How to Explain What It’s Like to Have Fibromyalgia to Those Who Don’t

How to Explain What It’s Like to Have Fibromyalgia to Those Who Don’t

For those who have Fibromyalgia, it’s hard to explain to your friends and loved ones what it’s really like. I’ve tried to explain it to others, but for one reason or another, it seems difficult to get across. To further complicate things, unless you know someone who’s willing to do an fMRI to identify the hotspots in the brain that show pain receptors  lighting up like a Christmas tree during a flare-up, diagnosis of Fibromyalgia is limited to a tender points test and co-morbid disorders. For those of you who aren’t familiar with the tender points testing, a Rheumatologist will press on a variety of locations on your body, and if you react to painful stimuli on these tender points, and not the ‘control’ points, they are recorded. Diagnosis of Fibromyalgia requires a minimum of 11 tender points of 18. Unfortunately, Fibromyalgia sufferers could score a 6 one day, and a 14 another, making this test unreliable. Newer tests use other diagnostic criteria, which is just as (if not more) vague:

  • Widespread pain lasting at least three months (both above, and below, the waist)
  • Presence of other symptoms such as fatigue, waking up tired and trouble thinking
  • No other underlying condition that might be causing the symptoms

Co-morbid disorders, which many people may suffer from well before the question of Fibromyalgia is raised, include:

  • Irritable Bowel Syndrome
  • Headaches/migraines
  • Insomnia
  • Brain Fog
  • Jaw Pain
  • Anxiety or Depression
  • Frequent or painful urination not caused by infection

Lastly, diagnosis cannot be properly achieved without ruling out a host of other issues that might cause chronic pain throughout the body, such as Lupus, Lyme disease, and Hashimoto’s. Now, look at the list of co-morbid disorders above, and think about the specialists and the testing that one would have to go through to be diagnosed with them, by ruling out other issues. Also, notice that many of these co-morbid disorders could be mistaken for other disorders. For example, Irritable Bowel Syndrome has no clinical test; rather, diagnosis is based on the elimination of other diseases that could be causing the symptoms of severe abdominal cramping, diarrhea, constipation, or a combination of both. Celiac disease, Crohn’s disease, and ulcers, for example, have to be ruled out through a Gastroenterologist who will no doubt put a patient through an endoscopy, a colonoscopy, barium swallow, and other tests of increasing invasiveness before the Gastroenterologist says, ‘well, it must be IBS.’

Good news is on the horizon, with a blood test developed by Dr. Kevin Hackshaw, a Professor in the College of Medicine at Ohio State University, which has proven to give reproducible patterns in the blood of dozens of patients with Fibromyalgia. He is hoping that the test will become available in the next 5 years, but until then, those who live with Fibromyalgia have to live with the stigma that many people, and even doctors, believe that Fibromyalgia is ‘all in our heads.’

So, I thought I’d piece together an article for those of you who are in the same boat, and desperately want to live a normal life, but need people to understand that to manage symptoms, you have to prioritize your life. Maintaining a healthy work-life balance with enough exercise (which is the only thing that seems to significantly help with symptoms) is of the utmost importance to us, and we are always walking a fine line. When a flare-up occurs, we have to prioritize. To avoid flare-ups, we have to prioritize. And if your Fibro friend has any of the co-morbidities, it is, trust me, a very, very fine line.

1 – Make a list of everything you need to do on your average workday. Include your shower, makeup routine/shaving, prepping each meal, work, volunteer responsibilities, shopping, taking kids to activities, helping kids with homework, taking care of any pets, and any social activities. Now, pretend that you can only do 3 or 4 of those things. If you’ve never heard the term ‘spoons’ in reference to managing chronic pain, this is what people are talking about. You start the day with a certain number of ‘spoons,’ and when you run out, you can’t do anything else. Which tasks can you cut off your list? How will it make you feel to cut those items?

2 – Complete a triathlon without any training at all, without sunscreen, on a hot sunny day. Now, imagine how you will feel when you wake up the next day. Your skin will be screaming from sunburn, and you won’t want any fabric touching it. Your muscles and joints will ache, and you have a headache from dehydration and heat exhaustion. Now, imagine that nothing will soothe your burning skin, no pain meds, epsom salt baths, or pain relieving creams will help your joints or muscles, and no amount of hydration, Ibuprofen, or Acetaminophen will touch that headache. That’s Fibromyalgia.

3 – Imagine constantly losing track of your basic belongings, and not understanding why. You’re constantly asking your kids if they’ve seen your keys, your wallet, and your phone. You may have trouble following a recipe. That’s Fibromyalgia.

4 – Imagine going to your doctor with a complaint, and being sent to a specialist, waiting six months for an appointment, another year for some kind of diagnostic testing, and then being dismissed from the specialist with no findings, and no direction to turn in next. Now imagine going to your doctor with 5 different complaints that all follow this path. That’s Fibromyalgia.

