Fibromyalgia Framework Series Part Eight Managing Normal Human Needs to Help Fibromyalgia

Normal Human Needs to Help Manage Fibromyalgia -Fibromyalgia Framework Series Finale

I can’t believe it is the last part of the Fibromyalgia Framework Series!

We have talked:

I hope that you have learnt heaps and have lots of things to try.

Today we are going to delve into normal human needs and a little deeper into how yoga helps me.

Fibromyalgia Framework Series Part Eight Managing Normal Human Needs to Help Fibromyalgia

NORMAL HUMAN NEEDS

I have held this belief for a long time, that we are human beings first and foremost, so there are some crucial keys to wellbeing that ought to be followed, whether we have a chronic illness or not. We cannot heal an illness such as fibromyalgia without having an overall healthy lifestyle. We cannot throw pills at this problem while not looking after our body. Our body is an interconnected being – what effects one area will effect another.

It is far beyond the scope of anything I can go over here, but I will I briefly outline some general lifestyle tips that will help us to live well, especially once we have begun to address the other parts of this series.

Address other health issues

For me this includes managing myofascial pain syndrome as it definitely contributes to the fibromyalgia and vice versa. For some this will be thyroid issues, other nutritional deficiencies, other conditions such as migraines etc.

Gentle exercise

Gentle exercise is very useful in helping our body to move and loosen up. Every human being is recommended to exercise for wellbeing. I will go into this in more detail below.

Healthy eating

Avoiding any foods we are allergic or intolerant to and making good choices to fuel our body.

Getting enough sleep

Although this is more difficult for us than most, it is a vital human need.

Address trauma

Some of us might need to address any emotional issues that may have contributed to our situation including childhood trauma or very stressful events that have occurred. You could tackle this alone through expressive writing or mindfulness. You may benefit from finding a counsellor.

Managing stress

This is going to be an ongoing and vital part of helping us to manage our condition. We are even more susceptible to stress due to our overactive nervous system.

Human relationships

Human beings are social creatures, even introverted people need some level of social proximity. I was able to make up for the lack of people in real life who understood the fibromyalgia with virtual connections in a couple of great Facebook groups. If you have people who don’t understand in real life, try to find some online. But try to keep it positive, venting can be useful, but so can solutions-focused discussions.

Hobbies

Just because we are limited in our energy envelopes, doesn’t mean we don’t deserve passion. Find what makes you happy and pursue it. Even if you have to adapt it for now, or ongoing.

If you would like help working through all of these areas and getting some action plans in place – check out my Kickstart Your Fight Against Fibromyalgia programme options!

Below we will chat about yoga and gentle exercise.

YOGA (OR GENTLE EXERCISE)

Yoga is one of many gentle exercise options for people with chronic pain and fatigue. One of the golden rules for fighting Fibromyalgia is to keep moving. Walking is my go-to form of movement, a gentle walk in the sunshine has multiple benefits for mind and body.  There are a ton of ways to move besides yoga and walking: a simple stretch, tai chi, Pilates, swimming, aqua jogging, weight lifting… the list is long.

We shouldn’t be doing so much that our pain and fatigue levels skyrocket, the aim is for better quality of life, not worse. If walking is currently out of reach, then stretch or wander around in a warm pool or try yoga.

Type “Yoga for Fibromyalgia” into Google and you will find a wealth of information trails to follow. Countless blogs and articles cover the benefits of yoga, meditation, and mindfulness for people with Fibromyalgia.

Find an entire post here  about yoga benefits, how I utilise it and some links to get you started if you’re curious.

Yoga for fibromyalgia my experience research with podcast video

Non-Yoga Workout
Here is the YouTube channel of a person who makes fitness videos especially for people with chronic pain and fatigue.

ACTIONS: Come and chat about any or all of these things at Melissa (you) vs Fibromyalgia Facebook group.

I would LOVE your feedback, so please take a couple of minutes to fill in the survey here. Your feedback keeps me on the right track when I create resources.


So that completes our series!

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If you have loved this series and would like all of the content and templates in one place, with space to write notes as you go…find it physically here (affiliate) and digitally here.

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Fibromyalgia framework series part seven fatigue in fibromyalgia

Fatigue and Energy in Fibromyalgia -Fibromyalgia Framework Series Part Seven

Welcome to part seven! I hope you’re enjoying this series and have made some progress.

