The serious, undertreated problem that millions of people are fighting alone

The Case for Taking Insomnia in Fibromyalgia More Seriously

Insomnia is a serious and often ignored problem, especially for people with chronic conditions like fibromyalgia.

I would like to suggest that we need to take this more seriously.

This is a long post. You may want to grab a cuppa and get comfortable! If you have fibromyalgia and brain fog is an issue, there is a handy (free) PDF document below for you to download!

The serious, undertreated problem that millions of people are fighting alone

Key facts about insomnia and fibromyalgia

  • Insomnia is a key problem for people with fibromyalgia and many other chronic illnesses
  • Insomnia is debilitating and makes other already incapacitating symptoms worse
  • Insomnia is a recipe for a shorter, less fulfilled life
  • Insomnia causes pain – even for those without chronic pain conditions
  • Insomnia costs money – in health care costs from those who suffer the side effects, in absenteeism from inability to work, in lost income, if you could place a value on a fully functioning human being able to participate fully in life then multiply that by the 10 million people estimated in the US alone (and 3-6% of the world’s population) it would be a massive number.
  • Sleep helps pretty much every symptom of fibromyalgia
  • Sleep improves our quality of life and our emotional state
  • We can improve sleep! It might be multi factorial and a doctor needs to help in many cases, but we can improve sleep.

Shall we take a look into the literature that supports my statements?

Does insomnia lead to death?

Laboratory animals subjected to extreme sleep deprivation can die relatively swiftly of unknown causes — exactly what goes wrong is not clear, but their body temperatures start to drop and then they suffer rapid and widespread physiological failure. [1]

Does insomnia cause pain?

“According to the majority of the studies, sleep deprivation produces hyperalgesic changes.”[2] (That means yes!)

What side effects does insomnia cause? A summary based upon all of the research I have ever done and experienced after more than a decade living with it:

  • Fatigue
  • Pain
  • Headaches
  • Attention problems
  • Anxiety and/or depression

Sleep as a treatment for pain

“More broadly, our findings highlight sleep as a novel therapeutic target for pain management within and outside the clinic, including circumstances where sleep is frequently short yet pain is abundant (e.g. the hospital setting).”[3]

Why is sleep a novel (or innovative) treatment for pain??

So we have found that research supports insomnia as life threatening, costing money, leading to pain (and sleep is a treatment for pain) what is the insomnia problem specifically relating to fibromyalgia?

What is insomnia, exactly?

  • Trouble falling asleep
  • Difficulty staying asleep
  • Waking too early
  • Not achieving good quality sleep
  • Waking unrefreshed

What’s happening for people with fibromyalgia and sleep?

Dr Ginevra Liptan, MD, writes about sleep in her book The Fibro Manual (2016):

Sleep studies show that Fibromyalgia subjects show abnormal ‘awake-type’ brain waves all night long, with reduced and interrupted deep sleep and frequent ‘mini-awakenings’ (Brandi 1994; Kooh 2003). This deep-sleep deprivation leads to pain, fatigue, and poor brain function (Lerma 2011; Moldofsky 2008; Harding 1998). Treatment focused on increasing deep sleep is the key to improving all these symptoms.

In plain terms, people with Fibromyalgia don’t tend to reach stage four of the sleep cycle (the deep, restorative stage), and therefore, they suffer from chronic, deep sleep deprivation, which causes all sorts of issues with the body: pain, fatigue, fog, anxiety, etc.

Insomnia—along with poor sleep in general—is believed to make fibromyalgia symptoms more severe, which means treating your sleep problems may have the secondary effect of improving painfibro fog, and more.[4]

Let’s just repeat that – treating sleep should help with pain, fatigue and fibro fog.

How have I experienced insomnia?

Every single night for more than a decade (including my entire twenties), despite researching and using a lot of sleep hygiene tips and natural sleep aids, having trouble falling asleep, not staying asleep for more than one hour at a time, spending time awake in the night too exhausted to get up but too sore to remain lying still and waking feeling more tired than I went to bed.

This was while on the only option the doctor every offered me – amitriptyline.

Finally in 2017 I began taking low dose naltrexone and it helped me to start sleeping in blocks of up to a few hours. This made such a difference on my quality of life. But I still struggle with insomnia every single day.

