Explaining Fibromyalgia to Others
I remember the first time a doctor mentioned the word fibromyalgia to me. That doctor admittedly did not know too much about the condition, but he knew enough to think I might have it. I had never heard of fibromyalgia and neither had any of my family or friends. For years afterward I would mention having it and the response would always be, “What is that?” Nowadays when I mention it I usually get a response of, “I know someone who has that.” From further discussions with those who know someone with fibromyalgia I have found that most don’t really know what Fibromyalgia is or what the person they know experiences.
So, how should we explain fibromyalgia to others? I usually start off by asking the person I’m talking to if they know the all-over body aching with completely no energy feeling they have when they have the flu. When they say they do I tell them that having fibromyalgia feels like that every single day, except add in shooting shocks of pain and sometimes extreme dull, radiating pain. Sometimes I mention that the shooting shocks of pain feel the same as when a dentist hits a nerve while working in your mouth. I hope that by explaining what fibromyalgia feels like the person will have something to relate the information I’m giving them to without being confused with medical terms and processes they’ve never heard of before. If I continue on about mental aspects I also say there is this thing called Fibro Fog which makes it hard to recall words and keep trains of thought. I usually don’t go into further details unless the person asks for them. I know this is not an all-encompassing description, but it covers a lot in basic terms that I hope they will remember. I hope my explanation will raise awareness and enhance their relationship with those who have fibromyalgia – including me!
There are two good analogies that explain the amount of pressure that can cause pain in people with fibromyalgia. They both explain what 4 kg of pressure, the amount doctors apply to pressure points when diagnosing fibromyalgia, feels like. The first analogy is the amount of pressure used to close a Ziploc bag. The second analogy is the amount of pressure that will cause your nail to turn white when you push your thumb and another finger together.
Lynne Matallana, the founder and president of the National Fibromyalgia Association discusses how to explain fibromyalgia in this video.
What is your approach to explaining fibromyalgia to others?
Posted: March 23rd, 2010 under Communication, Living with Fibro.
Tags: Fibro Fog, Lynne Matallana, NFA, Pain, Pressure Points
Comments
Comment from Michelle BB
Time September 3, 2010 at 1:45 pm
I’ve had Fibromyalgia since New Years 2005. I used to feel “Normal.” My description to friends, family, and others goes a little something like this:
“You know when you haven’t been to the gym for a while and you work out pretty hard? The next day your body is sore. That is what I feel like everyday. And when a flare-up happens the pain is increased ten fold.” They usually kind of get it after that. And the ‘fog’ just seems too hard too explain – especially since i’m usually in one 
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Comment from Sheron
Time September 5, 2010 at 12:03 pm
I say its like the all over flu ache with arthritis joint pain. Oh, and you can’t concentrate. Oh, then you have to exercise!
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Comment from marilyn flyte
Time November 29, 2010 at 2:36 pm
I am trying to find out how to get a bracelet. Seems the store is not taking any more orders. How did you get yours?
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Felicia Fibro Reply:
November 29th, 2010 at 3:04 pm
Marilyn, are you referring to the NFA awareness bracelet I tweeted about getting? If so, I got that by donating to the NFA’s $10 for 10 million campaign. That campaign is over now, but maybe you could try contacting the NFA about getting one some other way. Good luck!
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Comment from Boopetta
Time December 31, 2010 at 2:50 am
I describe it as flu type aches but also to being a granny. You know how your granny always complains about aches and pains, forgets everything, gets really cold and really hot, can’t sleep well? Like that 
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Comment from Nancy
Time February 22, 2011 at 4:27 pm
I am the “granny” and have fibro too – no good. Well actually being a granny is the best medicine for fibro around – I love it!
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Comment from Jessica
Time June 3, 2011 at 1:27 am
I’ve used the analogy of flu like feelings often when describing the (very) general sensation of fibro to people, too. Usually most folks (I’ve found) can relate to this sensation, though they may not know what it’s like to live with it day in and day out for years on end.
When it comes to fibro fog, one description I use sometimes is to say that it’s a bit akin to the groggy, slow-to-process thought ability that happens to you if you’re suddenly woken up in the middle of the night (especially if you haven’t been asleep for too long, which I find is almost always harder to wake up clear-headed from), paired with an intense loss of the ability to retain short term memories well.
