Fibromyalgia... that's a thing? Help me understand.
September 12, 2013 11:49 AM   Subscribe

My wife is in the process of being diagnosed with fibromyalgia and I want to be informed, helpful, and sympathetic. More than that, I'd like to make sure I'm free from any crapulent and wrongheaded misconceptions about it. Can you point me to some resources that could give me a better understanding of fibromyalgia: what it is, how it works, some practical science background, etc.?

I had a lot of dumb and/or awful opinions about various things when I was younger that I've outgrown as I've aged, replacing them with kinder, better, more intelligent views. It's probably time for me to do that again, as my wife is apparently in the process of being diagnosed with fibromyalgia.

The last time I can remember thinking about fibromyalgia was years ago, and I'm ashamed to say, my opinions weren't particularly charitable. Frankly, based on what I apparently thought was rock solid anecdata (I knew one whole person with it... ironclad, right?), I was unconvinced it was a real thing. I wince when I even think of this, because I hate it when people do this to me about my ADHD, for instance. It's not that I still feel that way (even before it affected my family), just that I don't have much in my head about the condition except those dusty, discarded, dismissive thoughts from long ago.

I've read some threads here on fibromyalgia and a variety of things online, and I've come across tips for coping, some affecting personal stories, etc. That stuff is great. But can you point me to some nuts-and-bolts articles that will help me get a concrete understanding of what my wife is going to be dealing with? I'm looking for stuff to make my inner skeptic back off and STFU and to form a baseline understanding that I can work from as we get into more day-to-day stuff.
posted by DirtyOldTown to Health & Fitness (21 answers total) 13 users marked this as a favorite
Here is a list of the "best blogs" about fibro. Reading blogs written from a suffer's point of view might help.

I have a friend who suffers mightily with it. Flare can crop up unexpectedly. My friend can be fine one minute and in bad pain the next and she looks the same from the outside. Depending on where her flares hit her in her body, she may need help with particular tasks. My friend has the most trouble with her arms so she needs help with driving quite a bit. It varies from person to person, but just being sympathetic and available will go a long way.

Best wishes.
posted by michellenoel at 12:05 PM on September 12, 2013

Might want to read some basic rheumatology info sites. Something like this?

(I've never looked at that site before and a brief going over looked like it was reasonably free of drug company influence or quackery, but sorry if I wasn't thorough. I'm sure you can find something decent and similar)
posted by gaspode at 12:12 PM on September 12, 2013

This is an article about a functional MRI study that showed that the brains of people with fibromyalgia react differently (perceiving pain) than the brains of controls when receiving mild finger pressure:

If you look up the doctor on that article he has multiple things up on Pubmed, roo.
posted by feets at 12:15 PM on September 12, 2013

Even the doctors aren't entirely sure what it is, or even that it exists as a specific medical condition.

My sister-in-law appeared to have it. She had a lot of health issues, and a lot of doctors tried various things to assist her with them. She ultimately wound up on permanent disability (SSI) - an exceedingly difficult and rare situation for someone in their mid-30's. Many of the painkillers and other drugs that were prescribed to her were only minimally helpful. She could take various prescriptions that were given to her at doses that were shockingly high, and not only not fall asleep, but also be reasonably functional. Very high tolerance. Sadly, this turned bad one say and she ended up in respiratory distress, and passed away.

Along the way, I observed a lot, and did a lot of reading to try to understand more.

You will find a lot of discussion of the subject. It is extremely difficult to diagnose, largely because it is such a subjective thing. No doctor wants to be the one who makes the diagnosis, so often people are passed around from doctor to doctor, all of whom try variations on the same drugs and treatments. It is only in the last few years that certain indications are being taken as specific signs of fibro.

Ultimately, I suspect that this is a much more complicated condition. I know that my sister-in-law was sexually abused at a young age, didn't live in a stable home until her teens, and she had other significant family and mental health issues that she refused to deal with. It is, in my opinion, quite likely that the condition is some combination of physical and mental injury. The following is the best short summary I've seen:

I think the difficult bit is that you kind of have to get past trying to "diagnose" it. It's not like a broken bone, or high cholesterol. It isn't something that can be easily measured. The pain is real to the person suffering it, whether it is physical or if it is all in the mind.