I can’t imagine how much more I could achieve if I could sleep well. Or what it might have been like if my doctors had been willing to work with me to help me achieve more sleep. Even utilizing low doses of medicines for a short amount of time to achieve some rest, like two prominent physicians who have fibromyalgia and treat patients with it suggest (Dr Teitelbaum From Fatigued to Fantastic and Dr Liptan The Fibro Manual – thank you so much to these two doctors who have done so much for our community).

I was miserable and missed out on the usual things one does in their twenties. I couldn’t do my OE, I could hardly make it through the day let alone travel long distances.

Now, with the amount of sleep I’ve been able to reclaim I am managing day to day, but I still experience severe costs. I cannot stay up late, it is difficult to manage my children myself, I cannot work and when I do work I can only manage part-time work (so a cost of 30,000-80,000 per year lost there). Add the costs of things I need to manage such as the low dose naltrexone prescription, doctors’ visits, supplements, physiotherapy, and the many, many things I have tried to help myself. Add in the impact on my quality of life of dealing with chronic pain all day every day. I don’t know what a pain free day might look like!

And there are people who are worse off than me.

What do other people with fibromyalgia and insomnia say?

“Fibromyalgia insomnia is a very real issue for me. I am currently breastfeeding a six month old. She wakes for one feed a night and resettles quickly back to sleep. It then takes me two to three hours to get myself back to sleep. I am exhausted. I have not had a good night sleep in years.” – Amanda

“Where do I start? It’s a vicious cycle in so many ways. If it’s not the pain keeping me up, it’s restless leg syndrome or another of the plethora of symptoms and comorbid disorders that come with fibro. Otherwise, it’s pure anxiety from having night terrors brought on by my medication and the trauma that landed me with fibro in the first instance. The more I get into a terrible sleeping pattern, the worse my pain and other symptoms get, the worse my mental health gets, the worse my relationships get because I just cannot function or am not physically able or awake to conduct a “normal” life. And of course all of these things contribute to not being able to sleep or sleep well. Which perpetuates the issue.

While I was at uni my insomnia was seriously affecting my studies but I got flat out told by several doctors that they refused all students sleeping meds because they were so highly abused. I cried in Drs appointments, I cried as I lay awake at night in pain, I cried when I was forced to ask for extensions on my coursework, I cried when I got sub-standard grades because I knew it wasn’t a reflection on my ability but my circumstance. It’s such an underestimated burden that so many are forced to “put up with” because “everyone’s stressed” or “everyone’s tired” for one reason or another. I wish it was taken as seriously as my pain, which has had all manner of meds thrown at it. I’m sure it hurts me just as much.” – Rebekah

So for them, and for me, I want to beg doctors to take the sleep problem much more seriously. I want to beg researchers to look into how we can fix this (ideally without long term drug use).

Taking Insomnia in Fibromyalgia More Seriously

If you are suffering from insomnia and fibromyalgia what can you do?

  • Learn (I have a Sleep and Fibromyalgia 101 micro course, and offer coaching to help you work through your sleep plan and the other key areas to fight fibromyalgia)
  • Experiment
  • Beg for help – show your doctor you have tried all the things and hope for help!

References

[1] Insomnia Until it Hurts, The role of sleep deprivation in chronic pain, especially muscle pain, Paul Ingraham, updated Mar 5, 2019 https://www.painscience.com/articles/insomnia-until-it-hurts.php

[2] Kundermann B, Krieg JC, Schreiber W, Lautenbacher S. The effect of sleep deprivation on pain. Pain Res Manag. 2004;9(1):25–32

[3] Krause AJ, Prather AA, Wager TD, Lindquist MA, Walker MP. The pain of sleep loss: A brain characterization in humans. J Neurosci. 2019 Jan. PubMed #30692228. ❐

[4] Coping With Insomnia and Fibromyalgia Common Bedfellows  By Adrienne Dellwo  | Medically reviewed by a board-certified physician Updated July 26, 2018 https://www.verywellhealth.com/insomnia-fibromyalgia-716169

I’d love to hear your experience below. Comment how insomnia has affected you, have you found anyone to help you with it? What helps you sleep?

