My thoughts:

We do not *know* it runs in families. There is very likely a FAMILIAL form of it, as with some types of epilepsy, and I forget how many other diseases, but we need to be careful about blanket statements for a very good reason.

And since my FIL helped invent PCR tests and other genetic wonders---including pioneering in identification of genes related to disease----I want to add a caveat on genetics in general. Sorry to be preachy, but this is IMPORTANT. Yes, I know, shut up, we're sick of the pre-med biochem nerd, but honestly, this is vital if we're going to really discuss this sort of thing and look at the research that is/is not available. (I'm guessing it's mostly NOT. *sigh*)

INHERITED means your DNA came to you like this from your parents. The coding was present always (as with, say, eye color).

EPIGENETIC means the DNA's ability to function was damaged by external factors (ranging from disease to toxins to radiation etc) and that is why it malfunctions. (As with radiation-linked cancers, is the most obvious example I can think of.)

Therefore, even familial tendency could actually be linked to external factors (epigenesis) rather than actual inheritance of a glitchy bit of DNA. Until fairly recently, families rarely moved far from each other, and os were exposed to similar if not identical environments. (Think about leukemia clusters around old chemical plant sites, for the most dramatic example.)

I think there are several cause(s) or, more accurately, many clinical subtypes of FM that vary in cause, symptomology, and effect, with some overlap probable.

I favor the epigenesis angle in general. The incredible complexity of DNA, its replication, its functions, and the complexity that this gives the human body means it doesn't take much to cause one he** of a "domino" effect.

But I do not discount a familial subtype that is truly inherited. Too little study yet done to dismiss anything, really.

And if you think I can preach, get my daddy-in-law started. Holy crap!

Shutting up and going away now,
Leo

Don't go away Leo!!! If it were simple and straightforward it would not be a mystery, interesting, worth knowing.

I totally agree that environmental and lifestyle factors interact with genetics. We know that genes "switch on and off". Multiple, numerous gene can be responsible for a characteristic. See my response today about the biome. And so on. I am not trying to be simplistic.

Point is, it is a very interesting area of study and one which someone is undoubtedly pursuing. I would like to know more about it.

Emily, no fears, I know you weren't going simplistic, I just wanted to clarify for people b/c we hear "genetic" and tend to think "inherited", when there's more involved than that. At the end of the day, everything comes back to DNA---and time of life matters, too! (Yay?)

I think the research on this would have to involve huge sample sizes to be anywhere near accurate, and if sequencing ever becomes inexpensive and rapid, I wonder what it would show. Epigenesis or inheritance or something we haven't even imagined yet?

I do wonder what gene therapy would involve for FM. Or if it would be going more stem-cell direction, regrowing "healthy" nerves.

Ok. Maybe. But I would think tx to be aimed more at the regulatory system(s) for our nerves. I think it's an issue of poor regulation. Anyway, you might have access to more info about who is working in genetics. Heck if anyone wants a saliva sample they can have plenty of mine! :)

Leo is right, it is unlikely there is a "fibro gene". Research has shown that it is likely the result of a number of factors, both genetic and environmental. Different degrees of severity and different symptoms suggest that abnormalities (I guess you could say) of more than one (probably many) genes can contribute to fibro. There is also research looking into psychological factors. Not saying that it is all in anyone's head, but different people have different psychological tendencies (how we cope with stress, for example). Some of these might amplify fibro symptoms.

I didn't read the other comments, but what I do know is this....I found my birth mother 2 years ago. She had fibro and cfs and so do I. An extremely knowledgeable doctor here in Austin does that kind of testing and I am willing to bet she can answer that. I also saw a blurb on the news how they are curing illnesses by doing DNA testing. www.drliesa.com If you tell her Janelle sent you she would surely answer your question. I chat with her on fb from time to time after going through her program of testing. I don't get anything from it don't worry, it's just that I would like to know the answer to this as well, but it's low on the agenda right now and she is a very caring doctor.

Not a science wizard, but I do know this - I come from a large family - my dad was one of 12 & my mom one of 8. I have two brothers & two sisters & had 44 1st cousins. Add in my two sets of grandparents & that's a pretty large family. Guess how many of that number have or had fibro?

One & only one - that being little old me.

I do know math & that seems like a very small percentage to me.

Based on those numbers, I need more proof that it "runs in families."

Since I have had it for 31 years, I guess I have had it for several other members of my family. Just an old country boy's way of looking at life.

Like you, Bear, I have a huge family. Good Catholics on one side (no birth control) and hill-billies on the other (ditto).... Dad was one of 9, I have 32 cousins on his side (first cousins) and I don't even count on Mom's b/c her mom was one of 13 and her dad was one of 7.... so let's just say:

Little old me is the only FMer in the crowd.

