Fibromyalgia stories: my diagnosis, by people living with fibromyalgia

I find it fascinating reading how people received their diagnosis of fibromyalgia and thought you might too so I am sharing many of them here from the fibro bloggers in our Directory. 

I have noticed a few common threads in these stories - many of us went to quite a few doctors before we received a diagnosis, many of us had to keep pushing to find out what was wrong, many of us found our symptoms were not taken seriously or took years to diagnose.

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'It took years for me to get a diagnosis … and I had to do it on my own.
Learning to become my own advocate, I finally discovered what was wrong. Of course, my symptoms were devastating. I felt like an 80-year-old trapped in the body of someone who wasn’t yet 40.' ~ Sue from Rebuilding Wellness.

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'Finally, they gave me a diagnosis of exclusion, something called Fibromyalgia, because their diagnostics are not sophisticated enough yet to source the true cause of the problem. They told me it is not terminal, but there are limited ways to treat the burning fire inside my muscles that debilitate me.' Leah from Chronicles of FIBRO

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'A visit to the Neurologist resulted in a bunch of tests but they couldn’t find any reason for the symptoms. He sent me to a couple of other specialists and they couldn’t find anything either. Eventually, through research of my own and pushing to see a Rheumatologist, I received a diagnosis of Fibromyalgia.' ~ Julie from Counting My Spoons

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'The rheumatologist was the first person who looked at me and said, “something is wrong, I can tell.” But all my labs came back fine, as always. So she diagnosed me with fibromyalgia because I did have all the tender points required to meet the diagnoses (and more). At the time, I didn’t really believe in fibro, not that I thought people were faking, more like it was a diagnosis you get when the doctor has no clue what is wrong. I fought the diagnosis for a long time.' ~ Shelley from Chronic Mom

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'In July 2009, I finally got to meet with a Rheumatologist, Dr van Zyl at Unitas Hospital. Within 10 minutes, he diagnosed me with severe Fibromyalgia! I was not crazy, and it was not all in my head! Finally, someone that believed and understood what I was going through.' ~ Angelique Gilchrist from Fibro Ramblings.

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'The second rheumatologist at 20 was the one who diagnosed me with fibromyalgia. By then I had a family history with it as well as my father had been diagnosed. At this time the tender point test was still something they did. And I had a whole lot of pain in those spots for sure.' ~ Nikki Albert from Brainless Blogger.

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'The symptoms came on gradually, starting with back pain, infections, shoulder pain, insomnia – and finally a referral to a pain clinic where I was told I had a chronic, incurable illness. I left school and spent the next year in a state of shock.' ~ Katarina from Skillfully Well and Painfully Aware.

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'Fibromyalgia was a diagnosis I received around the age of 27. Like a lot of people with this condition I was ill for a very long time before I was considered to have something more going on than just being stressed out. My initial symptoms were dismissed on a regular basis by health professionals who believed I was simply burning out from work, but I was becoming more and more unwell. So unwell in fact I became like someone in my 80s and not my 20s. It affected my ability to work, to socialise, in fact my ability to do anything.

After much back and forth with the doctor and referrals to the wrong clinics, I was eventually diagnosed with Fibro by a Rheumatologist and discharged from their care the very same day.' ~ Sarah at Me, Myself, and Chronic Illness Blog

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'From my childhood years up until early twenties I went from doctor to doctor undergoing laborious blood tests of all kinds to rule many illnesses.

“She just needs exercise and vitamins” was a common response from the clueless doctors.

After the familiar, stressful blood tests again doctors in NYC diagnosed me with having a connective tissue disease, but rheumatologists in London disagreed and named the culprit fibromyalgia. There you go, fm diagnosis in its simplest form!' ~ Alisha at The Invisible F.

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Fibro Friday link-up WEEK 461

 WELCOME to this week's Fibromyalgia link-up. 

Fibromyalgia is a chronic pain syndrome with symptoms of pain, in all four quadrants of the body, as well as fatigue and sleep disturbances. 

You will find out more about fibromyalgia, aka fibro, here from people who have it by clicking on the numbered links below. If you like the information you find it would be wonderful if you could share the posts, and their links, on social media so that even more people find out about fibromyalgia. 

Fibro thoughts from people living with fibromyalgia.