Now that you have read this information what can you do?

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The case for taking the sleep problem in fibromyalgia very seriously

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How I went from miserable to thriving the full fibromyalgia origin story

My Fibromyalgia Origin Story

I finally sat down to tell you about my fibromyalgia origin story. Usually I focus on the positive and where my story improved from. There is a chapter in my book explaining the progression of the illness, but in this video I share how the illness progressed, how I finally got diagnosed, how I changed my life little by little and why I do what I do.

I also introduce my next phase – in my recent update I discussed being unsure as to what happens next with my blog. I am moving to supporting people one-on-one so that I can make a bigger impact with all that I have learnt. See my work with me page for more detail and stay tuned as I fine tune this.

Contents of the video:

Progression of the illness 0:33 seconds

When it got better 5:40

What I am doing next with my work 10:00

How I went from miserable to thriving the full fibromyalgia origin story

Links mentioned:

Melissa vs Fibromyalgia Facebook group – do come and join and chat with us about your fight.

Melissa vs Fibromyalgia book (affiliate)

Fibro Framework Workbook (affiliate)

Pregnancy and Fibromyalgia Facebook group – come and chat trying to conceive, pregnancy and early parenting with fibromyalgia.

Pregnancy and Fibromyalgia book (affiliate)

Would you like to learn what I wish someone could have taught me when I was at the beginning of my journey? Pain relief options you can enact right now, help to improve sleep and two practices to help calm body and mind (and when practiced regularly help with sleep, pain and fatigue). Grab your spot now, I’d love.to help you! Enrollments close soon.

Kickstart your fight against fibromyalgia group

 

 

Kickstart Your Fight Against Fibromyalgia group programmes begin 1 May 2019

Fighting Fibromyalgia and Sharing the Knowledge

You may recall a few weeks ago I shared about what a coach is and why I became one. I shared about how my mission is to help other people improve their quality of life and thrive despite fibromyalgia.

Today I want to share with you my programmes – Kickstart Your Fight Against Fibromyalgia.

I want to also ask you a favour – if you know someone who is struggling with fibromyalgia could you please share this with them? I so wish these programmes existed when I was struggling to put one foot in front of the other as a 20-something person with nothing more than my heat pack and pain killers that hurt my tummy and didn’t help much. I definitely had no one who understood. I created these programmes while remembering what I would have wished for, if I knew what to wish for!

Kickstart Your Fight Against Fibromyalgia group programmes begin 1 May 2019

Kickstart Your Fight Against Fibromyalgia 1-1 Sessions

This is the traditional coaching model where we sit down one-on-one and you set the agenda, we make goals and work on them. An hour at a time to discuss where you are at, your goals, what you are trying and would like to try and fine tune your plans with someone who has been where you are and gets it.

Kickstart your fight against fibromyalgia one on on sessions

Kickstart Your Fight Against Fibromyalgia Hybrid Programme

If you would like group calls and a one-on-one session also – we can dig into your goals and get some personalised help. This is the intermediate layer where we assume you have tried some things already and are ready to learn more and try more. Running 1 May. Limited enrollments. This is the programme I wished existed after I had made my dramatic lifestyle change and had some space to start trying things and researching.

Kickstart your fight against fibromyalgia intermediate

Kickstart Your Fight Against Fibromyalgia Group Programme

This is the most time, energy and cost efficient option. This is the beginning layer where we discuss things you can do right now to help manage your symptoms. Running 1 May. Limited enrollments. This is the programme I wish existed when I was right at the beginning, when I was trying so hard to work full time and going home unable to even read because I was too exhausted and sore.

Kickstart your fight against fibromyalgia group

Drop me an email at hello@melissavsfibromyalgia.com. Or Schedule your complimentary chat if you would like to ask any questions, let me know your goals and be sure that these programmes might be a good fit for you.

To get an idea of how I work you can:

I am looking forward to starting the group programmes on May 1!

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

 

health update four months postpartum with fibromyalgia

Health Update 4 Months Postpartum with Baby #3 and Fibromyalgia

I haven’t given you a proper health update for a long while. I kept you updated about the pregnancy and have given a full rundown on my low dose naltrexone experiment. But nothing about my general health recently.