Fibromyalgia framework series part seven fatigue in fibromyalgia

We have discussed: 

The Fibromyalgia Framework
Diagnosis, Misdiagnosis and Fibro Books
Tracking Your Progress
Sleep
Central Nervous System
Pain Management

FATIGUE IN FIBROMYALGIA

I hope that by improving your sleep, managing pain as well as possible and meditating that fatigue is also reduced. In this part we will discuss some extra energy boosters, energy saving pacing and supplements that may help. Severe, ongoing fatigue issues that are not mitigated by good sleep and management of pain will need a real partnership with a doctor to work through.

PACING FOR FIBROMYALGIA

Pacing simply means to alternate rest with activity in a manner congruent with your pain and energy levels.

Before I had begun my journey to wellness, when I was still just trying to cope with being a young woman in terrible levels of pain and fatigue, I had this glimmer of hope in the form of reduced work hours. I had begun to conceive of the idea of pacing and boundaries before I knew anything else. Reducing my work hours to ¾ time and cutting the two hours of commuting each day was the beginning of my wellness journey and such a vital step.

HOW TO ASSESS YOUR BOUNDARIES AND IMPLEMENT WISE PACING?

  • Write it down!
  • Write down what you do each day and track your pain and fatigue levels – look for the patterns over a two week period.
  • Listen to what your body is telling you. Grab an empty piece of paper and a pen and free write about your ideal day, see what your intuition is telling you.
  • Or, to start, take what you can get. Perhaps the first step you can make is to drop one afternoon or one day off work? Start there!

THE CFS/FIBROMYALGIA RATING SCALE

For a long time, I prided myself on being a 60 on the CFS/Fibromyalgia Rating Scale, “Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms” despite pain levels more in line with a 50, “able to do 4-5 hours a day of work or similar activity at home. Daily rest required. Symptoms mostly moderate.” (My italics)

I pushed myself to 6-7 hours per day minimum and suffered moderate symptoms. I had missed the key as suggested in this article on understanding our situation: “What is the highest level of functioning I can sustain without intensifying my symptoms?” (My italics) If my pain is at a moderate level, then I should not be striving to work the hours of a person with more mild symptoms, especially given that I go home to small children as opposed to being able to rest. You need to take into account your symptom level and your situation.

These articles are from the website CFIDs and Fibromyalgia Self-Help. They run a free course that takes the idea of pacing into more detail.

SUPPLEMENTS FOR FATIGUE

See this blog post for more information about supplements for Fibromyalgia energy.

Some things that might be useful for fatigue:

  • CoQ10 (ubiquinol in its most activated form)
  • D-ribose
  • Adrenal support herbs
  • Acetyl L-Carnitine
  • B-complex vitamin
  • A general multivitamin such as the Energy Revitalization System by Dr Teitelbaum

Action: I’d love to hear your favourite energy boosters, feel free to come and join Melissa vs Fibromyalgia Facebook group and let us know.


Do you wish that you could have all of the parts of the Fibromyalgia Framework Series, along with the templates to help you plan with space for notes in one place? There is! The Fibromyalgia Framework Series Workbook is available here. Find it physically here.  Please note that some of my links are affiliate links and I may make a commission at no extra cost to you.

Curious about coaching for fibromyalgia?

 

Fibromyalgia Framework Series Part Six – Pain Management for Fibromyalgia and Chronic Pain

Welcome to part six of the Fibromyalgia Framework series! I hope you’re enjoying this series and have come to join the conversation in You vs Fibromyalgia Facebook group.

The fibromyalgia framework series has been presenting my (evolving) view of managing fibromyalgia. In 2018 some of my strongly held theories were proven true by experience and research.

fibromyalgia framework part seven pain management

Note: My newsletter subscribers get access to the content first and exclusive access to the freebies I’ve made – if you want to sign up in time for part seven, click here.

We have discussed: 

The Fibromyalgia Framework
Diagnosis, Misdiagnosis and Fibro Books
Tracking Your Progress
Sleep
Central Nervous System

PAIN MANAGEMENT FOR FIBROMYALGIA/CHRONIC PAIN

We could spend a long time going through pain management options in depth, but that is outside the scope of this series. I will give you a brief introduction to the multiple options and give you extra reading you can follow up on. As you will recall from my fibromyalgia puzzle, low dose naltrexone and physiotherapy are key pain management options for me. Yours might be entirely different.

LIFESTYLE FOCUSED PAIN MANAGEMENT

  • Sleep
  • Gentle movement
  • Rest
  • Seeing food as fuel
  • Observing your work/life balance

SPECIFIC FOR PAIN – WHAT I DO:

Affiliate notice: Please note that some of my links are affiliate links, if you make a purchase using this link I may make a small commission at no extra cost to you.

