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 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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Raising Fibromyalgia Awareness in June.

May is Fibromyalgia Awareness Month worldwide but it is EVERY MONTH here and it is every day. 

You can learn more about fibromyalgia from people living with it by reading these blog posts. 

There is no catch here. We are not selling anything. We are trying to help raise awareness of this chronic pain condition. 

You can join in and help raise awareness this month by simply sharing this post or visiting and sharing some of the posts in this list. 

•  Fibro-bla-bla- WHAT? by Alisha Nurse

• Fibromyalgia Symptoms: What are the main fibromyalgia symptoms? by Lee Good.

• Just Diagnosed with Fibromyalgia – Now What? by Cynthia Cooper Baughman.

• What is Fibromyalgia (FMS) – NOT a pain symptom! by Dan Neuffer

• Fibromyalgia Diagnosis Checklist: 30 Things You Need To Know About This Chronic Illness by Cynthia Covert.

• How is Fibromyalgia so painful and what does the pain feel like? by Chronic Mom.

• What Fibromyalgia is Like for Me? by Robert Bimbler.

• Fibromyalgia May Be Invisible, But The Pain Is Real by Thom Byxbe.

• How Does Fibromyalgia Affect Day to Day Life? by Sarah Warburton.

• Why are you so tired by Mandy and Michele 

• Fibromyalgia ~ Interview with Nikki by Bettina Bier.

• My Struggle With Fibromyalgia by Windy J. Cumberbatch.

• The Truth about Living with Fibromyalgia by Bethan Jones.

• What Makes Fibromyalgia Symptoms Worse? by Melissa N Reynolds.

• Fibromyalgia and Depression the Undeniable Relationship by Susan Pearson. 

• Fibromyalgia and sleep problems by Blogger Bar

• Best Fibromyalgia Alternative Treatments By Your Fave Fibro Bloggers by Carrie Kellenberger.

We hope you find some articles of interest to you here. We also have a larger directory of fibromyalgia blogs that you can view. That's why we are called Fibro Blogger Directory. 

This Is Fibro for 2023 with Fibro Connect

Fibro Connect is our private facebook group to help people with fibromyalgia connect with others who have the same chronic pain condition and get their questions answered. 

We have a great group of men and women and for this year's Fibromyalgia Awareness Campaign we are doing This Is Fibro where we share our faces. On all social media we are using the hashtag #ThisIsFibro

We wanted to show that fibromyalgia can affect anyone and that people who look happy and healthy can be living with a chronic pain condition that keeps them in pain all day and all night. Fibromyalgia is mostly an invisible illness, though some people who have it may need to use, canes, walkers or wheelchairs and mobile devices due to pain, fatigue, foot problems and muscle stiffness.

You can join FIBRO CONNECT on facebook by answering two simple questions. 

You can see our awareness campaign in action at our Fibromyalgia Awareness facebook page and our twitter feed. We would love you to follow us there. 

Fibromyalgia Awareness in May 2023

I'm glad you could call in here to find out what we are doing this May to raise awareness of fibromyalgia. As you know May is internationally recognized as the month for Fibromyalgia Awareness with May 12th being Fibromyalgia Awareness Day. 

We are continuing with the This Is Fibro Campaign which we did last year.

It is so easy to join in. Just use the hashtag #ThisIsFibro on social media when sharing a post about fibromyalgia. 

If you are looking for something to reshare you can go to our social media accounts and reshare from there:

•  Facebook - where we have a new page called Fibromyalgia Awareness
• Twitter where we share posts 5 times or more a day and our account is called @FibroBloggers
• Tumblr
• Instagram - a new account 
• Pinterest

So will you be joining in with us this month and using #ThisIsFibro  Please comment below so we know. It would be great to hear from you.

There are already some wonderful people joining in and we would love to introduce you to them. They are all amazing advocates for fibromyalgia, in their own ways, and you would be wise to check out their social media accounts and follow them.

💜 Cynthia Covert The Disabled Diva on Facebook, Twitter, Instagram, Pinterest.

💜 Melissa vs Fibromyalgia on Facebook, Twitter, Instagram, Pinterest.

💜Rachel Barclift on Facebook, Twitter, Instagram.

💜Support Fibromyalgia Network on Facebook, Twitter, Instagram.

💜Mandy Farmer on Instagram, Pinterest.

💜Thom Byxbe on Facebook, Twitter.

💜Bindu at Beyond Fibromyalgia on Facebook, Twitter, Instagram.

