unfortunately, at present much continuing education for physicians is done by pharma reps.

Antidepressants of various sorts are generally thought of as the "cure" for somatoform disorders. In a fraction of fibro sufferers, they do help with pain, but not for the majority. Another fraction of fibro sufferers finds energizing benefit from certain of the AD meds. But generally the ADs are not a cure.

Once you have a dx like fibro, or somatoform, it's all too easy for docs to attribute any new symptom to the sticker. So as patients w/these stickers, we have to be on our toes to see that HCPs are really doing their jobs.

Best wishes.

 
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Old 08-12-2006, 01:43 PM   #3
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Re: somataform disorder/fibromyalgia

Hi Elmhar,

Thank you so much for the reply, my GD has been labled with the Somataform due to spending the past 10 months in the hospital with pain and loss of weight, malnutrition(not an eating disorder) due to a medical condition of slow emptying of the stomach..It was my FM that I found on the Somataform sight that shocked me.I don't like the lable as it says there is no cure and for a 16 yr. old that is tough. I am 59 and I also have MS and Lupus.

I will be asking my Doctor on my next visit as to her advice and her honest oppion on this matter

brugirl

 
Old 08-14-2006, 10:43 AM   #4
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elmhar HB Userelmhar HB User
Re: somataform disorder/fibromyalgia

Hi BruGirl,

I'm curious whether your DGD has been put on a med, like an SSRI, and whether that is helping her pain & weight loss?

I truly hope that your DGD went through thorough testing for celiac disease/gluten intolerance as well as for thyroid function. Both of these diseases can result in slow emptying of the stomach.

I personally know, through my own DD, a young woman who went through absolute hell her senior yr. in high school, was put into psych hospital for "eating disorder", force fed, losing weight & getting sicker by the day, being accused of secretive purging, etc. when her parents finally took control of the situation & removed her from psychiatric care. They pursued vigorous physical testing & discovered that their daughter had had celiac disease, a very physical autoimmune disease, triggered by gluten in diet, that was destroying the lining of her small intestine & her ability to absorb nutrients.

If the parents hadn't pursued testing, it's quite possible this young lady would have died, and that her death would have been attributed to an "eating disorder," rather than the sheer malnutrition & wasting caused by celiac disease.

I realize you say that your DGD is being pegged w/a different label, however, somatoform is on the very same turf -- psychiatric. And this gives docs every excuse not to look further. So, if your DGD has been experiencing severe weight loss, I hope you can verify that she has had both the blood test panel for celiac as well as the upper endoscopy w/biopsy.

Thyroid disorder is typically not even screened for in young people, but if there is family history of autoimmune disorders, a full thyroid workup, including free thyroid hormone levels (free T3 &free T4) as well as thyroid antibodies (3 different blood tests) should be run. A screening test called TSH, the typical thyroid test run (actually it's a pituitary test) is not sufficient.

The best way to be on top of care in "medical mysteries" is to obtain actual printouts of results of all lab tests done. This is something that both your DGD & her parents would have to authorize (due to HIPPA regulations), however, by law, having & retaining this information is their right.

Best wishes, and I hope your DGD soon turns the corner towards health.

 
Old 08-14-2006, 12:50 PM   #5
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brugirl HB User
Re: somataform disorder/fibromyalgia

Hi,

Thanks for the information, I will be sure to checkup on these tests with my DD as we have a meeting in Boston on Tuesday this 8/15.

brugirl

 
Old 08-15-2006, 04:58 AM   #6
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RozIA HB User
Re: somataform disorder/fibromyalgia

What is DGD??????????

 
Old 08-15-2006, 08:29 AM   #7
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elmhar HB Userelmhar HB User
Re: somataform disorder/fibromyalgia

DD = dear daughter, DS = dear son, DH = dear husband, DGD = dear grandaughter.

HTH! (hope that helps)

 
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