  • Heat pack. This is my first line of defense, I use it on my neck first thing, whenever I can during the day, in the evening and at bedtime.
  • Essential oils – lavender is my all time favourite for sleep, pain and relaxation.
  • Deep Heat, a non-medicated heat producing rub that eases muscle pain, especially when combined with a good massage.
  • Biofreeze – a cooling pain reliever, especially good for during warmer weather.
  • A hot bath is my best treat and the first thing I want when the pain increases.
  • I see the physiotherapist every three weeks and they do neck tractions and place acupuncture needles in trigger points in my neck and shoulders. This is the only thing that keeps the neck free and keeps the severe headaches, dizziness and nausea that accompanies the severe neck pain away.
  • A Theracane trigger point massager for self-trigger point release. You can use your fingers, but mine get too sore for this now, you do have to push rather hard.
  • Magnesium oil on my back and shoulders at bedtime.
  • Low dose naltrexone. Over a period of 12 months, it has decreased my neck pain levels more than anything ever has. It is not a miracle drug – if I don’t take it, the fatigue skyrockets, and if I overdo it, my neck pain increases. It is not a standalone treatment. But I am super thankful for it!
  • It helps me get to sleep where nothing else has ever worked. I do have to combine it with a heap of sleep hygiene routines, but it’s the base of the plan. In addition to helping me sleep (and thereby, reducing pain), it reduced the wider spread pain and near constant headaches.
  • MSM (Methylsulfonylmethane) for muscle and joint pain. It helps with the pain in my index fingers as well as a little difference in my neck.
  • Slow release, high dose ibuprofen for period pain, for about four days – it’s pretty severe.
  • Ibuprofen or paracetamol (Acetaminophen) for headaches or low level pain that breaks through.
  • A muscle relaxant for spasms in the neck or back – the frequency of these has decreased since I began LDN.

OTHER PAIN RELIEF OPTIONS:

  • TENS machine
  • Foam roller
  • Essential oils
    • Lavender
    • Chamomile
    • Peppermint
  • Herbs
    • Thyme
    • Devil’s Claw
    • Jamaican Dogwood
    • Cayenne
    • White Willow Bark
    • Corydalis
  • Supplements
  • CBD oil

For medicinal pain relief, please discuss these options with your doctor and do your own research. Do always check for interactions between herbs/supplements and medicines that you are on.

LOW DOSE NALTREXONE

I haven’t been quiet about the benefits of low dose naltrexone (LDN). Since beginning it in 2017 I have experienced the best improvement of any single thing I have ever tried. I believe it is all down to sleeping better. The offshoots of this have been many. I have decreased pain levels, increased stamina, decreased fatigue, dramatically improved quality of life.

Find my Low Dose Naltrexone One Year Experiment post here. It includes a full write up of how it is changing my life with some links to further information.

For an overview of LDN see this website.


You might like:

Do you wish that you could have all of the parts of the Fibromyalgia Framework Series, along with the templates to help you plan with space for notes in one place? There is! The Fibromyalgia Framework Series Workbook is available here. Find it physically here.  Please note that some of my links are affiliate links and I may make a commission at no extra cost to you.

Request a session

 

fibromyalgia framework part five central sensitivity and how meditation can help

Fibromyalgia Framework Part Five: Central Sensitivity and How Meditation Can Help

Welcome to part five! I hope you’re enjoying this series! Did you catch the last one Sleep? It was pretty meaty and I hope very helpful.

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.

Fibromyalgia framework series part seven pain management for fibromyalgia and chronic pain

We have discussed:

The Fibromyalgia Framework
Diagnosis, Misdiagnosis and Fibro Books
Tracking Your Progress
Sleep

CENTRAL SENSITIVITY/OVERACTIVE NERVOUS SYSTEM IN FIBROMYALGIA

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)[1]. Other literature suggests that the chronic pain causes the central nervous system to go into overdrive. However you look at it, the nervous system appears to be involved.

The theory of autonomic nervous system dysfunction resonates with me as a big part of the puzzle – not the entire answer.

A lot of programmes are popping up and claiming to “cure” chronic pain (Lightning Process, Curable app, the CFS Unraveled programme, various books with similar programmes) based upon the idea of retraining the brain. If these programmes are the entire answer for someone, I am happy for them. But mostly they are going to be one part of the puzzle.