💜Glenys R. Hicks on Instagram, Pinterest.

💜Carrie Kellenberger on Facebook, Twitter, Instagram, Pinterest.

💜Sue Ingebretson on Facebook, Twitter, Instagram, Pinterest.

💜Helen's Journey on Twitter, Instagram, Pinterest and tumblr.

I'm sure there will be more fibromyalgia advocates joining us so please call back in again.

I hope you have a great month of May. 

Temporomandibular disorders and fibromyalgia

 WHAT ARE TEMPOROMANDIBULAR DISORDERS?

Temporomandibular disorders (TMD's) are a group of more than 30 conditions that cause pain and dysfunction in the jaw joint and muscles that control jaw movement. “TMDs” refers to the disorders, and “TMJ” refers only to the temporomandibular joint itself. ~ National Institute of Dental and Craniofacial Research

WHAT IS THE CONNECTION BETWEEN FIBROMYALGIA AND TEMPOROMANDIBULAR DISORDERS?

Research at the National Institutes of Health, shows that Fibromyalgia patients often have a high occurrence of TMD's including both TM joint disk disorders and myofascial pain of the jaw, head, and neck muscles.

TMD's are separate disorders from Fibromyalgia, but many patients with Fibromyalgia have TMD symptoms. This makes sense to me especially as TMD's can often involve myofascial pain and that is very common in Fibromyalgia.  Myofascial pain causes discomfort or pain in the fascia (connective tissue covering the muscles) and muscles that control jaw, neck and shoulder function.

According to the TMJ Association scientists have found that 85% of patients with TMJ also experience other painful conditions. These comorbid conditions include fibromyalgia, chronic fatigue syndrome, chronic headache, endometriosis, interstitial cystitis, irritable bowel syndrome, low back pain, sleep disorders, and vulvodynia. They are considered comorbid because they occur together more often than chance can explain.

A 1999 study in Sweden actually concluded that Fibromyalgia is one of the causes of TMD. Two hundred and thirty-seven individuals with fibromyalgia affiliated to the Stockholm Rheumatologic Association were included in the study.

WHAT ARE THE SYMPTOMS OF TEMPOROMANDIBULAR DISORDERS?

The following are the most common signs and symptoms of TMD according to Johns Hopkins Medicine:

• Jaw discomfort or soreness (often most prevalent in the morning or late afternoon)

• Headaches

• Pain spreading behind the eyes, in the face, shoulder, neck, and/or back

• Earaches or ringing in the ears (not caused by an infection of the inner ear canal)

• Clicking or popping of the jaw

• Locking of the jaw

• Limited mouth motions

• Clenching or grinding of the teeth

• Dizziness

• Sensitivity of the teeth without the presence of an oral health disease

• Numbness or tingling sensation in the fingers

• A change in the way the upper and lower teeth fit together

The symptoms of TMD may look like other conditions or medical problems. See a dentist or your doctor for a diagnosis.

PERSONAL STORIES OF FIBROMYALGIA AND TEMPOROMANDIBULAR DISORDERS

* From Mandy at Mandy and Michele: Chronic pain has been a part of my life for 12 years. TMJ didn't show up until about 10 years after my first diagnosis. But I was on the look out for it. I was diagnosed with Central Sensitivity Syndrome with implications of chronic pain, myofascial pain, and fibromyalgia. The doctor showed me a Venn diagram with 12 issues that could be show up. TMJ was on that list.  

* From Julie at Counting My Spoons: When fibromyalgia entered the picture for me (about 2 years after my TMJ disorder diagnosis) my TMJ doctor told me that he felt they were connected. In fact, he believes my fibromyalgia is actually TMJ disorder.

* I believe they may be connected (perhaps the TMJ disorder was the trauma that sparked fibromyalgia), but separate entities. Read her full TMJ story. 

From Shelley at Chronic Mom: I initially had no idea that TMJ was associated with Fibromyalgia. I only found out the name TMJ a few years ago when another blogger wrote about the link and suddenly it all made sense. Although I was never officially diagnosed, I kept experiencing teeth, mouth, and cheek pain that wasn’t connected to any problems with my teeth. Eventually, a dentist gave me a mouth guard and that seemed to help somewhat, but I still wake up with pain in my face on a regular basis, especially when I’m stressed. Read her full TMJ article.

Katie Clark talks about how she get some relief from jaw pain in The Frozen Fascia of Fibromyalgia. She uses techniques learnt through experience and the ideas of Dr Geneva Liptan to help release the myofascia. Read the full article. 