I'll wind this up by saying that the medical doctors will try to treat this medically, usually with drugs or other conventional pain treatments. That may not be a sufficiently comprehensive way to address the condition. Do consider the possibility that there is potentially a mental aspect to this as well. Encouraging someone to pursue that avenue of attack can be very difficult, though.

Best wishes.
posted by jgreco at 12:18 PM on September 12, 2013 [2 favorites]

In some ways, fibromyalgia is the bottom of the diagnostic Pachinko machine. If your ball doesn't fall into this bucket, or this bucket, or that bucket, it's fibromyalgia. We just know so little about it.

Before anyone dismisses me as callous, all of the women on my mother's side of the family suffer from it - I know how real it is.
posted by DWRoelands at 12:21 PM on September 12, 2013 [5 favorites]

A friend of mine has had it for years, and recommends "Fibromyalgia for Dummies" to people new to learning about it (my mother's doctor recently suspected she has it now). I've found the "for Dummies" books to be pretty non-woo in general, so that may be a good source.
posted by EmpressCallipygos at 12:23 PM on September 12, 2013

IIRC too, there was a recent report suggesting that the pain dysregulation in fibromyalgia has something to do with innervation of the cutaneous blood vessels. I think it was this one talked about here. And the paper here.

There's a bunch of research coming out all the time.

(I index rheumatology journals - amongst others - for my job)
posted by gaspode at 12:24 PM on September 12, 2013 [3 favorites]

My wife's rheumatologist described it as the diagnosis you get for pain when they've ruled out every other cause. That doesn't make it less real, just less understood.
posted by COD at 12:44 PM on September 12, 2013 [2 favorites]

It might help if you think of it as a diagnosis of 'pain disorder not otherwise specified'.
posted by showbiz_liz at 12:55 PM on September 12, 2013 [1 favorite]

When you say "a concrete understanding of what my wife is going to be dealing with," do you mean the treatment she's going to be getting or the symptoms she's experiencing?

If the latter, it doesn't really matter what the diagnosis is. She might have fibromyalgia (which is currently not well understood) or she might have something different - the state of medicine today is simultaneously remarkable and full of gapingly large holes. But her symptoms exist and she can describe them to you, and regardless of diagnosis that is the best source of concrete understanding.
posted by trig at 1:30 PM on September 12, 2013 [2 favorites]

This is a patient information portal that's provided by the subscription service I use:

In my opinion it's one of the best resources available for this sort of thing. That is a fairly comprehensive overview of fibromyalgia with plenty of links to further information. I'm pretty happy they put my money to good use with stuff like this.

You're not alone in your previous opinion, just a few years ago the idea that fibromyalgia was a real medical condition was rank heresy and the mere suggestion of making that diagnosis was grounds for being thoroughly mocked by most medical doctors. If you would like more resources I would be happy to send you additional materials that go further in depth.
posted by hobo gitano de queretaro at 2:57 PM on September 12, 2013 [3 favorites]

I think part of your question was in regards to having concrete evidence that fibromyalgia is real. Sorry, still not a lot of that out there. I've comforted myself about that over the years by realizing that just because medical science hasn't caught up with a measurable test or evidence for something that otherwise has no apparent marker doesn't mean it doesn't exist. Medicine is constantly evolving and fallible. I know my pain and fatigue is real, whether or not there is a test yet that legitimizes it.

To me, the best explanation of fibro is that it is a neurological disorder in which pain signals are amplified. The best description of fibro is that it is as if the pain signals are constantly turned up all over my body, causing me to feel a burning gnawing pain in the absence of any stimulus. Everything is amplified, so that even after a simple exertion I feel as if I am recovering from a marathon. Or aching from the flu. All. The. Time. The exhaustion too is not like being a bit sleepy, it is like having the plug pulled out. There is no reserve to tap.

