1. Health

Discuss in my forum

Adrienne Dellwo

New Test for Fibromyalgia: Should You Get It?

By March 15, 2013

Follow me on:

A company called EpicGenetics is marketing a new diagnostic blood test for fibromyalgia. Is this the great news it might appear to be? And is it something you should get?

This isn't a test that's available at your doctor's office. It's one that you order yourself online. The science behind it? Shaky at best, in my opinion.

You might remember, back in January, reading about the research that led to this test. Researchers said they used multiple methods to examine the cytokine levels of people with fibromyalgia compared to healthy subjects. (Cytokines are proteins that regulate your immune response.) They found that the fibromyalgia group had significantly lower cytokine concentrations than the control group.

So what does that mean, really? Yes, it shows a difference between us and healthy people. However, the study didn't look at anyone with other pain or immunologic conditions. We have no idea whether it could distinguish between fibromyalgia and, say, lupus or chronic fatigue syndrome.

On top of that, the test is based on only one study. Nothing is accepted by the medical community based on one study. That means, if you do buy it and get a positive result, it won't do a thing to convince a doctor that you do (or don't) have fibromyalgia.

It's frustrating to have something like this out there because of how desperate many of us are for validation. For proof. We'd all love to be able to point to a piece of paper that shows some number signifying that yes, this illness is real and I have it.

Sadly, this test is not that validation. Maybe it will be some day, after the science is shored up and confirmed in multiple studies, but today, based on one study? Nope. Sorry.

NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK

Photo Keith Brofsky/Getty Images

Comments
March 15, 2013 at 9:03 am
(1) Julie says:

Thanks for posting more on this. I knew it was too early to get really excited about it, but you really put it into perspective.

March 15, 2013 at 3:15 pm
(2) C says:

Thanks for the info. It’s very helpful

March 15, 2013 at 3:22 pm
(3) almosthuman22 says:

Long ago, I read about a doctor who said he could diagnose FMS by taking your blood pressure. According to him, having your blood pressure taken is painful for people with fibro, but not for others.

Just one old doc’s observation, but the BP cuff sure hurts me.

March 15, 2013 at 4:56 pm
(4) helen says:

Dr Daniel Clauw is not in favour of this test and as you say, it will do nothing for disabilty status. Plus it’s $750.

Definately going in the right direction though.

March 15, 2013 at 6:54 pm
(5) Another_Name says:

Wow, almosthuman22, that is really interesting. When the cuff is near and at full inflation, I find it very painful (pins and needles and painful pressure I swear is going to make my arim explode) – this does not vary regardless of who takes it. I have always thought it was the same for everyone … isn’t it? Hmmm … now I am going to ask my friends and family what they feel when their BP is taken. :-)

March 15, 2013 at 7:16 pm
(6) Jandroid says:

There is no definitive test for Fibromyalgia and this is preying on the desires and hopes of those weakened from pain and fatigue to get validation and answers. Save your money.

I’m not a doctor, but for what it’s worth since getting diagnosed with Ehlers-Danlos Syndrome Type III after a major “storm” of onset a year ago, I’ve yet to meet a fibro patient who doesn’t pass the *Brighton Diagnostic Criteria* (NOT just the Beighton bendy scale – though they often all pass that too) for EDS III aka Hypermobility EDS or HEDS, aka Hypermobility Syndrome (HMS) (same thing):

http://hypermobility.org/hypermobility/do-i-have-hms/the-brighton-score/

March 16, 2013 at 3:43 pm
(7) Elena says:

Any scientis can give a conclusion with just one experiment, so the test that they are selling is just not valid.

About to measure blood pressure, of course patient suffering Fibromyalgia will feel pain, but this is not a diagnosis test.
Unfortunately there are work to do in this field, in the meantime we must follow our Dr prescription.
In my case cyclobenzaprine help me a lot to sleep better and easy the pain, I take 5mg every night sometimes also tylenol. I receiving physical therapy, warm parafine bath (hands) and massage, and also take cymbalta……but i must say that every year is worst having “new pain” here, there and over there :(

March 16, 2013 at 6:09 pm
(8) Cindy says:

I always worry that they will come up with a test for Fibro then after all these years I find out I don’t have it. Then what?

