Miss Understood: Fibromyalgia Ignorance Hurts

Miss Understood: Fibromyalgia Ignorance Hurts

Before being diagnosed with my auto immune diseases I had no idea what most of them were, nor had I heard their names before. One of them is fibromyalgia, which to this day I’m still learning about.

When I first read about the symptoms of fibromyalgia I was skeptical. How could my body tell me I’m in extreme pain when it seemed like nothing was wrong with me? Why did I look normal on the outside but feel like I was on fire?

Arlene Grau

Arlene Grau

I can’t tell you how many times people look at me in disbelief when I try to explain what fibromyalgia feels like. It’s as if they think it’s all in my head and I’m looking for an excuse to use pain medication.

But if you’ve read my columns before you would know that I hate taking painkillers. Even if I am in uncontrollable pain, I’d rather stick it out and go the natural route. I would rather fix the problem than mask it.

I have several prescriptions for Dilauded, Norco, Percocet, etc. that I never filled or threw away because I knew I would never take them. If I can stay away from having to take one more pill I will do everything in my power to do so.

Wikipedia defines fibromyalgia as “chronic widespread pain and allodynia (a heightened and painful response to pressure). Its exact cause is unknown but is believed to involve psychological, genetic, neurobiological and environmental factors. Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder.”

When my friends ask me to describe it, I can only use one comparison, it’s like getting hit by a truck.  Every inch of your body is in excruciating pain, from the top of your head to the tip of your toes.

It’s not something you ever learn to control and unfortunately there is no cure. It’s either going to control your life entirely or you might get lucky and some of the medications on the market may minimize the symptoms.

I wish that was the case for me, but I suffer day in and day out from a disease I once knew nothing about. For the last five years it has terrorized my body, driven me mad, and made me feel as if I was being punished.

The only people who seem to know about it are those of us who suffer from it and there aren’t very many options for medical treatment around. It’s as if all the cards have been stacked against us — and if that’s not enough we have to prove ourselves to others.

Unfortunately, there are more non-believers than there are people willing to see that a disease like this exists.

Although there may be no cure for fibromyalgia, there is a quick fix for ignorance. You can educate yourself and choose to believe people like me who truly suffer everyday from something most people know nothing about.

Making a person feel validated can make all the difference in the world.

Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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I know what you’re talking about. Fibromyalgia is a complicated illness. I suffered with fibromyalgia and related conditions for over 13 years. I have had my illness in remission for more than 16 years. I have not had any medication for the symptoms and do not need any. I started a support group soon after my recovery and that grew into the nonprofit organization Fibromyalgia Coalition Intl. We also publish a quarterly magazine Fibromyalgia Solutions and host an annual conference / retreat to help people get their life back. We focus on what it takes to get well. Visit fibrocoalition.org for more information.

You are correct in pointing out that many people fail to believe in FM. In fact, in a recent survey, one in four family doctors thought all their FM patients were faking, and one in eight pain specialists agreed with them. And in a more recent survey, more than half of arthritis specialists felt that FM was primarily psychosomatic. I invite you and your readers to go to my website and download (for free) my rebuttal to such naysayers, called Fibromyalgia: The Answer is Blowin’ in the Wind, which is on my newsletter page. In that paper, I point out the huge body of scientific evidence proving FM is real, and discrediting every argument against it. As Bob Dylan sang: “How many times can a man turn his head and pretend that he just doesn’t see.” Unfortunately, with respect to FM, too many people continue to have their head buried in the sand. You can also enjoy a fun free video I made on the home page, my humorous rebuttal against FM disbelievers.

trudy myers

I even been treated with disdain by doctors! I have had them scoff at my pain drawings.I hate fibromyalgia

What a great article. You have written everything I try to say to people and they just look at me like I have 2 heads. I was diagnosed with fibro in my early teens and I am now 36. I finally came to terms with my disease at the end of 2009. I was let go from my last corporate job in 2009 because of being out sick for 2 weeks. I went back to work knowing I was going to be let go, and I was ok with it. That is when I finally stopped fighting the fibro and learned to live with it and except it as a part of my life. Since then, I started my own business and I no longer have that stress of working in the corporate world and wondering when I am going to get fired from this job. There should be more people like you who aren’t afraid to talk about fibro. I have blogged before saying that if there was a celebrity behind fibro, that people would really listen and maybe more doctors would understand it better. Because there really isn’t, the face of fibro is people like you and me. We just have to keep fighting to get this disease out there and have more people understand it better. Just one last note, you see who your true friends are when something like this changes your life. All I can say is the bad, negative people are no longer in my life.

Dennis Kinch

If you look at how far FM as a recognized disease has come you may realize that FM sufferers are still the front line warriors in bringing education and awareness of this disease to the public. My sister has had it since the 1980’s and I saw firsthand what she went through and I’ll never forget when she found a FM doc in 2006 who treated her for FM! The doc hadn’t done anything yet but my sister acted like she was cured. She was so happy. And only because she met a doc who understood the problem. The doc educated her a lot as to what was being done to help people with FM and to what the medical community had learned.

My sister knew, although this was a happy day for her, it would be years before its widespread acceptance would make it possible for all present and future sufferers to get PROPER medical attention. They have since put her on Lyrica as a trial drug and it has made a remarkable difference for her. She is now a lifelong fighter for justice of FM sufferers.

Those of us who have been around the pain community for a long time understand, through education, that there’s a lot of good info out there, that the “old school” doctors are slowly getting out of the business and that the “new school” docs are much more understanding and knowledgeable.

This makes our generation the “revolutionary soldiers, many of us dying before we see the victory. We pave the way by asking questions and learning and being loud. We are the weakest voice with the strongest passion. We care about each other and others who suffer and we are dedicated to stopping it knowing we may never see that day. We move the mountain by picking up a rock and then , doing it again and again, until we can’t crawl anymore.

We get called all the names of disbelief aimed at us by ignorant doctors who are sick of treating the true chronic pain patient. We get refused treatment by the shark insurance agents who already know what billing code they will use against us before we even call them. We live in poverty because all of our stuff is gone due to bankruptcy, all of our self-esteem gone due to non-validation and not being able to do stuff anymore.

Like any group in history trying to make a better world for the next generation there has to be the martyrs, the sacrifices, and we are it. I only hope the ignorance ends before my daughter has kids.


I exactly how you feel! Just because we cannot prove how much pain we are in, it is just assumed that either we are a mental case or we are drug seekers/addicts! In my opinion, if someone is given pain meds and they take them as prescribed, then logically it is because that they really are in pain! Stress has a HUGE impact on fibro making it far worse making it one of the most stressful conditions known!
With the dea war on drugs, we are being made to suffer more than we ever imagined possible! This has also caused the suicide rate for fibro & other chronic pain conditions, to increase more than ever before & also caused many who can no longer receive their meds. to turn to heroin & other illegal drugs!
To all these people & docs that believe it is just in our heads because there is no visible proof of pain, I ask if they have ever had a headache, and if so, can they show proof of that pain? My guess is no; but that does not mean they were not in pain. So why should be punished for something no one else can do? Just because people will abuse a med. does not mean that same med. can’t help many when taken correctly for the right condition! I wonder if people found a way to get high on blood pressure med. would they stop letting people that need it get it? Again, my answer is no!

John Quintner, Physician in Pain Medicine

Arlene, I do hope that our paper may add to your understanding of Fibromyalgia – “An evolutionary stress response for chronic widespread pain (Fibromyalgia).”