MEDITATION

Meditation promotes a calming of the central nervous system, allowing the parasympathetic nervous system to activate. In the short-term that meant achieving deep rest during meditation, in the longer term it meant a dramatic reduction of the misfiring of my fight or flight response to minor stimuli.

The benefits:

  • Complete rest
  • Calming the central nervous system (Martinez-Martinez et al, 2014[2])
  • A break from stimulus
  • Focus on the body, accepting it as it is (mindfulness).
  • Not trying to nap, which can be frustrating for those who can’t.
  • For those who have trouble with orthostatic intolerance, just lying down can make you feel better.
  • A boost in energy (however temporary).
  • Improve the immune system (University Health News Daily, 2018)
  • Treat depression
  • Reduce pain

MEDITATION OPTIONS

You can:

  • Simply focus on your breath for a few moments. How you breathe in, how the breath feels a little warmer on the way out. How your body feels when you exhale. How your breaths get a little longer as you relax. Don’t push anything, just observe.
  • Do your own body scan meditation – by quietly thinking of each part of your body in turn, noticing the feeling in each, accepting it, willing that part to relax and moving to the next.
  • Do progressive relaxation – by tensing and releasing each part of your body in turn you can encourage it to relax deeply. As an example you could start with your feet, tense and release, your lower legs, upper legs, glutes, abdomen, arms, face.
  • Guided meditations – YouTube has a heap available including Yoga Nidra, mindfulness meditations, meditation specific to pain or fatigue etc.

As an extra form of rest, you can lie down or recline in a chair with a heat pack.

Blue one way traffic sign

MINDFULNESS FOR FIBROMYALGIA

A working definition for mindfulness is to be observant of thoughts and feelings without judging them. To allow our body to be as it and accept it as it is.

A research paper (Cash et al 2016) found that mindfulness meditation “ameliorated some of the major symptoms of fibromyalgia and reduced subjective illness burden.” Other studies have also shown the effects to be sustained at three year follow ups, with consistent practice.

There are plenty of courses and books around learning mindfulness. One such book is by Vidyamala Birch, founder of Breathworks (a UK based organization that teaches mindfulness) and chronic pain warrior, You Are Not Your Pain: Using Mindfulness to Relieve Pain, Reduce Stress and Restore Wellbeing – an Eight Week Program. I enjoyed this book immensely.

The concept of mindfulness can follow you out of the practice of mediation and into daily life.

FURTHER READING

Books

  • You Are Not Your Pain: Using Mindfulness to Relieve Pain, Reduce Stress and Restore Wellbeing – an Eight Week Program by Vidyamala Birch and Danny Penman (2013)
  • Back in Control: A Surgeon’s Roadmap out of Chronic Pain by David Hanscom
  • Cure: A Journey into the Science of Mind over Body by Jo Merchant (2016)

Articles

Activities

  • Free writing for 5-15 minutes per day, then destroy the paper.
  • Deep breathing (minimum of five quiet breaths when you feel the need, up to 10 minutes of specific mindful breathing a day) this is a nice 3 minute
  • Write down your happiness level and social connection level each day, keep a gratitude list and remember your people.
  • Do a loving-kindness meditation each day like this one
  • Do a chronic pain relieving meditation like this one.

Special opportunity! I am passionate about incorporating mindfulness and meditation into coaching sessions- if you would like to find out more or grab a special session to learn to meditate see here.

[1] Dennis W. Dobritt, DO, DABPM, FIPP. Fibromyalgia – A Brief Overview (a presentation). Retrieved from https://www.michigan.gov/documents/mdch/fibroacpsm_246421_7.pdf

[2] L.A. Martínez-Martínez, T. Mora, A. Vargas, M. Fuentes-Iniestra, & M. Martínez-Lavín. (2014). Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/24662556


Impatient? Want to work through the content now? The Fibromyalgia Framework Workbook is available to purchase, with all of the templates (freebies and templates recommended from my Etsy Store) with space for notes to work through the content as a course. Find the Fibromyalgia Framework here (digital). Find it physically here

Sleep, sleep tips, hygiene and tips to help you sleep with fibromyalgia

Fibromyalgia Framework Series Four – Sleep: Sleep research, sleep hygiene, sleep tips

Welcome to part four of the Fibromyalgia Framework Series! I hope you’re enjoying this series and have come to join the conversation in Melissa (You) vs Fibromyalgia Facebook group.

The fibromyalgia framework series has been presenting 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.