SOURCES:

TMD (Temporomandibular Disorders) including treatments and helpful tips. National Institute of Dental and Craniofacial Research

The Chronic Pain Research Alliance (CPRA)

Conditions that coexist with TMJ TMJ Association

Presence of orofacial pain and temporomandibular disorder in fibromyalgia. A study by questionnaire. B Hedenberg-Magnusson , M Ernberg, S Kopp

Temporomandibular Disorder (TMD) Johns Hopkins Medicine

What is the Relationship Between Fibromyalgia and TMD? Head and Neck Pain Clinic

The relationship of temporomandibular disorders and fibromyalgia: Implications for diagnosis and treatment. James R. Fricton DDS

The relationship between fibromyalgia and temporomandibular disorders: prevalence and symptom severity O Plesh , F Wolfe, N Lane

Fatigue Resources for fibromyalgia or What Can Help With Fibro Fatigue?

In our polls, fatigue scored highest with 39% as the symptom people with fibromyalgia struggle with the most.  49% said they felt fatigued all of the time. These polls were done in our facebook group FIBRO CONNECT with hundreds of respondents. 

Fatigue is one of the most common symptoms of fibromyalgia and it is also one of the most difficult symptoms in fibromyalgia to manage. When you are struggling with fatigue it feels difficult to do anything to help yourself get out of the situation.

But do not give up hope. There are simple things you can try. 

Here we have a selection of fatigue resources. As you know treatments for fibromyalgia are not a one size fits all situation and you need to try something and see if it helps you. As a general rule of thumb, whether it is moving more, a new supplement or a new medication I would suggest to give it a try for one month. This way it is better to assess whether this regime is helping to reduce your fatigue. 

MOVING MORE: The number 1 treatment option for fatigue is EXERCISE. I know this sounds the opposite to what we would think (and feel).

The importance of any exercise program is to start slowly and to gradually increase physical activity.

People who can help you with exercise include:

a doctor specialized in rehabilitation,

an exercise physiologist or exercise therapist,

a physiotherapist with interest in rehabilitation,

community based exercise program tailored to individuals,

a hydrotherapy program,

tai chi instructor,

yoga instructor,

pilates instructor.

If you do not have access to these experts then a simple and graded walking program can help. Also my favourite form of exercise is easy to do if you have access to a pool. It can be as simple as walking laps of the pool or a hydrotherapy program. 

Personal experience from Katie at PainFULLY Living : 

When one has low endorphin production, they will experience:

• long-term pain throughout the body
• tender spots that hurt when they are touched
• muscle stiffness
• fatigue and low energy
• sleep problems
• depression

To combat this, doctors often push endorphin-building exercises such as yoga, swimming, and walking.  I  have felt this distinct change from a raise in my endorphins when I was in physical therapy.  When I showed up lethargic, hurting, and down, my PT would get me on the treadmill for 20 minutes at a rate that got my heart pumping.  Every single time, I found that I had way less pain, my mood was improved, and I had energy.  Read her full article 'Becoming Myself Again'. 

ARTICLES ABOUT MOVING MORE WITH FIBROMYALGIA:

What exercise works for fibromyalgia? 

Starting Hydrotherapy.

Yoga for fatigue: 4 Side-Effect Free Tools That Can Help You with Chronic Fatigue

RESTING MORE: This is also known as pacing. It is about finding the right balance of rest and activity for you. For many people this is a gamechanger that improves their fatigue. 

Personal experience with rest from Bruce Campbell PhD : 

I found that my rests were even more effective after I started doing a relaxation practice at the same time. Without the mental relaxation, my mind could race from worry to worry, so I experimented with various meditation procedures during my rest time. I found that focusing my attention on my breathing was the most effective technique for me. By lying down and keeping my awareness on my breath, I could relax both physically and mentally.

The principle I learned from all these experiments was that rest could have a dramatic effect on the energy available to me and on my symptom level. Taking a short rest break to re-charge my batteries expanded the number of productive hours in my day. Also, I found that I could avoid a long period of bed rest by taking a brief rest as soon I felt my symptoms beginning to get worse.

Get the Complete Pacing for Fibromyalgia Training video for free at Melissa VS Fibromyalgia. 

ARTICLES ABOUT PACING WITH FIBROMYALGIA

Pacing For Pain Management where Carrie describes why she paces and her rules for activities outside of her home. 