Being consumed with children and nursing and surviving has impacted my health, but not as badly as I feared it would. I had a bad flare after Noah, pretty much his entire first year was a flare. With Wyatt I did better thanks to starting low dose naltrexone (LDN). But this time I am fully established on LDN, and the difference is huge.

Parenting with fibromyalgia: How I am doing four months postpartum with baby #3

Pain

Average pain levels are sitting at 4/10 for my neck and shoulders. These trigger points are irritated by carrying my 7kg baby and lying on my side to feed him in the night. I have had several bad headaches and one so bad I had to go to bed for an entire morning. I am not taking pain medicines regularly, only paracetamol/acetaminophen during the worst headaches (I take the water soluble one as I cannot swallow pills when the headaches are bad and cause nausea so paracetamol is the only option at these times). My pelvis, glutes and legs are getting very sore at the end of days that I have had to carry the baby more and nights where I have had to lie on my side with baby for a long time. I have a feeling that this is due to active trigger points from labour. But generally, day to day, I am doing much better. I am using my heat pack, topical, un-medicated creams and hot showers daily.

Talking about trigger points – I have put more effort into researching and treating them. I have been using my Targeted Symptom Plan template (part of this kit in my Etsy store) to work on these.

Fatigue

Living on 6-7 broken hours of sleep is difficult for anyone and I am so thankful at how well I am coping. A 20 minute meditation makes all the difference on the days when I can. I cannot wait for baby to consistently sleep in four hour stretches!

New things to try

A person in a group I am in on Facebook suggested a brand of magnesium to try called Magnesium L-Threonate (please note this is an affiliate link and I may make a commission at no extra cost to you). Apparently it crosses the blood-brain barrier effectively. You might like to research this.

Baby product that has been saving my life

I have been so grateful for my baby wrap (affiliate). The day that I first put it on the baby stopped an hours long fussing spree! This holds baby closer to your body which reduces the strain on your back and shoulders. It also sits around your waist, not near your pelvis, this relieved the pressure that the normal front pack placed on it. At first I had to use it for all naps. Then just for naps that he woke up early from (read: all) and needed extra sleep time to be less fussy. I also use it when I am taking the four year old into kindy with the two year old and baby. I prefer my Beco Gemini front pack (affiliate) for this as it is much faster to put on, but it was stolen with our car a couple of weeks ago.

Stress

Speaking of cars. First, I was rear ended while driving one car with the baby in it. That car has been written off (in a very slow process) so we are hunting for the ideal replacement. Then the second car was stolen (with my baby carrier and three car seats in!). Very stressful. On the day of the accident I had to practice careful breathing and some relaxation techniques. I dealt with it much better than I would have several years ago. But it hasn’t been much fun navigating all this.

What’s next?

I am studying a life coaching course on Udemy to support my mission here on the blog. Do come along and join my Facebook group if you want access to super special discounts while I am setting up this service. I am trying to get baby to begin taking a bottle so I can catch a break one day. I am also considering how and when to get back to work with three tiny children – one of whom seems destined to be breastfed forever!

How are you doing?

You might also like these articles:

Baby Wearing with Fibromyalgia

Healthy Practices I’m Doing with Three Tiny Ones and a Chronic Illness

Tips for Coping with a Newborn and Fibromyalgia (Chronic Pain and Chronic Fatigue)

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

Your simplest mindfulness practice FB.png

tips for coping with a newborn and fibromyalgia, chronic pain and fatigue

Tips for Coping with a Newborn and Fibromyalgia (Chronic Pain and Chronic Fatigue)

Having done this three times, I have formulated some tips for coping with a newborn and fibromyalgia. They are split into the key areas for dealing with fibromyalgia in general – sleep, general health, pain management and expectations.