We have discussed: 

The Fibromyalgia Framework – with your free framework template!
Diagnosis, Misdiagnosis and Fibro Books
Tracking Your Progress

Sleep, sleep tips, hygiene and tips to help you sleep with fibromyalgia

SLEEP WITH FIBROMYALGIA

Sleep is huge. I had theorized that sleep was a crucial missing component in my healing journey for a long time. Research is starting to bear this out. Doctors specializing in and writing about fibromyalgia know it. It still hasn’t trickled down to most practitioners.

Once I began low dose naltrexone I started to sleep in more than one hour blocks. Getting restful sleep has been the basis of all the improvements I experienced over 2017 and 2018 despite having tiny children and a third pregnancy.

SLEEP RESEARCH

There’s a lot of research about the sleep issue in Fibromyalgia and chronic deep sleep deprivation is no friend to our pain, fatigue or brain. We can do quite a few things ourselves to impact our sleep, but sometimes we need a doctor to step in and help. I am very lucky that a locum GP I saw once noticed my history of being very tired and not sleeping well and put me on amitriptyline. This was before I was diagnosed so I’m unsure if he suspected Fibromyalgia or not. This was the only way I could get any sleep for years. That doesn’t mean it helps me to sleep well or that I don’t have a list of sleep hygiene rules that I live by.

Based upon my reading of the research, books by my favourite fibromyalgia authors and my experience, my number one recommendation to anyone suffering from chronic pain or similar illnesses is to get your sleep.

SOME SLEEP HYGIENE TIPS

alarm-alarm-clock-analog-1162967 attribution fre

Go to bed and get up around the same time each day.

  • Manage pain – take prescribed medicines as directed.
  • Pacing during the day so you are not over-exhausted.
  • Don’t have caffeine after lunch.
  • Have a wind-down routine (that doesn’t involve technology).
  • Go to bed and get up at approximately the same time each day.
  • Dab lavender oil on temples, wrists and/or feet.
  • Do a body scan meditation.

EXTRA SLEEP HELP

Once you have tried the above sleep hygiene tips, it might be worth exploring natural sleep options such as:

  • Lavender essential oil
  • Chamomile
  • Valerian
  • Lemonbalm
  • GABA supplement
  • CBD oil (if it is legal where you live)
  • Magnesium

If you have been struggling to sleep for a good while, have tried all of the sleep hygiene and natural options available it is time to discuss options with your doctor.

  • Melatonin
  • 5 HTP
  • Low dose naltrexone – do your research, take it to your doctor, but please note that for some it causes insomnia.
  • Stronger sleep aids for short term use, under strict medical supervision.

This article from Dr Teitelbaum might be of use for further sleep help.

Sleep is one area where we really need our doctors to be on board. If yours is not, then try to find another one.

My sleep logs and sleep hygiene tips

You can purchase your Sleep Hygiene Tips sheet, My Sleep Hygiene Plan and My Sleep Diary templates from my Etsy store to help you get started today on improving your sleep.

Please note that some of my links are affiliate links and I may make a commission at no extra cost to you.

Request a session

Fibromyalgia Framework Series Part Three Tracking Your Progress Fighting Fibromyalgia

Fibromyalgia Framework Series Part Three – Tracking Your Progress Fighting Fibromyalgia

Welcome to part three 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.

Fibromyalgia Framework Series Part Three Tracking Your Progress Fighting Fibromyalgia

In this series we will address the components of my framework including diagnosis and misdiagnosis, tracking your progress, sleep, basic human needs, pain management, the central nervous system and fatigue.

Did you grab your free Fibromyalgia Framework Puzzle and Grid templates in the first part of  The Fibromyalgia Framework?

TRACKING YOUR PROGRESS FIGHTING FIBROMYALGIA

As you may have noticed, I firmly believe we have the power to impact our quality of life. Our daily choices make a big impact on our wellbeing. Only we know our bodies so intimately. So we need to take charge in order to help our doctors to help us.

Fibromyalgia is complex and unique, so good record keeping is an important step in managing the myriad of symptoms and potential treatments.

By tracking our symptoms and things that we have tried we can notice patterns and make informed choices. Relying on fogged brains is not the easiest way to go. I have tried a great many things that I cannot remember! By keeping track you have created useful data to discuss with your doctor at appointments, it can help you see clearly what you need to discuss first and to give feedback for any changes they have previously suggested.

You can track notes in a journal, make a bullet journal, find an app or try a template.

It is good to keep track of:

  • Your sleep quality and quantity
  • Key symptoms and severity
  • Any medicines or supplements you are taking, and
  • Any self-care and exercise you manage.