March 16, 2013 at 8:20 pm
(9) Lauren says:

Thank you for the clarity of information on this test. If I had the money I would probably still get it even though this test may not be stating it is truly Fibromyalgia. It would seem it is still saying auto-immune which is very interesting to me.

I hope there are more studies on this test and soon. Again thanks for all your articles.

March 16, 2013 at 9:10 pm
(10) Lucy says:

You may be interested in this article about this test and the background at Fred Wolfe’s blog:.
http://www.fmperplex.com/2013/02/25/junk-science-junk-ethics/

March 17, 2013 at 1:12 am
(11) Ellen says:

I took cannot stand to have my blood pressure taken. It hurts so badly. I had no idea that this might have something to do with my fibromyalgia.

March 17, 2013 at 1:55 pm
(12) catherine says:

Your article says the levels are low in the Fibro patients. I clicked on the cytokine link and it talks about the imune system having high cytokine levels for CF people. I’m confused. is it high or low? if we are constantly in pain, wouldn’t the levels be high?

March 17, 2013 at 4:43 pm
(13) dfwmom says:

We won’t be getting this test, because we have other things to do with the money, we already the symptoms are consistent with FMS, the test will not distinguish FMS from any other immune disorders.and if the test came back positive, it would not provide any further relief from this illness.

There are other ways to demonstrate that a FMS patient has biological differences from normal patients, tilt table test, stress test, muscle biopsy. Doctors don’t do these tests because they cost money, create discomfort for the patient, and the results would not alter their treatment.

To me, that is the most promising development, that this new test demonstrates the role of cytokines in FMS, further advancing our understanding of the disease. I recently watched “Fibromyalgia: New Insights, New Hope” on Youtube. I wonder how the information covered in that video relates to cytokine levels.

The medical community creates categories to put illnesses into. It is often debatable where to draw a distinction. We may one day decide that there is a “spectrum” of immune disorder, and FMS and lupus both belong in it. So, whether this distinguishes FMS from another immune disorder may or may not be important. It depends on whether there are different treatments for the distinctive immune disorderse.

March 22, 2013 at 5:29 pm
(14) sue says:

I’m glad to hear there are more tests. It INFURIATES me when people self-diagnose themselves when I get so sick, have sacrificed family and marriage, as well as careers because of CFS and Fibromyalgia. I was tested for CFS in the nineties because I had a doctor who understood bloodwork and YES, there is and was a test Fibromyalgia was developed a few years later and going through a relapse of both at the moment, I just hate these illnesses.

I did go back to work after 10 years while on SSI and my doctor used to brag about me to her other patients. I did not have a choice and I wish I did but glad I finally got well enough to work a flexible schedule but I know I sacrificed my health because now I am in a bad state, and when I overdo, I deeply pay for it.

March 24, 2013 at 1:03 pm
(15) Jo-Anne Wizz says:

I live in Australia that would actually cost heaps more my doctor & specialist would advise if i need a blood test…. iusually have one for both cholest & cause i have a Vit B12 injection every three months i get tested every year for everything.

Always informative as always. NO, wouldn’t have the tests can’t afford it anyway…. havw a great fab day cheers?

March 24, 2013 at 1:17 pm
(16) Jo-Anne Wizz says:

Always informative as always. No I wouldn’t have the tests. I have tests yearly from my gp as for my cholest & i also have Vit B12 inject every 3 months. So Every year i have Full bloods tests for everything.

TOO expensive as i live in Australia would cost me heaps more than $750, i’m not allowing to patent my DNA NO WAY….

Keep up the good work. Have a great fab day cheers!

March 25, 2013 at 6:06 pm
(17) Geraldine says:

I would imagine if Fibro is an Auto immune condition Cytokines should be raised that is my understanding of things

January 16, 2014 at 11:58 pm
(18) sherrie says:

is it possible to have fibromyalgia, but the fm/a test show negative?

(i know if it is positive, does not necessarily mean you have it and it might be something else)

Leave a Comment

Line and paragraph breaks are automatic. Some HTML allowed: <a href="" title="">, <b>, <i>, <strike>
Top Related Searches
  • new test
  • fibromyalgia
  • gp
  • ©2014 About.com. All rights reserved.

    We comply with the HONcode standard
    for trustworthy health
    information: verify here.