Like I said, though, I do believe there are familial subtypes possible.

Just an old farm gal's way of thinking:-)

As far as running in families....when I found out about my birth mother and told them, both my Internal Medicine Doctor and the Functional Medicine Dr. Liesa said that 'genetics can play a role' especially regarding the mitochondria (cells).

I come from a family with six kids and three of us have pain syndromes. My brothers call it TMJ, but it affects more than their jaws. My father was an aspirin junky. One of his grandfather's stopped working his farm because of "bad health." So in my case, I'm saying genetics plays a big role. When I saw a rheumatologist who thought my siblings situation was significant.

Whoa Leo!
You are super smart and I did not understand half of what you said, so I am going to ask some really stupid questions now. I apologize to you and the rest of the forum in advance for my lack of brain power.

OK, so there is likely a Familial form of Fibro...but it is not inherited?
So, I take after my dad's side of the family same height, body type, even have the same birthday as my dad and his twin sis (irrelevant, but neat-o) EVERYONE on that side has high cholesterol and gets DX'd at the age of 35, as did I. My Aunt had fibro and I have fibro...do ll the other similarities like getting DX's at the same age with high cholesterol, or having the same body type, being the same height, having the same neuroligical problems, make any difference in considering the Fibro to be genetic or Familial? My Dad died when he was 35 so I can't really know how I would compare to him, but I have an Immune Disorder, and it is now thought that my grandmother had the same Immune Disorder I have but went undiagnosed....I have absolutely nothing in common with my mother's side of the family- so can someone be linked to just one side of a family and somehow inherit fibro or have the familial form of it you mentioned, especially if you are almost a copy cat version of your relatives physically and physiologically?

Dumb questions, I know, but I'm a little confused. I do not have a scientific mind, and need such questions answered as if talking to a 12 year old :)
LuLu

Let's see, my mom had fibro but died of breast cancer, her niece (sister's daughter) has fibro, I have fibro, and one of my nieces have fibro. Crohns runs on both sides of the family and RA runs on my dad's side. I have an autoimmune nightmare in my family!

Lulu, I am not answering for Leo, but if I would like to add my understanding and she can check on both of us. Fibro could be caused by many things so that some people might have type1, others have type 2, type 3, and so on. For example,
1) an environmental factor (infection, very stressful life event(s), toxins, radiation, whatever) that
a) affects a persons gene(s) which in turn affects their body functioning, or
b) affects the body functioning, but not the gene(s)

A genetic change (mutation) can happen as above, by an insult, or it can happen randomly (we don't know how). If the genetic makeup is affected and it happens before we have our children, that characteristic might get passed on to our children. (See Queen Victoria passing on hemophilia, a genetic mutation that seems to have started with her)

What actually gets "passed on" is very complex. It can be a dominant gene in which case the child is going to show the characteristic no matter what the other parent contributes. It can be recessive, in which case the child only shows it if it gets it from both parents.

It can also be expressed as a susceptibility so that if a person gets the genetic makeup and x or y and z also happens then they will get the condition, but not otherwise.

Scientists now talk about genes turning on and off depending on numerous factors.

The interplay of genes and environment is critical. For instance, the whole family has type ii diabetes and a genetic study shows a high probability of me also getting diabetes, but I eat right, exercise, and so on, and I don't get diabetes. Or, the other way around, low risk of diabetes, but....

Genetic makeup that is passed down can have a different effect on daughters than on sons if the gene(s) is recessive and on the x chromosome. That's the case with hemophilia.

Also, whereas some gene(s) will increase the likelihood of getting a disease, others might protect against it, or might make the course of the disease less severe.

It is all very complex, but there is lots of progress in understanding how genes work and what is most interesting to me is that there is progress in correcting some "mistakes". My mother had fibro. I hope that more can be learned for everyone's benefit, including the possibility that one or more of my children will end up with it.

BTW, as I understand it, you might have "gotten" x from your father's side, but "gotten" y from your mother's side, or y may have been all your own unique contribution to yourself. I put "gotten" in quotes because it is not a simple package to be handed down complete with bow and all.

Hey Emily!

Thanks for your explanation. It was very helpful.
I think I am starting to understand a little better. I'll have to some researching on my own, because when it comes to science I am a bit of a slow learner, so I will study and come back with more questions!
Thanks!
LuLu

I'm going to try my hand at this, too.

There is strong evidence for family groupings for fibromyalgia. Different genes have been looked at. As of now, they haven't found one gene. It may be that some fibro patients have one suspected gene, and others might have another of the suspected genes.

And as Emily said, the suspect gene may have to be "turned on" by environmental factors.

For instance I have a gene for Ankolosing Spondilitis (an autoimmune disorder) and I presume so do some siblings, but so far no one has AS.