What do you wish that someone had told you soon after you were diagnosed with fibromyalgia?
November 21, 2010 4:56 PM   Subscribe

You have been diagnosed with fibromyalgia by a general practitioner, rheumatologist or equivalent. What do you wish that someone had told you soon after you were diagnosed?

I have recently been diagnosed with fibromyalgia by a rheumatologist, and I am still trying to get my head around the diagnosis and its implications.

I would love to get people's lifestyle tips, recommendations for good online resources, support groups, online communities etc. etc, and anything else that you think that I should know about living with fibromyalgia.

Throw away email: fibromyalgianewbie@gmail.com
posted by anonymous to Health & Fitness (9 answers total) 10 users marked this as a favorite
Fibromyalgia is the latest of the things I've been diagnosed with, and here's what I've learned: You're the same person today that you were yesterday that you will be tomorrow. This diagnosis doesn't "change" everything. It explains some things that have been going on and now you know where to go from here.

The first thing you have to know about fibro is: a lot of people still do not accept it as a real disease. Even doctors. You may end up on the defense. It's not a pleasant place to be. and since this isn't a disease that anyone can see - you're going to find yourself telling people that even though you don't "look" sick you actually "are" sick.

Speaking of which, here's an online support group: But you don't look sick. They're good people. Also, get the Complete Idiot's Guide to Fibromyalgia - there are some good resources in there.

Good Luck!
posted by patheral at 5:23 PM on November 21, 2010

Seconding But You Don't Look Sick and especially the article there called The Spoon Theory; I've found it a useful metaphor on many occasions, especially as I have chronic fatigue as part of my own illness.

Also, if you're a woman (most people with fibro are, but I don't want to assume), there's ChronicBabe, which is a site specifically for women with chronic illness. The founder has fibromyalgia and posts a lot of resources. There's a forum as well.

And I just picked up this book, which has been getting excellent reviews in the chronic illness community. I can't really give a full review myself as I'm still reading it, but I like it so far.
posted by camyram at 7:19 PM on November 21, 2010

I've been labeled as having fibromylgia and arthritis in my spine. To give some context, I am in my mid 20's male, and have been in chronic pain for well over 10 years.
You become tired of doctors.
Tired of tests.
Tired of people asking whats wrong.
And tired of feeling like shit.
There are some good days, but those are rare.
You need to find things that help you, including exercises and staying moving.
Change in diet can be helpful.
You become use to medications, and trying to find anything to ease the pain.

Exercise has been great for me, even when I don't feel like it.
Cannabis is certainly helpful in the evening.
Having a heat pad is fantastic at times, and massages are wonderful.
Staying positive is useful.
A good book I just read about living with chronic pain is The Pain Chronicles by Melanie Thernstrom.
posted by handbanana at 10:40 PM on November 21, 2010 [1 favorite]

>>You have been diagnosed with fibromyalgia by a general practitioner or specialist...What do you wish that someone had told you soon after you were diagnosed

My husband was diagnosed with fibromyalgia about 15 years ago, and I wish someone had told us to get a second opinion because that specialist was loopy, and he used it as a catch-all diagnosis for anything he couldn't explain by something else.
posted by b33j at 11:26 PM on November 21, 2010

I second getting a second opinion. I'm not saying that you don't have fibromyalgia, but some doctors do use it as a catch-all nowadays - even as some doctors don't believe in it at all. I did get a second opinion and a third...

But yeah, it's worth it to know what's going on.
posted by patheral at 6:51 AM on November 22, 2010

Seconding b33j. Several doctors were leaning the fibro route with my wife a couple of years ago. It turns out a Vitamin D deficiency looks a lot like fibromyalgia. A year later we got a letter from a lab telling us that we may have received faulty results on a Vitamin D test. Thankfully we already knew that because her rheumatologist refused to quit on her and diagnose fibromyalgia. The way that doctor explained it to my wife, fibromyalgia isn't so much a defined disease as it is a set of symptoms that haven't been explained any other way. That may be because there is no explanation, or it may be because the doctor(s) haven't figured it out yet.

In my wife's case, simple OTC Vitamin D supplements made her feel 1000% better. My wife suffered with the symptoms for about 2 months while various doctors were failing to figure it out. She saw her internist, an infectious disease specialist, and orthopedist, a neurologist, and finally the rheumatologist who re-ran the Vitamin D profile. Speaking of infectious diseases, Lyme's Disease can present very similar to the symptoms associated with fibromyalgia. Has that been ruled out?
posted by COD at 6:52 AM on November 22, 2010 [1 favorite]

What I wish I'd known sooner is the connection between sleep disturbances, fibromyalgia, and chronic fatigue. It's not true that everyone who has sleep apnea snores. Since I wasn't snoring, I wasted a whole year before asking for a sleep study. Everyone with a fibromyalgia diagnosis should have a sleep study, since everything that disturbs sleep makes fibromyalgia worse. Getting my apnea properly treated improved my pain levels dramatically. There are other sleep disorders besides apnea that can worsen fibromyalgia, too.

I also agree that it's very important to make certain to rule out every possible alternative diagnosis. Many people who have been diagnosed with fibromyalgia actually have some other, more treatable, disorder. In addition to the others already mentioned above, a common one is hypothyroidism, whether undiagnosed, inadequately treated, or the sort of hypothyroidism that needs treatment with both thyroxine and liothyronine but is being treated with thyroxine alone. Low levels of free T3 can produce the exact same symptoms as fibromyalgia, though they're not the only problem that can do so.
posted by Ery at 7:39 AM on November 22, 2010

I am going to get on my soap box and bitch for a second. Some of these posts are undermining of individuals who live with chronic pain by suggesting the diagnosis is quackery, or easily taken care of by vitamins. This is not always the case.
While fibro may be misunderstood, a 'catch all (which I myself have considered hence getting further opinions and seeing specialists.), or not completely understood (similar to MANY diseases such as LGS or MS) it is still very real as is the pain.
I think its best to always explore every option when ones health is at stake, but the notion that a doctor who spent years of their life dedicate to medicine is much more competent than anecdotal evidence from the internet whom probably don't practice medicine, let alone study it at a scholarly level.
posted by handbanana at 8:32 AM on November 22, 2010 [1 favorite]

Doctor's are human too. They can be wrong. They can get bad test results from the lab which send them down a rabbit hole. They can be overly busy. Their ego can get in the way of doing what's best for the patient. Their financial situation can get in the way of doing what's best for the patient. Suggesting, as most of the answers here do, that the OP take control of the situation and not meekly accept the diagnosis of a chronic condition that will lead to expensive prescription drugs taken pretty much forever is in no way irresponsible.

If the OP has only seen a GP and rheumatologist, I would suggest there is a lot more work to do before accepting a diagnosis of fibromyalgia. I saw this not because of anything I read online, or any bias against western medicine, but because of intimate family experience dealing with doctors getting it wrong when it comes to the symptoms that the OP is dealing with.
posted by COD at 9:06 AM on November 22, 2010 [3 favorites]

« Older Drinking space and gaming space in Seattle   |   What the hell is my neighbor shouting about? Newer »
This thread is closed to new comments.