Here you will find many thoughts about fibromyalgia and what it is like living with it. If you click on the names of the people making these comments you will be taken to more information and the context of what they have said. 

'Diagnosis with fibromyalgia or any chronic illness can be life changing. Bewilderment, sadness, anger, fear and a torrent of other emotions can come to the surface as a newly diagnosed patient.' ~ Sarah Warburton

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'I was done feeling awful and hiding it. I was done putting productivity in front of my ability to reduce my pain and sickness. Yup, in that moment I decided feeling good was my number one priority and everything else could happen second.' ~ Leah Tyler

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'If I had a nickel for every time I’ve heard (or said) that stress impacts the symptoms of fibromyalgia, I’d be rich. I’m pretty sure that those of us who live with fibromyalgia already know that stress effects the symptoms of fibromyalgia.' ~ Julie Ryan

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'Back in 2011 when i got the Diagnose Fibromyalgia, i was more than happy that my healthy problems now had a name. But after a while i realised, it changed nothing. I still have my pain, i still have to fight to get accepted.' ~ Bettina Bier

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'It's important to address both the physical and mental aspects of fibromyalgia in order to manage the condition effectively. The pain and limitations caused by fibromyalgia can increase the risk of developing depression and anxiety. ' ~ Thom Byxbe

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'I realize now that I take the approach with doctors that they are automatically going to doubt me. I explain to them that I understand my nociceptors are wacko, that I don’t perceive pain properly, that it’s like brain damage.' Dee Dee

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'Just because I'm smiling doesn't mean I'm pain free. I live in pain 24/7 but I refuse to let it stop me' ~ Bethan Catherine Jones at Hello Fibro Blog

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'I know what it’s like to feel out of control when it comes to symptoms such as pain, fatigue, memory loss, super-sensitivities, and dizziness. If you’re familiar with fibromyalgia, chronic fatigue, autoimmune challenges, and chronic illness in general, you know what I’m talking about.' ~ Sue Ingebretson

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'Yes, Fibromyalgia is incredibly painful. It’s not one type of pain, there are multiple ways of feeling that pain. The types of pain that people with chronic pain can feel also seem neverending... No wonder so many Fibromyalgia patients are physically miserable.' ~ Chronic Mom

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'The biggest change in my life that followed my fibromyalgia diagnosis was leaving my career because I just physically could not keep up any longer with the demands of the job. I’ve never felt more conflicted about making a decision.' ~ Katarina Zulak

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'Fibromyalgia is one of the most common types of chronic pain disorders. Awareness of fibromyalgia has increased and it has been accepted as a legitimate medical condition. Yet, fibromyalgia continues to be a hard-to-diagnose condition.' ~ Sue 

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'But the most distressing thing about Fibromyalgia is people not recognising, or even believing, that your experiences are real. Even today, there is still a significant lack of understanding around fibromyalgia in terms of its causes, diagnostics and how to best manage it.' ~ Barbara 

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'From the time the term ‘fibromyalgia’ was first used in the late 1990s to today, this condition hasn’t had many breakthroughs in the research/medical fields. And despite the millions diagnosed with fibromyalgia, it largely remains a mystery to many specialists, researchers, and organizations.' ~ Brandi 

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'It is no secret that my secret is that I have Fibromyalgia. I am living with an invisible, chronic illness that is beating me up while pretending otherwise. To the eyes of people, I am too young, too lively, too good looking or even too faithful to be sick (I know, I’ve heard it all).' ~ Kooki Honor

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'If you are like most people who have experienced ME/CFS, Fibromyalgia, POTS or a similar syndrome, there is a real sense of relief when you finally receive a diagnosis. At least you know what you have now, rather than being labelled a hypochondriac.' ~ Dan Neuffer

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'With fibromyalgia you need to:  Learn what feels good and what doesn’t. Accept your limits. Put these habits into practice.' ~ Emmie 

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'My chronic fatigue, that comes from a couple of my chronic illnesses, is the thing that has been bothering me the most. It stops me from doing a lot of the things that I love and I honestly feel so frustrated and annoyed when I cannot do the things I want.' ~ Beverley

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Fibro Friday link-up WEEK 460

WELCOME and thank you for calling in at the fibromyalgia link-up this week. So pleased you could join us. Whether you are here to add your link or just look around, please visit some of the links below and see what others are writing about fibromyalgia.