MEDICATIONS FOR FATIGUE

Can milnacipran help reduce fibromyalgia fatigue?

Answer From Kevin C. Fleming, M.D. at Mayo Clinic

In addition to relieving fibromyalgia pain, milnacipran (Savella) may help reduce the fatigue common in people who have fibromyalgia.

An antidepressant, milnacipran is one of three drugs that have been approved by the Food and Drug Administration to treat fibromyalgia. While relief of fibromyalgia pain can help people feel less fatigued, milnacipran appears to have an additional effect on fatigue — separate from that associated with pain relief.

Other treatments that may reduce fibromyalgia fatigue include better sleep hygiene, exercise and cognitive behavioral therapy.

OTHER TREATMENTS FOR FATIGUE

Vibrotactile stimulation is a new, non-invasive, non-drug treatment with possibilities in Fibromyalgia. In this study 'Benefits were perceived on unpleasant somatic sensations such as generalized pain and fatigue...' Read the full report.

DEEP BREATHING:  Learning deep breathing techniques turns on your body’s natural relaxation response and oxygenates your blood more fully. When you consciously breathe more deeply you feel calm and relaxed and at the same time energized. If you cannot attend a yoga class you can find many breathing videos on Youtube. 

FOOD FOR FATIGUE

What we eat affects our energy levels. When we eat affects our energy levels. Aim for balanced meals at regular intervals. Try to reduce sugars and simple carbohydrates. Choose plenty of fresh fruits and vegetables daily. B vitamins and iron have a key role in preventing fatigue. They can be found in animal products, including eggs and wholegrains, nuts, beans and green vegetables.

You can use Cronometer to check your daily food intake, for free, and see if you are getting enough nutrients in your diet and what you may be deficient in.

ARTICLES ABOUT FOOD FOR FATIGUE

How to make an easy immune boosting, pain fighting juice.    

VITAMINS AND MINERALS FOR FATIGUE

Please check with your doctor, pharmacist or naturopath to make sure new supplements do not interact with other medications or conditions you have. 

Have your B12, Iron levels and thyroid function tested in a simple blood test as these can cause fatigue. 

COENZYME Q10: Personal experience: I have experimented with a lot of treatments out of personal and professional interest. As an ND, I want to be able to talk to patients about what they can expect from treatment from an experiential point of view.

Of all the things I have tried for fatigue from fibro, the standout is Coenzyme Q10 (ubiquinone) and there is research to support this finding. Find out more here from Janet McKenzie  (Naturopathic Doctor).

THIAMINE: I have just read a report on B1 - Thiamine. In this study they found the patients’ fatigue declined by an average of 4.5 points while taking high-dose thiamine. The outcomes did not differ for individuals with or without a thiamine deficiency.

The exact mechanism for thiamine’s effects on fatigue is not clear.

You can read an in-depth report of the study here. 

D-RIBOSE: can cause low blood sugar and is not recommended if you have diabetes. It is a naturally occurring sugar that the body uses for energy.

Personal story about D-ribose from Sue at Fibro Daze: I first read about D-Ribose in Dr. Teitelbaum’s book From Fatigued to Fantastic. It was one of the first supplements I started take taking when I went off all my medications in 2012. My energy level increased rather quickly and I no longer needed to take a nap during the day. D-ribose supplements that are verified for purity can be rather expensive.

MAGNESIUM : Deficiency in magnesium is often linked to fibromyalgia. Increasing magnesium helps to increase energy and can help to reduce pain, tenderness, anxiety and depression. Magnesium is needed for the production of the ATP molecule which gives us energy for basic body functions. 

RESOURCES

LET'S RATE OUR FATIGUE:

a) How much has your fatigue reduced your activity during the past week in your personal life?

b) How much has your fatigue reduced your activity during the past week in your work life?

c) How much has your fatigue reduced your activity during the past week in your social life?

(This scale was designed for evaluation for the possible diagnosis of chronic fatigue syndrome. I think it may help us just to rate our own personal fatigue whether we have just fibromyalgia or have it with CFS)

PACING TRAINING: The Complete Pacing for Fibromyalgia Training video, for free, at Melissa VS Fibromyalgia. 

CRONOMETER Track your diet, exercise and health data for free. 

FIBRO CONNECT facebook group where you can discuss symptoms, and all things relating to fibromyalgia, with others living with it. 

I am an Amazon Associate and if you make a purchase through some of the links here it supports the work I do to run this directory.