Part two fibromyalgia framework series diagnosis, misdiagnosis and great fibromyalgia books

Fibromyalgia Framework Series: Diagnosis, Misdiagnosis and Fibromyalgia Books

Welcome to the second part of the fibromyalgia framework series.

The fibromyalgia framework series is going to present my (evolving) view of managing fibromyalgia. In 2018 some of my strongly held theories were proven true by experience and research. I’ll share this with you.

Part two fibromyalgia framework series diagnosis, misdiagnosis and great fibromyalgia books

Did you see the first part and download your free Fibromyalgia Framework Puzzle and Grid template?

Fibromyalgia Framework Part Two Video

Diagnosis, Misdiagnosis and Fibro Books

WHAT IS FIBROMYALGIA?

For a succinct introduction to the definition, symptoms, diagnosis and treatments for fibromyalgia see this post here.

Essentially, fibromyalgia is a chronic pain-based illness of unknown origin and cure. It effects approximately 3-6% of the world’s population. It is said to effect far more women than men, but there are definitely men who suffer with it too. It appears in-discriminatory in race, education level and socioeconomic demographics. As I said in the first part of this series, it is complex in that it is triggered, manifests and is helped by very different things for different people. Diagnosis and misdiagnosis is also a problem.

DIAGNOSIS

There are not many fibromyalgia fighters who have a short diagnosis story. A study of 800 patients found it took an average of 2.3 years and seeing 3.7 doctors prior to receiving a diagnosis[1]. It took me several years as the symptoms came on slowly and I was young; the doctors were disinclined to believe me, especially as my symptoms and their severity changed.

It is a tricky diagnosis: Fibromyalgia is often referred to as a “wastebasket” diagnosis. Doctors do have to rule out other illnesses before they can diagnose it. There is no specific test for Fibromyalgia that is widely used yet. The symptoms are very generalised: widespread pain on both sides of the body (subjective) for at least three months, fatigue, difficulty sleeping and difficulty concentrating. The tender point count used to be one of the defining features of diagnosis; however, tender points were found to be unreliable – you needed 11 of 18 to be diagnosed, and some days, you could have at least that many; others, you may have less. Often, you also have to find a doctor who wants to help you and believes in fibromyalgia. I do so hope this is becoming a thing of the past, but it certainly was an issue for me.

Diagnosis may not change much for you; I was already on Amitriptyline, so the doctor basically gave me the confirmation and sent me on my way. But when I was ready, and when the world had caught up with some information, this word led my search. It is also important to note that not everything you experience will be the fibromyalgia. For years my severe neck pain was considered part of the fibromyalgia and therefore not looked into further. However, the fact that the physiotherapist could feel a reason for the pain (trigger points) and treat it (temporarily) in a manner that didn’t work for any of the rest of my pain made me curious. It wasn’t until 2017 that I met a physiotherapist who told me about trigger points and myofascial pain syndrome that it all clicked into place. Researching this avenue has brought me much more success than just thinking it was the fibromyalgia.

During pregnancy, I experienced severe back and pelvis pain that was also dismissed as part of my experience of fibromyalgia and pregnancy. It turned out it was pelvic girdle pain and is treatable. Without proper diagnosis and treatment, rather than have the pain disperse once I gave birth, it continued for several months after. I experienced a lot of unnecessary pain. So please don’t let your doctor throw every single thing you experience into the fibromyalgia wastebasket.

MISDIAGNOSIS

One issue with fibromyalgia, besides the difficulty in obtaining a diagnosis and help, is misdiagnosis. One research paper puts it this way, “There is a disturbing inaccuracy, mostly observed to be over diagnosis, in the diagnosis of FM by referring physicians. This finding may help explain the current high reported rates of FM and caution physicians to consider other diagnostic possibilities when addressing diffuse musculoskeletal pain.”

One doctor who writes about fibromyalgia, David Brady, posits that as many as two thirds of patients may be misdiagnosed. Interestingly one of the things that he finds often misdiagnosed as “classic fibromyalgia” is myofascial pain syndrome. Whereas in my case, there is the presence of both – which adds another layer of complexity to these illnesses. Other issues mis-attributed to fibromyalgia include thyroid problems and nutritional deficiencies as well as other illnesses.

For an interview with him about misdiagnosis see this blog post from Fed up with Fatigue. I also mention his book, The Fibro Fix in my post on my five favourite books for fighting fibromyalgia below.

MY FAVOURITE BOOKS FOR FIGHTING FIBROMYALGIA

My Five Favourite Books About Fighting Fibromyalgia

I highly recommend reading From Fatigued to Fantastic (2001) by Dr Jacob Teitelbaum and The FibroManual: A Complete Treatment Guide to Fibromyalgia for You and Your Doctor (2016) by Dr Ginevra Liptan. These two authors are doctors who have fibromyalgia themselves. Their processes are useful and a very good place to start. I re-read these books periodically for a reminder or when I am exploring a new area.

See my blog post of My Favourite Five Books for Fighting Fibromyalgia for more information about these books.

[1] Ernest Choy et al, 2010 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874550/


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Fibromyalgia Definition, Symptoms, Diagnosis and Treatments

Fibromyalgia: Definition, Symptoms, Diagnosis and Treatment

Fibromyalgia is a chronic pain-based illness of unknown origin and cure. It effects approximately 3-6% of the world’s population. It is said to effect far more women than men, but there are definitely men who suffer with it too. It appears in-discriminatory in race, education level and socioeconomic demographics.