Over time, hopefully your wife will learn strategies like pacing and light exercise and realistic expectations that will make her able to adjust to her new normal. Hopefully she will learn to accept and love the changed person she is.

Your wife is lucky to have a partner who wants to understand this and be supportive. Fibro can be stressful on a relationship. She'll be adjusting to all the changes in her life (and if she's like I was initially, very frustrated and angry with herself). You'll need to adjust to the new her as well. Before I became sick, my husband and I were both go getters. I suddenly morphed into someone who had to dole out her energy very carefully and he was robbed of his activity partner. I also had to cut down to part time work, and housekeeping and child care slipped. It did a number on our marriage, and our marriage did not make it. I hope that you are able to weather the changes, build an extended support system and that you can give yourself nurturing and credit for doing so.
posted by Jandoe at 4:09 PM on September 12, 2013 [3 favorites]

This isn't concrete science, but one of the best explanations I know of what it's like to live with fibro and/or other chronic illnesses is The Spoon Theory. It particularly resonates for me because I currently struggle more with fatigue than pain, and when the energy runs out, as Jandoe said, it's like someone pulled the plug. Or as if it had been snatched away.
posted by camyram at 7:49 PM on September 12, 2013 [2 favorites]

My sister has been living with it since she was a teenager, and she's in her forties now. It's been very difficult for her to learn to live with it, and although she's been able to do so, it's been brutal.

The closest I've heard to an adequate layman's description is that, at some level, people with fibro don't build up pain tolerance. The pain they endure always feels pretty much like a brand new experience with pain. To illustrate further, I've had back problems for almost as long as she's had fibro, including three surgeries. I haven't been pain free for years, but my pain tolerance has grown (to the point that other people find it unsettling). My sister, the other hand, doesn't have that. The pain never gets to be something she can grow to deal with.

When she has a flare, it's horrible for her, and there's very little, if anything she can do for it except try to endure it.

If your wife is being diagnosed with fibro, you need to do what you can to help her, and you will need to be patient at times, as there may well be things she just won't be able to keep doing. One of the worst things my sister has had to deal with are people who don't understand, who wonder why she doesn't get better, or learn to deal with it.
posted by Ghidorah at 12:00 AM on September 13, 2013 [1 favorite]

Response by poster: I completely believe the pain is legitimate and the symptoms are debilitating. I continue to be a little uneasy about this as a "well, we tried everything else" diagnosis, though. I don't say that as part of any dismissive skepticism, but rather because it makes me worry that if they don't really know what it is, how can they treat it?
posted by DirtyOldTown at 7:49 AM on September 13, 2013 [1 favorite]

it makes me worry that if they don't really know what it is, how can they treat it?

From discussing things with my friend, they take a "throw everything at the wall and go with what sticks" approach. They have found that sometimes X helps some patients, and Y helps others, and Z helps still others...but they don't know quite why just yet. So your wife may be prescribed X, and then if that doesn't work, "okay, let's try Y....hmm, okay, if that didn't work, let's try Z."

For the record, some people have had success with some "alternative" healing methods like acupuncture and massage (but not the woo-woo kinds like, say, crystal healing or that kind of thing). So that may be an avenue to explore as well.
posted by EmpressCallipygos at 7:59 AM on September 13, 2013

How can they treat it? They don't. They don't treat the illness, just try to manage the symptoms. It seems to be chronic but not progressive. Thus, the antidepressants, the pain killers etc. Because that's all they can do. It must be frustrating for the docs as well. And what works for some does not work for others. There is bound to be a very frustrating period of trying and rejecting various things in order to find what works for her, and each person with fibro has their own little mixture. Mine is 5htp, massage, a daily walk, a mellow schedule, a toke on the weekend and a wonderful family. It's not about making it go away. It's about learning to live with it. Good luck.
posted by Jandoe at 11:13 AM on September 13, 2013

Response by poster: I appreciate everyone's responses and I will look over every link and consider every bit of advice given carefully.