5 – Imagine being an active athlete, who volunteers prolifically in the community, at your kids’ schools, and on a Board of Directors. Now imagine having to stop doing all of it. Would you feel like you’d lost your identity? Would you feel guilty for letting down those who depended on you? That’s Fibromyalgia.

6 – Imagine waking up thinking you have the worst flu of your life. Your skin hurts as if you have a high fever. You have severe stomach cramps and diarrhea. Your joints are aching painfully. But when you take your temperature, it’s normal. Now, imagine pushing through stomach cramps, diarrhea, painful skin, and painful joints thinking it’s just a Fibro flare – only to discover it’s actually the flu, and you’ve been suffering needlessly. Fibromyalgia not only causes pain, but also masks other illnesses that you could have treated if only you’d known the difference. A Fibro flare-up paired with an IBS flare-up mimicking the flu can make your friend ignore a real stomach flu because they are so used to pushing through and moving on as much as possible, that when a real flu hits, they don’t always realize it right away. There are even more dangerous illnesses and diseases that Fibro symptoms can make your friend ignore, such as migraines = early signs of stroke, unexplained chest pain = heart attack, migraines = brain tumour. Now imagine that you’ve gotten so used to certain types of pain that you put your very life at risk. That’s Fibromyalgia.

7 – You made plans to go to a friend’s to celebrate a birthday, and committed to making their cake. You wake up and you have a migraine, you’re exhausted, and you can’t think straight. So you have to cancel – again. Would you feel guilty for letting your friend down? That’s Fibromyalgia.

8 – Your friends/family members infer that you’re antisocial, or that you just don’t care enough about them to make an effort to have them over or visit them. You’ve tried to explain your situation to them, but they won’t listen or think you’re a hypochondriac. That’s Fibromyalgia.

9 – You’ve spent more money on medications, nerve blocks, naturopathic remedies, homeopathic treatments, massage therapists, chiropractors, crystal healers, snake oil salesmen, and yoga classes than anyone you know has spent on any one of these in an effort to find relief, only to find that most don’t work, or only work for a little while (except crystal healers and snake oil, of course – we all know those work).

10 – When you go to the hospital, doctors and nurses are dismissive because your file is SO thick you look like either a drug seeker or a malingerer. After all the tests you’ve been through that have turned up nothing, you must be, right? That’s Fibromyalgia.

How would YOU describe your life with Fibromyalgia?


2 thoughts on “How to Explain What It’s Like to Have Fibromyalgia to Those Who Don’t

  1. After being dismissed and only offered narcotics for my complaints, I presented my family doctor with my research on fibromyalgia. He then did the tender points test and “viola”, I was diagnosed with fibromyalgia. It wasn’t a diagnosis I wanted because of its association with “malingerers” but at least with a diagnosis I had something to work with.

    2. To relate it to other people quickly and simply, I tell them to imagine having the flu every single day. Unfortunately, your description is more accurate.

    6. I fell when I was camping and my partner thought I had broken my ribs. I told him that it didn’t hurt enough for them to be broken. Several days later, I went to the doctor because of worse than normal nausea and he confirmed that my ribs were indeed broken. Another time I didn’t realize that I had a severe sinus infection because I was so used to headaches and sinus pressure.

    9. I could have travelled around the world with all the money I have spent on various treatments.

    10. I avoid the hospital at all costs. I usually only end up there when I am unconscious or someone drags me because they are too worried about my symptoms. Last trip was due to an eight hour nose bleed.

    5. I think this is actually the hardest part of the whole thing. Sometimes I think it would be easier if I didn’t remember my old life and who I used to be. When I feel like someone is treating me as a malingerer I want to rhyme off my degree, diploma, and certificates that I have. I want to ask them why I would spend $30k+ to attain those credentials, and why I would work two or three jobs at a time, while also volunteering, to build my career. Why would I choose this life? What is the benefit to me of being a “malingerer”?

  2. Oh honey, I can TOTALLY relate. My degree, my certification as a CSEP Personal Trainer, all my running and triathlon medals, all the years I worked multiple jobs (like you) because I could, and I loved it, all the years of hardcore volunteering, I wish they could see all that. And OMG, the times us Fibro folks dismiss serious illnesses and injuries because we can no longer distinguish between Fibro pain and something serious – if the medical community only understood how we ONLY seek care when it’s absolutely out of the norm for us but then they tell you to take acetaminophen and send you home without testing…there need to at least be awareness seminars for doctors, so that they understand that we were active, involved members of society who need their help to tell us if something more serious is wrong…hang in there girl, we’re all in this together. Have you joined Chronic Illness Bloggers on Facebook? It’s a GREAT page, and people are suffering from all kinds of illnesses, including Fibro. You might find some support there 🙂

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