How to survive with a newborn and chronic illness

Sleep is king

  • Give baby to your partner/support person with a bottle (formula or expressed breast milk) and go to bed early. With our first I expressed at 8.30pm and went to bed at 9pm. Husband would hold sleeping baby, feed him when he woke, wind him and bring him into the room. Those precious hours of sleep made a huge difference, especially as I flared the worst with him. Unfortunately we haven’t managed this with our second (reflux and colic, we had to keep each other company in the storm) and third (I’m breastfeeding and he refuses the bottle) and I so wish for those three or four hours of sleep!
  • Find a person each day to visit and hold baby while you nap. Unless you are lucky enough to have a baby that naps in their own bed for more than 20 minutes at a time, I never got one of those!
  • If you don’t have a visitor to hold baby and baby isn’t napping in their bed for you, lie down while holding baby (meditate, pray, read, watch television -just don’t move) -they will probably sleep better and you can rest.
  • Help baby sleep. With all three babies I fell into the trap of doing all the things and just made it harder to fall asleep.With our first we waited five overtired months to sleep train and after much trial and error we found he needed a good 15 minutes alone to decompress before he slept 7-7 with a 10pm dream feed (anything we did just prolonged it and made it super difficult for him to sleep).

    With number two at 22 months (the reflux made us nervous to sleep train) we started ignoring him in the night, he would grizzle for 10 minutes, go back to sleep and wake in the morning so much more refreshed than us going in and out all night.

    With number three I was standing, jiggling, patting and shhing and it took ages to get him off. Then I noticed my husband would sit on the couch, jiggle him a little, baby would cry for a few minutes and then go off to sleep! If I catch him before he’s overtired, ensure he is well winded, swaddle him, sing his songs and put him down awake he will go to sleep himself with literally a minute of grizzling. I haven’t figured out how to get him to do longer than 20 minutes of sleep but it is much nicer for both of us. We are setting the foundations for later sleep. Sleep is important for mama and baby.

Physical health

  • Drink lots of water
  • Eat healthily and regularly
  • Take a multivitamin
  • Check your iron levels and address low levels
  • Stretch
  • Massage yourself with lavender oil regularly
  • Take a hot shower or bath every day
  • Get into the sun for at least five minutes
  • Go for a gentle walk, even if it’s five minutes in your garden or down your street

Pain relief

  • Do all of the above
  • Enact your natural pain relief mechanisms from pregnancy
  • Discuss medicines for breastfeeding (if you choose to/are able to nurse) before baby comes (and there are medicines that are alright for nursing – see this article).

Other

  • Aim for one or two tasks a day outside baby that are crucial and let the rest slide (ie dishes and washing).
  • Keep in touch with your family and friends, even if only by text.
  • If something doesn’t seem right, ask for help (excessive wind etc).
  • Know that the newborn that takes two hour naps every 45 minutes and sleeps from 7-7 with two or three feeds is NOT the norm.
  • Enjoy that baby and take lots of pictures, they will grow and this stage will pass.

I’d love to hear your tips?
If you are a new mama with fibromyalgia do come and join Pregnancy and fibromyalgia Facebook group.

More articles for you:

Baby Wearing with Fibromyalgia

Healthy Practices I’m Doing with Three Tiny Ones and a Chronic Illness

Nursing with Fibromyalgia: My Experience and Some Research

You vs Fibromyalgia eCourse my research your plans to fight chronic pain chronic fatigue and insomnia

You vs Fibromyalgia Equipping You to Fight

I am super excited to announce that I am running You vs Fibromyalgia: Helping You Fight Chronic Pain, Chronic Fatigue and Insomnia full eCourse!

 

You vs Fibromyalgia eCourse my research your plans to fight chronic pain chronic fatigue and insomnia

While my micro course You vs Fibromyalgia: Arm Yourself with Knowledge is a free introduction to some of the modules in the full course, it isn’t exhaustive. This course has a lot more information, so if you’re ready to dive in for more and create your own pain management plans, trial some sleep tips, learn about low dose naltrexone for fibromyalgia and more – then come and join us!

If you learn only one thing from anything I ever write, I hope it is that you can impact your quality of life. I have made a huge difference to my quality of life through research and personal trial and error. But it took a lot of time. I want to save you that time.

See below for my brief introduction video about You vs Fibromyalgia

I have just enough time to run this course before baby comes in November, so it won’t be offered again until next year.

The stats of the course aka what you get

  • Seven modules with
  • Short video lessons
  • Templates to make your own pain management plans, a sleep diary, a list for keeping track of the things you’d like to try and a form for working out how you could create some space and make the most of your life despite fibromyalgia
    information sheets
  • The workbook – with all of the lessons, information sheets, templates, heaps of extra reading with space for notes!

