Skip to Accessibility Tools Skip to Content Skip to Footer

Communicating Pain and Disability

It can be difficult to communicate the pain and suffering of migraine to your doctor, particularly if your migraines are chronic or intractable.

Pain is subjective

Even the best medical technologies can’t see or “measure” migraine. Doctors rely on patient reports to tell them what is wrong, but pain is subjective. Pain scales are little help: one person’s “8” migraine might be another’s “5”. Is there any objective way to measure the impact of migraine on a person’s life?

Reporting the disability associated with migraine

One potential way to get around this problem is to report the “disability” associated with migraine. Instead of telling your doctor how much your migraines hurt, try talking about the ways that migraine interferes with your life. Tell your doctor if your migraines are making you miss work or school. Are you too scared to schedule time with friends because you might get a migraine? Tell your doctor! There is evidence that doctors are more sympathetic to reports of disability than they are to reports of pain.

MIDAS tool

Recognizing this, headache specialists have developed a questionnaire called MIDAS (Migraine Disability Assessment) to help patients quantify the number of days lost to headache disability. You might have been asked to take this test at your doctor’s office, but if not, you can try it out here.

MIDAS is a relatively simple tool. It asks you to count the number of days over the last three months that you have missed work, school, housework, and social events. Your total score reflects the severity of your migraines. It can be a helpful way to track the effect that your migraines are having on your life. It can also be a useful questionnaire to bring to your doctor’s office.

Needing a tool for chronic migraine

That said, MIDAS is probably a better questionnaire for those who have episodic migraine than those who have chronic migraine. Some of the questions that MIDAS asks might not make a lot of sense to a person who has a migraine almost every day. For example, MIDAS asks, “How many days in the last 3 months was your productivity at work or school reduced by half or more because of your headaches?” How would someone answer that whose entire life — including his or her career choice (if, indeed, they are still able to work with their migraines) — has been shaped by chronic migraine? Or question 5, “On how many days in the last 3 months did you miss family, social or leisure activities because of your headaches?” How would someone answer this if they have no longer schedule leisure activities because their migraines are so bad?

We need better ways of communicating pain and disability to doctors. MIDAS offers one solution, but I don’t think that it meets the needs of people who have chronic migraine.

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

  • terry_s
    2 years ago

    Something I don’t think can ever be measured is the outright FEAR of having a migraine come on at a crucial time in a project or during any important life event. In my particular case I changed from being worried to being fearful because my migraine pain was accompanied by a TIA. For chronic sufferers, make your healthcare providers aware of any lingering effects as well as your state of mind before the actual migraine (mine have come with a personality change just prior, in some cases). The more information they have, the more they can provide to researchers moving forward on better treatments or preventatives.

  • Nancy Harris Bonk moderator
    7 years ago

    We’re glad you enjoyed this article. I think it is true sometimes we get stuck on talking about the pain rather than the disability. When we talk about how disabled we are due to migraine pain, rather than the pain itself, doctors may be better able to “hear” us.

  • Julie Lyon
    7 years ago

    Makes sense…discuss the disability rather than the pain. I never thought about it like this. I know it’s been a challenge for me to find a docs that really understand. Thank-you, Joanna.

  • Ellen Yezukevich
    7 years ago

    I (like many) tend to not plan social events due to migraines. If I have to, then I’ll either end up bailing because of a migraine or I’ll be worried I’ll that get one right up until the event. It’s not a big deal to me (I’m an introvert anyway) but I feel bad for the people I blow off, and for my husband!

  • Ellen Yezukevich
    7 years ago

    Actually the melatonin has helped decrease the frequency Mare- don’t feel bad!

  • Mary Yezukevich Wright
    7 years ago

    aw mac didn’t realize it was that bad 🙁

  • Krystal Dial
    7 years ago

    I will take that test, cause I miss a lot of everything and had to even quit my job!

  • Janet Geddis
    7 years ago

    Last time I filled out the MIDAS I scored through the roof. I’m so pleased to see that, according to this scale (and my personal reports!), my migraine disease is having far less negative impact on my life than it used to. 🙂

  • Winter West
    7 years ago

    I use the headcoolie once I have signs my migraine is starting. It works and its cheap!

  • Melanie Symonds
    7 years ago

    Great article. I have the same issues with the MIDAS questions. I now work part-time due to my migraines, so I rarely “miss” work, but that’s only because I have the flexibility to reschedule and go in on a different day if I’m not up to it. Does that mean I start with a 50% disability rate, or is it 0% because I’ve figured out a successful way to work around my condition? I had one employer tell me that even though I only worked part-time hours, I “gave the impression of a full-time presence in the office.” Nice complement, but it would have been better had he offered me full-time pay to go with it.

    And yes, when my migraines were constant, I was one of those who pretty much stopped planning or accepting any social engagements because it was just too damn depressing to have to keep canceling all the time.

    How about changing the questions (or adding ones) to read like this? How many hours would you have liked to work but were not able to because of migraine? How many leisure activities would you have participated in had your activities not been curtailed due to migraine?

  • WendyJo Mc Neill
    7 years ago

    You guys are lucky. When I have a migraine coming on, every animal I get around wants to kill me.