I personally love printed templates to physically write on and have created several options that are available in my Etsy Store. Below are a couple of them. The one on the right includes the option to write down the top five things you are thankful for each day, which I find is a nice way to add some mindfulness to our day. Some days it might only be that you are still breathing. Others you will have trouble limiting it to five. The one on the left is gives the option of two to a page or a full page tracker.

My daily health log blueMy spoonie daily log

You don’t need to be tracking all of the time, but it is especially useful for identifying patterns periodically and for tracking experiments. It is important to know if things work. Especially over the course of this series!


Impatient? Want to work through the content now? The Fibromyalgia Framework Workbook is available to purchase, with all of the templates (freebies and templates recommended from my Etsy Store) with space for notes to work through the content as a course. Find the Fibromyalgia Framework here (digital). Find it physically here.

Please note that some of my links are affiliate links and I may make a commission at no extra cost to you.

Request a session

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/


My newsletter subscribers are receiving this series first along with exclusive freebies that I have created to go with it. Sign up here to be one of the first to receive the next part! You will also receive access to other free templates and articles for fighting fibromyalgia.

Impatient? Want to work through the content now? The Fibromyalgia Framework Workbook is available to purchase, with all of the templates (freebies and templates recommended from my Etsy Store) with space for notes to work through the content as a course. Find the Fibromyalgia Framework here (digital). Find it physically here.

Please note that some of my links are affiliate links and I may make a commission at no extra cost to you.

Request a session

January update for Melissa vs Fibromyalgia

Melissa vs Fibromyalgia January Update

In this January update, I share how the first 11 weeks with baby have gone. Discuss helping baby to sleep. My pain levels. The Fibromyalgia Framework and the future of Melissa vs Fibromyalgia.

 

Links I discuss:

Newsletter list for the rest of the Fibromyalgia Framework series

Fibro Framework physical book (affiliate)

Melissa vs Fibromyalgia Facebook group – come and discuss our fight against fibromyalgia.

Melissa vs Fibromyalgia book (affiliate)

Pregnancy and Fibromyalgia Facebook group –  come and chat pregnancy, parenting and fibromyalgia.

Pregnancy and Fibromyalgia book (affiliate)

January update for Melissa vs Fibromyalgia

My growing list of fibromyalgia treatments

fibromyalgia framework series: the fibromyalgia framework, introduction to fibromyalgia, tracking progress, sleep, central sensitivity, pain management, fatigue, normal human needs

The Fibromyalgia Framework Series

Welcome to the introduction to my 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.

fibromyalgia framework series: the fibromyalgia framework, introduction to fibromyalgia, tracking progress, sleep, central sensitivity, pain management, fatigue, normal human needs

In this first part I will show you my Fibromyalgia Framework, which will likely look different to yours on account of the unique nature of this illness and where we are on our journey.

My mission is to help you cut your journey down, I lost too much of my life to chronic pain, fatigue and insomnia, so I share what works for me in case it helps you.

In this series we will address the components of my framework including diagnosis and misdiagnosis, tracking your progress, sleep, basic human needs, pain management, the central nervous system and fatigue.

My Fibromyalgia Framework 

My fibromyalgia puzzle pieces: meditation, sleep, physiotherapy, lifestyle changes, gentle exercise, additional health issues, medicine, deal with trauma

Fibromyalgia is a complex illness with no known cure or cause. The way it manifests, how it is triggered and how we find relief differ from person to person.

Here are my key components that I’ve found crucial to my wellness journey. I created this after several years of intense experimentation and research and after decades living with the symptoms.

Your Fibromyalgia Framework

Grab your free Fibromyalgia Framework puzzle and grid and start populating what you think are your key puzzle pieces. You may be early in your journey and have only one or two things, or you may be further along, like me, and have the whole thing filled out. This doesn’t mean you have it sorted, it just means you have more direction.

Once you have filled in some puzzle pieces, you can begin to research those areas and make some goals to tackle them!

Action: I’d love to see your components, feel free to come and join Melissa vs Fibromyalgia Facebook group and share what you think fits in your puzzle.

Further reading that may help:

22 Ways to Increase Your Energy
My Top Three Treatments to Fight Fibromyalgia
Why I’m Treating the Fibromyalgia as Naturally as Possible – Natural Remedies for Fibromyalgia


fibromyalgia framework

Impatient? Want to work through the content now? The Fibromyalgia Framework Workbook is available to purchase, with all of the templates (freebies and templates recommended from my Etsy Store) with space for notes to work through the content as a course. Find the Fibromyalgia Framework here (digital). Find it physically here.