Between this course and my book Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia (affiliate link) and my free resources pages – I am content that I have shared everything I can to help you not suffer as long as I had to. Obviously I am not a doctor and there are often more issues than just the fibromyalgia at play. A doctor and medicine definitely have their place in treatment, but I want to also share all of the things you can do yourself – today – to fight the fibromyalgia.

Yes, I am just as ecstatic to join the journey!

The Pain Companion book review by Melissa vs Fibromyalgia

The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain by Sarah Anne Shockley

Recently I was lucky enough to be given a chance to read and review Sarah Anne Shockley’s book The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain.

I was given a copy of this book in exchange for my honest review.

Please note that some of my links may be affiliate links, if you make a purchase using one of these links I may make a small commission at no extra cost to you.

Synopsis of The Pain Companion

The Pain Companion cover image

In the twenty-first century, one might wish that pain were an easily treatable nonissue. It is not. Millions of doctor and emergency room visits stem from pain, and addiction to pain medications, rampant in the United States, often takes root in an attempt to manage unremitting discomfort. 

In The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain (New World Library, June 12, 2018), author Sarah Anne Shockley, who has personally lived with chronic pain since 2007, offers fellow pain sufferers a compassionate and supportive guide for living with pain that can be used alongside their ongoing medical or therapeutic healing programs

“I cannot know your personal suffering, of course; only you can,” writes Sarah. “But I do understand the experience of being in significant and relentless pain for long periods of time, and I understand the fear, sadness, and frustration associated with long-term physical debilitation. So I can say that this book has been written from inside of pain, a perspective on the experience and the healing of pain that we are seldom offered.”

Further reading you might like:

For more about meditation and Fibromyalgia see my post about it here.

My Review of The Pain Companion

In this sensitive, beautiful book Sarah Anne Shockley explores what it means to live with chronic pain and how she manages it using meditative approaches.

The book is divided into parts: The pain moves in, the emotional life of chronic pain, meditative approaches to physical pain and when pain is a teacher.

Shockley defines chronic pain early in the book: “Chronic pain is a very complex condition involving much more than just the physical symptoms of the body. It includes emotional and psychological aspects as well, due to the incredible stresses of living with pain on a daily basis, and the ramifications of basically losing one’s life to pain.” P18

The Pain Companion book review by Melissa vs FibromyalgiaAnd she hits the nail on the head. The emotional and psychological aspects are just as important to address as the physiological ones.

Shockley explains how she came to understand this and how it ultimately helped her cope with the pain: “This practice of extending understanding and compassion to myself was more than just a psychological wellness exercise. It was a crucial interior movement that created space for real healing and unexpectedly began to relieve my physical pain as well.” P22

In part three Shockley talks of meditative approaches and not fighting the body and the pain so hard (extending understanding and compassion to herself and the pain). She explains how she began to listen to the pain, to see what it was trying to tell her. And in doing so she reduced the intensity.

We need to ask ourselves: What is this pain trying to tell us? What is its origin?

We are given 12 meditative exercises to work through starting with the breath. Now I have been a meditator for several years now but I still find visualisation and the idea of talking to my pain difficult. However, there are many exercises here that are excellent gateway approaches, especially the noticing the breath and learning to relax this way.

Usually I devour books, but this one I savoured. I read it in sections and really absorbed what she was saying. This is not a guidepost for curing chronic pain, or even how to overcome it, but more about how one woman managed to coexist with it in a way that ultimately reduced her suffering.

If you want to see an interview with the author about this book, see here.

You can get your copy of The Pain Companion here.


For more information:

Come and join my free You vs Fibromyalgia micro course.

pain relief in pregnancy with fibromyalgia

Pain Relief in Pregnancy with Fibromyalgia

Pain relief is a big issue for those who live with chronic pain. It becomes an even bigger issue during pregnancy. For those of us whose symptoms worsen during pregnancy, it’s a minefield.

Author’s Note: This article appeared first on The Mighty

pain relief in pregnancy with fibromyalgia

My fifth tip for pregnancy with Fibromyalgia is to get a pain management plan in place – preferably prior to becoming pregnant.

