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What did you teach us about your fibromyalgia?

Fibromyalgia is a chronic, disabling pain condition that occurs more commonly in people with migraines:

  • Fibromyalgia affects about one in three people with migraines.
  • Migraines occur in about half of those with fibromyalgia.

Fibromyalgia is characterized by widespread pain, poor sleep, fatigue, mood problems, and digestive symptoms. The quiz below can help you see if your symptoms might be from fibromyalgia:

The London Fibromyalgia Epidemiology Study Screening Questionaire

Pain
Have you had pain in muscles, bones, or joints lasting at least one week?
Have you had pain in your shoulders, arms or hands? On which side? Right, left or both?
Have you had pain in your legs or feet? On which side? Right, left or both?
Have you had pain in your neck, chest or back?
You may have bibromyalgia if you answered yes to all four pain questions, and you have pain that affects both the right and left sides of your body.
Fatigue
Do you often feel tired or fatigued?
Does tiredness or fatigue significantly limit your activities?
If you answered “yes” to both fatigue questions, you probably have chronic, dehabilitating fatigue. This can be part of fibromyalgia.

Adapted from White, et al. J.Rheumatal. 1999;26:880-4.

Reproduced from The Woman’s Fibromyalgia Toolkit by Drs. Marcus and Deodhar, Diamedica Publishing 2012.

A few months ago, we invited people with fibromyalgia to take part in a survey asking about fibromyalgia symptoms and impact. This survey specifically focused on how fibromyalgia might affect relationships with the most important people in your life—your partner or spouse, children, and close friends. The survey was completed by over 6000 people with fibromyalgia and the results were just released in the medical journal Musculoskeletal Care. This is one of the largest published surveys of people with fibromyalgia—so thanks to all of you who opened yourselves to us and shared yourselves in this survey. Read below to find out what you and others with fibromyalgia told us about how fibromyalgia impacts your important relationships.

Fibromyalgia had the greatest impact on relationships with spouses/partners and children:

  • Over one in four people reported their spouse/partner did not understand their fibromyalgia.
  • Half of people said fibromyalgia had damaged a current or previous relationship with a spouse or partner.
    • 10 percent of people said fibromyalgia contributed to a relationship break-up.
  • One in three people said their spouses and their children resented when they couldn’t participate in activities with them.
  • One in four people said their spouses and children thought they exaggerated their pain.

Fibromyalgia has less of a negative impact on current relationships with close friends than with spouses/ partners or children. On the other hand, many people shared that having fibromyalgia resulting in losing friends, as friends stopped calling and offering invitations. People with fibromyalgia talked about friends not knowing how to react to fibromyalgia and some said they’d learned to stop letting people know they have fibromyalgia.

What do these results teach us?

Fibromyalgia has effects in many aspects of life. Most questionnaires focus on problems completing work or household chores. It’s important to recognize that fibromyalgia can also have substantial effects on your relationships with others and your ability to stay socially involved with family and friends. A previous study published in The Clinical Journal of Pain found that having satisfying relationships was important for functioning and quality of life. So the next time you’re talking to your doctor about your fibro symptoms and how treatment is working, remember to also consider effects fibro may be having on relationships in your life.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Julie
    7 years ago

    Well I called my Family MD this morning and going to get set up with an appt, especially after taking that test, to either rule it out or see what happens next. But Thank you Dr. Marcus for opening my eyes. That could explain why my chronic pain in my neck, shoulders, upper and lower back never seem to go away. And I thought that being stiff and sore in the morning was just part of getting old. Too many things w/Fibro ring a bell and I need to find out one way or another. Guess I will find out for sure. Thank you again for your article.

  • tucker
    7 years ago

    This is interesting in that it is presented by a migraine doc. I’ve recently been experiencing symptoms that I would definitely say were fibro whereas just 3 years ago, I would have said were from working out too hard. Funny, I hardly exercise much at all now b/c I’m so exhausted all the time.

    I’ve often wondered who to ask – the family doc that is impossible to get an appt with (I have a physical set for March) though maybe could get a “sick” appt in late Jan/Feb and certainly with a NP sooner. Or should I tell the headache specialist who I can see every month! It seems those meds would overlap. (This is all rhetorical of course – my friend with RA is treated for her fibro by her rheumatologist, who diagnosed her in the first place. It was her and the massage therapist who put the idea in my head in the first place at least a year ago.)