Not a perfect description, but I’ve found some folks find this description of fibro fog somewhat easy to comprehend.
Yours in the fibro fight,
Jessica
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Felicia Fibro Reply:
June 3rd, 2011 at 3:20 pm
Morning grogginess is a great description for fibrofog, Jessica! Thanks for sharing!
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Comment from Kim
Time September 14, 2011 at 5:51 pm
I actually created a video to do just that! I related sensations I feel with Fibro to sensations others may have experienced at some point in their lives. Hope it helps many others to explain what it’s like to their families, friends, and coworkers. (You can see it here: http://youtu.be/z0ztg6jEJ64)
Kim recently posted: Fibromyalgia: What it Feels Like…
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Felicia Fibro Reply:
September 15th, 2011 at 11:29 am
I shared your video with all my Twitter followers a couple days ago – thanks for sharing it here too!
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Comment from Neysh
Time January 18, 2012 at 9:12 am
I had just this problem, trying to figure out how to explain to others what Fibro felt like, so I have just recently started a blog (which I use as a learning tool to share with family and friends etc) Would love your opinion on my take of what Fibro feels like.
Neysh recently posted: What Fibromyalgia feels like
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Comment from Geri
Time March 27, 2012 at 5:37 am
Years ago I was diagnosed with fibromyalgia and would describe it as you have “the flu without the fever – the “hit-by-a-truck” kind of aches”. I
Later I was diagnosed with hypothyroidism and later still with gluten intolerance. Once was I was optimally treated for the hypothyroidism, then eliminated gluten, the fibromyalgia symptoms vanished.
Many seem to have similar experiences.
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Felicia Fibro Reply:
April 1st, 2012 at 10:50 pm
That is great that you are feeling so much better! I’ve definitely had tests done for my own thyroid and eliminated gluten (and many other possible irritants) and re-introduced them without any effect on my fibromyalgia. I did find out that I’m sensitive to soy and now that I avoid it my IBS symptoms have greatly improved.
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Comment from Geri
Time April 2, 2012 at 6:14 am
Oh yes, soy is a big one for many. Especially bad for thyroid patients too.
Just thought I’d mention that many people have their thyroids checked and are told they are fine, when they actually do have some dysfunction and would benefit from meds. It is widely underdiagnosed.
The AACE made a recommendation back in 2003 to narrow the range for TSH to 3-3.0, but it still hasn’t been widely implemented. So unless your doc knows more than to look for a high or low flag on your results, you could have a thyroid problem.
I felt as rotten when my TSH was at 4 (and technically in the “normal” range) as when it hit 7 and a doctor finally started treatment.
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Felicia Fibro Reply:
April 2nd, 2012 at 9:55 am
I agree, doctors seem to use thyroid #s very differently currently. My doc also put me on meds to try it out and see if it helped, but since I didn’t feel any different, she took me off of them.
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Comment from Lesley
Time August 5, 2013 at 11:34 am
I was diagnosed 6months ago and I am struggling. I am only 27, have a full time job and a 3 year old daughter. My husband thinks that its all in my mind as he works in the medical profession and apparently some doctors don’t accept fibromyalgia as a real condition. This stresses me out in trying to communicate my pain, fatigue and depression. I have been given naproxen which helps but no diagnosed with irritable bowl syndrome. I have gained 10lbs in weight n try to exercise regularly but I feel like no one believes my pain. Help! Can anyone give me advice as to how to reduce the pain.
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Comment from purplebee
Time September 28, 2013 at 10:42 am
Dear leslie
My heart goes out to you. I understand what you mean. My family also are in the medical profession, and many are entirely unsympathetic and in complete denial about my having any kind of ‘real’ chronic condition at all (even though I was diagnosed with FMS neally three years ago) due to exactly what you state. Have the courage to know that you ARE suffering and it IS real. Those who don’t believe in it are being unsympathetic and ignoring a what I understand is now a widely recognised condition. I know it must be very hard. Surround yourself with supportive friends and family who ARE being loving and supportive and be sure to give yourself the love and attention you deserve if you don’t have that support. love and gentle hugs xxx
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Felicia Fibro Reply:
September 3rd, 2010 at 2:50 pm
Thanks for sharing your explanation, Michelle! Fibro-fog is the hardest part for me to explain too, even when I’m not experiencing too much of it!:)
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