I'm sure you will understand when I say I sure hope it turns out to be something else. We will see.
posted by DirtyOldTown at 12:01 PM on September 13, 2013

Fibro was just added to the list of conditions that qualify for Disability .

(Stolen from reddit):

Fibromyalgia was officially recognized by the Social Security Administration as a qualifying condition for Social Security Disability Benefits in a July 2012 ruling.
A complete copy of the ruling that provides guidance to SSD examiners is here:[1]
Based on these rules, the Social Security Administration will consider your fibromyalgia condition as a disability if your medical records demonstrates the following:
A history of widespread pain that lasts for at least three months. The pain may fluctuate in intensity and may not always be present.
Evidence that other disorders that could cause the symptoms or signs were excluded; and
One of the following:
At least 11 tender points on physical examination OR
Repeated manifestations of six or more fibromyalgia symptoms including:
cognitive or memory problems (often called “fibro fog”)
waking unrefreshed
anxiety disorder
irritable bowel syndrome
muscle pain
muscle weakness
pain or cramps in the abdomen
Raynaud’s phenomenon
hives or welts
blurred vision
oral ulcers
loss of taste
change in taste
dry eyes
shortness of breath
loss of appetite
sun sensitivity
hearing difficulties
easy bruising
hair loss
frequent urination or bladder spasms
If you are a sufferer of fibromyalgia and are not able to work, you may now apply for Social Security Disability benefits with your condition being recognized. To increase your chances of getting Social Security Disability benefits, it is recommended to begin or continue treating with your physicians. If possible, you try seeing a rheumatologist (a physician who specializes in conditions such as fibromyalgia).
Although this new ruling is excellent news for those suffering from fibromyalgia, proving a fibromyalgia case in front of the Social Security Administration can still be tricky. You should consult with an experienced Social Security Disability attorney in your area to ensure the best possible result for your case.
posted by futz at 12:04 PM on September 13, 2013

My wife is a doctor. This is her response:

The reason that there is so much confusion surrounding fibromyalgia, even among doctors, is that it was not recognized as a discrete entity until 1990, when the American College of Rheumatology first published the diagnostic criteria. Prior to then, the lack of objective findings led many doctors to classify it as a psychosomatic disease or an affective disorder. This attitude still persists today in some physicians. A new provisional set of diagnostic criteria was introduced in 2010. A rheumatologist is more likely to have stayed current on the subject, but a family doctor with many fibromyalgia patients can be just as knowledgeable.

Fibromyalgia is a diagnosis of exclusion, meaning that physician has to rule out other conditions which may cause widespread pain. A battery of tests, all coming back as non-diagnostic, can be very frustrating for patients, but is necessary to make sure that the correct diagnosis is made.

There is a clinical update on fibromyalgia in the most recent issue of the Journal of the American Osteopathic Association which can be accessed here: (Behind a $5.00 paywall, unfortunately). It goes over the most current research, clinical information, and treatment. It is intended for physicians, so may be a bit dry but has a lot of technical information.

The College of American Rheumatologists is the authority on the subject, but I haven't found any publications from them that would be oriented towards patients.

One piece of advice when speaking to your physician: It is good to do your research and be proactive when discussing your treatment options, but never ask for a specific medication by name. This is a red flag to doctors indicating drug-seeking behavior. Bring your information sources with you and use them to begin the discussion.
posted by Groundhog Week at 8:26 AM on September 15, 2013

Response by poster: I appreciate everyone's responses. In the end, the finding wasn't fibromyalgia. Threynhad my wife go through a series of diets that eliminated different foods to see if something she was eating was bothering her. The culprit? Meat. Well, not meat per se. Almost no one is allergic to meat. My wife is Eastern European and her doctors think the hormones and other chemicals in American meat were not agreeing with her. She's been a vegetarian for about two months now and she feels much better. We may yet experiment with organic/free range meat options, but she's feeling much better and happier lately so there's no hurry.
posted by DirtyOldTown at 6:45 AM on November 30, 2013 [2 favorites]

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