    But I also don’t doubt the whole “don’t tell anyone”. Heck, I stopped telling people my head hurt a long time ago. I just let my silence at work, the look on my face, or the frequent trips to the bathroom to cry, dry heave, or vomit be the key to my level of pain that day.

  • Dr Marcus author
    7 years ago

    Tucker — Dr. Marcus here. I started out as a migraine doc and was soon trained as a more comprehensive chronic pain doc, with lots of experience with fibromyalgia. It was interesting to see that I never heard about other pains when I had on my headache doc hat and usually people didn’t bring up migraines when they came to see me for fibro. Our program takes a holistic, “Tell us about all of your pains,” approach, which was really eye-opening to what people put up with silently. I think it just takes a couple doctors poo-pooing a problem for people so think they shouldn’t bother to bring it up again. So it’s not unusually for fibro to be undiagnosed for many years. Anyway, you can take the quiz in this blog and there’s a more complrehensive fibro diagnosis tool in my book, The Woman’s Fibromyalgia Toolkit. You will find this tool at this link: http://www.dawnmarcusmd.com/uncategorized/new-criteria-for-diagnosing-fibromyalgia. Complete the quizzes and take the results to whichever doc tends to be more responsive to you (the NP or the headache doc). Rheumatologists also treat fibro. There’s definitely overlap in treatment between migraine and fibro, but a lot of differences. Exercises are especially helpful for fibro and my book includes both exercise & yoga routines to help you get started. The diagnosis is the first step — and there are other health problems, like thyroid disease, that can mimic fibro, so it’s important to make sure you don’t have something more easily treatable like that.

  • Julie
    7 years ago

    And I was diagnosed with IBS around 2000 but I have that sort of under control by staying away from dairy and soy products.

  • Julie
    7 years ago

    If you have constant non-stop neck and shoulder pain and now there is pain on the inner part of the knee’s (something new I’ve just noticed) and the back seems to hurt as the feet (I put the legs, knees and back to old age) but I thought the neck and shoulder was due to the migraines. Can that be fibro as a comorbidity with Migraines???? My aching head is turning like a rusty hamster wheel. I turned 50 and just thought those aches and pains were part of the deal, as well as some weight gain (ugh). But in constant state of being tired. My get up and go left me a long time ago, if you know what I mean-feel zapped and drained. And if I can get my migraine pain down to a level 6 which is low for me if I try to exercise it makes the pain level go up or I tetter out.

  • Dr Marcus author
    7 years ago

    Julie — Just wrote a long reply to Tucker, some of which applies to you, too. As I mentioned to here, there’s a more indepth tool for screening for fibromyalgia you can find at this blog: http://www.dawnmarcusmd.com/uncategorized/new-criteria-for-diagnosing-fibromyalgia.
    If this screener looks like you might have fibro, take the results to your doctor. he or she will need to examine you to make certain you don’t have other health problems that might cause similar symptoms before you can get the diagnosis. Exercise is an important part of fibro treatment, but you need to do the right type and level of exercise. You don’t want to jump into something like a power walking or jogging program, which will likely flare things up. We have an exercise routine in our book and you can also work with an exercise trainer, yoga instructor, or physical therapist to help you develop a program that works for you. It’s helpful for them to know if you do have fibromyalgia so appropriate adjustments can be made to account for fatigue, etc. By the way, research has shown the reason you get more tired with exercise is because of changes in the muscles with fibro. Just like wild turkeys have a different proprotion of dark to white meat compared with domesticated birds, the same ids true of people with and without fibro, making the fibro people fatigue more quickly.

  • chipdooley
    7 years ago

    Everything in your like revolves around your fibro. If you don’t believe me get up and go to the bathroom specially when yoy having a bad flare up, see you either waited till you got up or made a list of other stuff to do like fill your glass, have your cigs/chew near buy,so you don’t have to move as much.

  • Dr Marcus author
    7 years ago

    As a doctor, talking to fibro patients has been incredibly eye-opening and humbling. I think it’s especially tough with fibro because you often look terrific, but feel terrible. In my experience, it’s hard to really understand fibro’s impact until you sit down and spend time learning about that person’s life and where fibro affects them. It’s usually much more complicated than people who have back pain or other pain problems.

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