Posted in Questions

What do you do about misdiagnoses?

I recently received an email from someone who suspects they may have fibromyalgia but after visiting half a dozen doctors for the last three years, she is conflicted and wonders whether it may in fact be in her head. She tells me that she “hurts all over and no one knows why.”  She wants to know if she should give up on trying to find a diagnosis and simply accept “that it is all in her head.”  She has been misdiagnosed over and over with IBS, migraines, anxiety, panic attacks, etc.   She wants know what she can do to get a proper diagnosis or whether she should just give up.

What doctors know?

It took me ten years to finally get a fibromyalgia diagnosis but before I discuss my experience, I want to talk about the process of getting a fibromyalgia diagnosis. Fibromyalgia is a syndrome and the diagnosis is a process of exclusion.  No doctor will give a patient a fibromyalgia diagnosis before ruling out a host of other conditions with similar symptoms such as infections, rheumatoid arthritis or lupus. Doctors will order labs and imaging tests. Rheumatologists generally diagnosis and treat fibromyalgia and the American College of Rheumatology was the first to determine criteria for the condition in 1990 and has only recently updated that criteria to allow doctors a better understanding of fibromyalgia.

Fibromyalgia is often misdiagnosed as something else usually depression or arthritis.  It has even been diagnosed as Chronic Fatigue Syndrome.  It can take several years and half a dozen doctors to get a diagnosis.  In addition, there will be misdiagnoses and when treatments don’t work, doctors know the diagnosis is wrong.   If arthritis is ruled out, fibromyalgia becomes a great possibility but if it exists, then the fibromyalgia may be more difficult to get.

My Experience

In 1998, I was living in Jerusalem, Israel and all I knew is that I was sick all the time.  I went to see an immunologist at a highly accredited hospital and looked at my labs and told me “nothing” was wrong with me, and that he would be happy to refer me to a therapist for further evaluation. That was probably the forth or fifth doctor that I saw for whatever was going on inside of me and I decided my quest for answers was over.

My first marriage ended in 2000 as a result of my health, among other things, and my ex-husband called me “defective.”  When I left, I had to leave my three daughters behind and only took my infant son.  That was ten years ago and when I filed for divorce, I tried to get custody of my daughters and my ex-husband’s lawyers told that I did not have a chance and that I would lose my son as well because of my so-called “mental instability” of which they had documentation of so I gave up trying to get custody of my daughters because my mysterious illness turned me into a mentally ill person.

In mid-2000, I was back in the states and trying to find answers. Because I was going through a messy divorce, it was suggested that my symptoms were a result of depression, stress and anxiety. I was prescribed Paxil and it only made me sicker.  Then Prozac, and after my symptoms continued to get worse, I weaned myself off and decided that “I was not crazy.”  In 2002, my health was getting worse and I will even nod off while I was driving.  No matter how much I slept, I was never rested.  I was dealing with nausea, dizziness, headaches, and extreme fatigue on a daily basis.  One day, I was sitting in the passenger seat of my sister’s car when my chest started to hurt and my right arm went completely numb – the first thing that came to my mind was a stroke or a heart attack.  Here I was at age 26, at a size 10 so I was not overweight, and I thought I was having a stroke or heart attack.  My sister rushed me to the emergency room.  A couple hours and several tests later, I was told nothing was wrong and sent home with a referral to a behavioral specialist.  No one wanted to hear about my laundry list of symptoms because they all thought I was crazy.

Towards the middle of 2003, I realized I needed to clear my head and I couldn’t do it near my family so I moved to a rural area of southeast Pennsylvania.  I didn’t even give my mother my address or phone number.  I wanted a clean break and I wanted to figure out whether what I was feeling was related to stress and anxiety or real.  Hundreds of miles from every one we knew, my son (three at the time) and I started a new life.  My health did not improve but it became clear to me that what was going on inside of me was not in my head.  I was transferred from doctor to doctor because no one knew what wrong with me.  This became the norm for the next few years.  Everyone was diagnosing my symptoms and no one was really figuring out what was causing all these symptoms.

In mid-2006, I had just been laid off from my job and was in the process of finding a new job when I would have what seemed like gallbladder attacks. After several trips to the ER and tests that found, yet again, nothing, I was at my wits end. I decided I needed to see a new doctor and start over because I knew I wasn’t crazy.  He was fairly new doctor in his early 30s and when he walked in and asked what was going on, I started to cry.  I told him that this had been the norm for me for the last eight years and no one could figure out what was wrong with me.  I was tried of being sick and in pain all the time and I just wanted answers.  After more tests that concluded nothing, I was sent in for a nuclear medicine scan which showed that my gallbladder want not functioning so I was scheduled for surgery in early September, only a couple weeks after I started a new job. My journey did not end there.  I never got better after healing from my surgery which took me many months and my all over body pain got worse.  I was sick all the time and it was one infection after the other.

In late 2007, I was remarried, moved back to my home town, had a new job with a great law firm and was pregnant.  While my health was still bad, I was feeling optimistic.  While I was pregnant, my pain symptoms had dissipated but I had morning sickness all throughout my pregnancy.  Despite that, I actually felt better than I had felt in a long time.   That did not last long because only days after my son was born, I woke up to every joint and muscle in my body swelled and my hands were curled into fists. What I did not know was that my life was about to change.

A week later, I was in to see my family doctor who told me she suspected rheumatoid arthritis and after lab work, she called to confirm her diagnosis.  Here I was a new mother, 32 years old, and I was looking at what I thought was a death sentence.  I picked up the phone and called my sister who came down and stayed with me until the baby was four months old.  If not for her, I am not sure what I could have done – I was barely able to hold a fork let along take care of a newborn.  My first trip to the rheumatologist confirmed fibromyalgia in addition to RA.

Never Giving Up

I don’t remember the exact date I was diagnosed, the onset of their symptoms and even what triggered the disease.  All I know is that for ten years, I visited doctors as my symptoms continued to grow.  I would tell them that I was hurting, I was exhausted and that sometimes, I could not get out of bed.   They would look me up and down like I was crazy and some would try to diagnose my symptoms.  However, I never stopped searching and even though I was deterred when life forced me to be, eventually, I would go back to my quest for answers.  All I ever wanted to hear in ten years that someone believed me and it took ten years and a lot of pain and suffering to find someone who did.

When I got my diagnoses, I was emotional mess but I learned that I wasn’t alone.  I learned through the experiences of others how to get my life back.  I also made a decision to tell my story so that others would learn from my experience.  I know that I have been blessed to finally have answers and learn from that experience.  I went through a lot to find answers but I am grateful that I did.  I learned to be a fighter and a survivor and I fight with everything that I got and more.  I also take each day as it comes and do what the best that I can when I can.  I am blessed with a wonderful family and friends who support me but they don’t always understand. Actually, they rarely understand but they try and, because of that, I fight.

So to my friend searching for answers…

What I can say is don’t give up and keep looking for answers.  Find doctors who will listen.  Trust yourself and your instincts.  Learn who you can confide in and who you can’t and keep believing that the answers will come.  Write your symptoms down daily so that you can show these to your doctor.  If you doctor doesn’t listen, then find a doctor who will listen.  My journey for answers took nearly ten years but I hope yours doesn’t and I hope my experience helps you. Unless you stand up for yourself and advocate for yourself, you are not going to find those answers so please do not give up.


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