I have struggled with this illness for most of my life. I have also put a lot of work into my wellness journey. In 2017 I was the most well I had been since I was 17 years old.

Fibromyalgia Definition, Symptoms, Diagnosis and Treatments

For the concise, all in one place story of my journey and all that I do see my book Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia. Please note that this is an affiliate link, if you make a purchase I will make a small commission at no extra cost to you.

For a brief run down of what Fibromyalgia is, the symptoms and some treatments see below.

What is Fibromyalgia?

On the University of Maryland Medical Center website, Fibromyalgia is explained in this way: “Fibromyalgia is a chronic condition characterized by pain in the muscles, ligaments, and tendons; fatigue; and multiple tender points on the body.”

And on the same page, they list the signs and symptoms of Fibromyalgia:

  • Widespread pain and stiffness
  • Fatigue [and]/or trouble
    sleeping
  • Paresthesia (tingling)
  • Irritable bowel syndrome (IBS)
  • Skin sensitivity
  • Heightened sensitivity to noises, bright lights, smells
  • Depression
    Headaches
  • Pain after exertion
  • Memory lapses/difficulty
    concentrating
  • Restless leg syndrome (RLS)
  • Dizziness
  • Anxiety
  • Hemorrhoids

However, the trouble is that Fibromyalgia seems to be very unique to each person: how it comes on, what symptoms are present, what helps said symptoms.

There is also a debate as to whether trigger points are present in Fibromyalgia or part of a separate issue called Myofascial Pain Syndrome. A lot of the above symptoms overlap with a lot of different conditions.

Some Associated Physiological Abnormalities

Research has found alterations in neurotransmitter regulation, immune system function, sleep physiology and hormone level control. A lot of research suggests that Fibromyalgia is the result of central nervous system dysfunction – specifically an overactive nervous system, stressing and exhausting the brain (Dennis W. Dobritt, Fibromyalgia – A Brief Overview).

Getting Diagnosed with Fibromyalgia

This great article from Fibro Daze explains why it takes so long to be diagnosed with fibromyalgia, the process and the Widespread Pain Index and Symptom Severity Scale.

Long story short, it takes a long time to be diagnosed – years on average and multiple doctors – because it is a tricky illness with no widely accepted test and because a multitude of other illnesses must be ruled out. This is particularly difficult because Fibromyalgia tends to co-exist with a multitude of other conditions. It is a disease of mimicking and misdiagnosis.

Fibromyalgia: Definition, symptoms, diagnosis and treatments.

Treating Fibromyalgia

There are a multitude of treatment options on offer. Some of them help a little, some help a lot, some help one person a lot and another person a little – therein lies the difficulty.

I have been sharing my journey for the past several years because I want to help you cut down the time it takes you to find what helps you. I have carefully researched, trialed and written about all of the treatment options I have tried.

There are few certainties in treating Fibromyalgia but here are some from a seasoned Fibromyalgia fighter:

  • Treatment will require multiple options
  • One option can help me incredibly and you not at all and vice versa
  • Sleep is king. Tackle sleep first. With medication if you must. This is a widely agreed finding from key doctors who treat Fibromyalgia including Dr Liptan, Dr Teitelbaum and Dr Vallings.
  • You can impact your quality of life.
  • Coaching can help you on your journey. See how you can work with me here.
My growing list of fibromyalgia treatments

Come and get your free list of treatment ideas

Treating Fibromyalgia: Manuals

I wrote about My Top Five Books for Fighting Fibromyalgia in this post. Start with Dr Teitelbaum and Dr Liptan – both of these doctors have Fibromyalgia themselves and treat people with Fibromyalgia.

What Works for Me

My Top Three Treatments to Fight Fibromyalgia
What Works for me: 9 Things to Fight Fibromyalgia
My Low Dose Naltrexone (LDN) for Fibromyalgia One Year Experiment

Treating Fibromyalgia Naturally

Why I’m Treating the Fibromyalgia as Naturally as Possible – Natural Remedies for Fibromyalgia
Natural Pain Relief: Supplements for Fibromyalgia Energy
Essential Oils for Pain Relief and a Pain Cream I am Loving
Natural Pain Relief: Supplements for Fibromyalgia Pain
Natural Pain Relief: Herbs for Infusion or Tea for Fibromyalgia
Giant Meditation Post
Yoga for Fibromyalgia with Handy Links

Pregnancy with Fibromyalgia

See my resources page here with all of my articles and products to help you have the best pregnant possible despite Fibromyalgia.

All My Articles on Fibromyalgia

What I Offer – this page lists all of my articles and products that I have created to help you fight Fibromyalgia.

My Journey: 2019

As of 2019 I am currently enjoying my third postpartum period. Both the pregnancy and this time have been much more tolerate thanks to LDN and all the things I have enacted to be more well. I am so thankful every day.

I am hopeful and I am excited as to what the future brings as I finish the time of my life where I am up at all hours of the night with babies.

My hope for you is that you keep fighting for yourself. Don’t wait for a doctor to do it for you. But do work with your doctor, find another if they won’t. If you want to work with me one-on-one then see here for more information..


For more information

Try my free micro course You vs Fibromyalgia: Arm Yourself with Knowledge

Curious about coaching for fibromyalgia?