  • Catherine Charrett-Dykes
    7 years ago

    love this! thank you Joanna Kempner! this addresses real issues that we as cm and intractable face……i’ve had to use that scale w/my stim as part of the study…….one of the questions they asked me was about missed days of work…..for the questionnaire it is N/A but I had to quit because of cm…..but it does deal more w/the quality of our lives and how much it is impacted what we can and can’t do!

  • Suzanne Johnson
    7 years ago

    I wish there were a magic tool for diagnosing migraines. I hate migraine logs! Do I have a migraine today, how long has it lasted, how severe/pain level, how disabiling & what/how many meds did I take? It’s a ton of time spent on a bad situation that only seems to reinforce negativity in my life. And I didn’t even mention a food diary.

  • Ellen Schnakenberg
    7 years ago

    @Suzanne Johnson – I so agree with you. I know how necessary they are, but it’s a lot like addressing my food triggers – every time I have to shop or cook, I’m reminded of all the things I have had to remove from my life. “Can’t” this and “Can’t” that. I am a very positive thinking person, but I remember journaling everything for my doctors and getting depressed because I could see tangible evidence in that notebook of just how bad I really was. It stared me in the face every day. I really had to change how I thought about things… and that wasn’t at all easy. It’s still a struggle sometimes – like today. I have to keep reminding myself that because of all that work, I am a better patient and that there is hope.

  • Lou Scott
    7 years ago

    With 20 years of suffering from migraines and blessed to have auras I know when my migraines will start. In fact, just before they begin my boxers start whining to go to bed with me, within 30 minutes the aura starts. With the aura starting I use my migraines meds; nasal spray, pain med and phenergan (for nausea). I am able to sleep with my dogs for a few hours before I wake up in pain again. I am blessed to have dogs that recognize (they have never been trained) my symptoms before I do! Bless all of you.

  • Lou Scott
    7 years ago

    Aaron, check with the local boxer rescue sites to see if they will recognize your migraines. Mine are amazing!!! Thanks for asking. Good luck!

  • Lou Scott
    7 years ago

    …both have been neutered and spayed. They are inside dogs only and are the sweetest dogs.

  • Aaron Day
    7 years ago

    Oh well, in that case you are lucky to have them.

  • Lou Scott
    7 years ago

    Aaron, my boxers are brother and sister, bo

  • Aaron Day
    7 years ago

    Are you going to breed your dogs any time soon? I would love to have an alarm system for these blasted things!

  • Christina Bosman Fulton
    7 years ago

    This is such a good article. I have a headache every single day of my life. Some days I have many of the other symptoms of migraines, but not always. When I try to use the 1 – 10 pain scale I can’t even fathom no-pain, so a one is just the plain old everyday headache and I go up from there. Because I have headache everyday, I’ve just learned to work through it. By the time I get home at the end of the day, I have to go right to bed, but I’m determined to not miss work. But I rarely ever schedule anything on a work night because I’m totally wiped out. I’ve tried taking the MIDAS test several times but it never seems to accurately reflect my situation. It sometimes feels like being punished for working through the pain. And I guess the real point is, who knows how productive I could be if I wasn’t always working through pain.

  • Deb
    2 years ago

    Christina, regarding assessing pain level when you have chronic migraine, I recently had a nurse who asked what my pain level was say something very interesting. I was being prepared for surgery. I answered that it was difficult to assess my pain level because I have chronic migraine and was having a migraine right then as typical. She said chronic pain starts at a three. Because it is chronic, you have virtually no relief and tend to minimize your pain. Soon the doctor came in. He asked what migraine medicine I had with me. I told him Fioricet, but I hadn’t taken one due to the surgery. He told me to take it. Never before in a hospital have I experienced such empathy for my chronic migraine condition. What that nurse said was true. Chronic pain sufferers do minimize their pain level because they no longer have zero on their scale and because chronic pain is greater than periodic pain because lack of relief breeds intensity. Hope this helps you and other chronic migraineures better communicate pain level.

    All the best,
    Deb

  • Debra Baines Dickinson
    7 years ago

    🙁

  • Betty Lou Bosman Bielski
    7 years ago

    Have you seen an allergist? I also suffered many migraines and found after being hospitalized that I am allergic to lots of different things every season. I take allergy meds daily now, and the headaches have stopped. I saw an allergist and had all those shots in my arms and back. Wasn’t fun, but it was worth it.

  • Sally Colby Scholle
    7 years ago

    My MIDAS number is rather high as well. My problem is rating the pain of a migraine because it varies throughout the migraine….might start low, then reach a higher level, then lower after taking medication.

  • Marisol Padilla
    7 years ago

    I’m lucky I haven’t gotten fired due to my Migraine attacks, and that’s my answer to the doctors.

  • Diana Lee
    7 years ago

    Such a great point about MIDAS. When I was just a couple of years into my chronic migraine journey I assessed myself using MIDAS for the first time and was shocked at how high the number was considering that I was still trying (try being the operative word) to work. Full time. MIDAS is not great at assessing the subtle, yet significant, improvements a chronic migraineur can experience.

  • Poll