There are some medicines that are categorically unsafe for pregnancy. There are a lot of medicines that they just don’t know enough about, performing experiments on pregnant women, particularly involving something that may harm a baby, would be unethical. So literature relies on data provided by pregnant women. This website Mother to Baby  provides fact sheets, access to professionals about medicine in pregnancy and more.

The first thing to do when considering pregnancy with a chronic pain-based illness would be to discuss plans for pregnancy with your doctor. With my first pregnancy, we didn’t talk to the doctor before conceiving, and then when we were discussing the only medicine I was on (amitriptyline) I nearly had a panic attack at the thought of going off it. My doctor called a specialist and they agreed that the benefits outweighed the potential risks – for me and my unique situation.

Sleep is a big battle for me, I enact a long list of sleep hygiene tactics every day; take a low dose of amitriptyline at 8pm, take a low dose of naltrexone (I only started this after I had my second baby, prior to this I would take pain medicine at this time) at 9pm, get into bed with my heat pack, do a body scan meditation, and if I’m lucky, fall asleep for a few hours at a time. A good night sees me fall asleep relatively quickly and only lose an hour to awake or restless times. It would appear that the second the pregnancy hormones enter my body, sleep runs away screaming. Pain also becomes a much bigger issue when I have to lie on my side (as you must once baby gets big enough to put pressure on an important vein when lying on your back).

More articles about pregnancy with Fibromyalgia

Pregnancy with Fibromyalgia The First Trimester Diaries
Necessary Baby Items for a Fibro Parent
Fibro Mama Pregnancy Diaries: The Delivery
Pumping or Expressing for Your Baby: Parenting (Fibromyalgia or Not)

You do not have to be miserable, there’s also research that suggests that under treated pregnancy and fibromyalgia def ed anglepain can negatively affect the pregnancy.[1] So if your doctor refuses to help you with pain relief, get a second opinion. Do some research for yourself and present it to them. I provide what I did during pregnancy to be as well as possible in my book Pregnancy and Fibromyalgia.

Here are a few natural pain relief mechanisms that I enacted during my pregnancies:

·         Heat pack
·         Warm shower or bath
·         Essential oils such as lavender and peppermint (for external use only and with a carrier oil after the first trimester) – see my Resources page for my free report about Essential Oils for managing pain
·         Magnesium oil (I never got a calf cramp in my second pregnancy using this)
·         Gentle walks and stretching
·         Meditation – especially ones specifically for pain relief on pregnancy, there’s heaps on YouTube to search up
·         Massage – either for yourself, or from a partner, friend, or therapist
·         Rest and sleep as much as you can
·         Belly support belt – I had symphysis pubis disorder (my pelvis basically widened too far) and this really helped.

If you want to learn even more information about pain relief during pregnancy, then Pain Managementmicro coursecheck out my 15-page printable PDF Pregnancy with Fibromyalgia Micro Course Workbook. It goes through the existing information about pain relief during pregnancy, my experiences, a list of natural pain relief options, a list of further reading, a template to make your own pain relief plan (pregnancy edition) with space for notes and the brand new Advanced Pain Relief sheet with links to research about medicine use in pregnancy. I have gathered the information and created these printables to make it easier for you to make the best decisions for yourself- it took me years to get it all together.

I always recommend remembering that pregnancy is finite, there is an end date and a beautiful baby as the pay off. I also was a bit smug in my second pregnancy because I knew that I am one of those very rare women who actually sleep better with a newborn baby than pregnant, the pain levels are just so high that sleep is almost non-existent in the final trimester. Last year, once I delivered my second baby, my bed that had previously felt as hard as a rock seemed luxuriously soft. So in those one, two or three hours that the baby was asleep – I slept like the dead, which is a very rare occurrence for me.

I really hope that this post helps you on your way to relieving some of the pain involved in pregnancy with a chronic illness.
[1] Malaika Babb, PharmD, Gideon Koren, MD FRCPC FACMT, and Adrienne Einarson, RN. Treating pain during pregnancy. Can Fam Physician. 2010 Jan; 56(1): 25, 27. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2809170/


For more information about pregnancy and Fibromyalgia:

This article is also available as a free PDF printable in my free Resources page.

Pregnancy andFibromyalgia_resources