When I was offered a trial of the Pathways Pain Relief App, I had seen these pain apps and been curious for a while. The basis of science and the mind-body connection as a way to help treat chronic pain resonates strongly with me. Clearly, as a yoga teacher!
When I was offered the opportunity to review the Pathways Pain Relief App, I jumped! I was given a one year trial in exchange for my honest review. Here it is!
A bit about Pathways Pain Relief App:
Educational sessions in pain science
Meditation and mindfulness
Physical exercises
What can Pathways help with?
According to their website any pain of a chronic nature (lasting three months).
What can you expect from the app?
“We take patients on an interactive journey that starts with pain science education. Understanding that pain is much more complex (and interesting!) than a signal from damaged tissues, is an important step towards turning down the volume on pain. We then move onto breaking any behaviours that could be keeping your pain system in high-alert. We also cover physical therapy, guided imagery, visulization and mindfulness exercises, hundreds of meditations and more. Our sessions are audio based and between 2 and 20 minutes long.”
My Experience with the Pathways Pain Relief App
As a busy mama of three children six and under I don’t have the time for full on programme. I do have time for 2-20 minute audio sessions to be completed on my own schedule. In addition there really is nothing to lose, this is all natural and is bound to have relaxation benefits if nothing else. And we can all benefit from relaxing more.
The first thing I went through was the collection of meditations, there is a great selection for pain, relaxation, sleep and more. So that is a great resource.
I went through several of the lessons and then lost steam. It felt a little like we were being told that if we ignore the pain it will just go away. I understand the basis of not focusing on the pain and letting it become part of your identity. I fully understand that the brain is the main cause of the pain in fibromyalgia but I don’t believe you can just push through, ignoring it.
However, knowledge is power, and if you are at the beginning of your journey with fibromyalgia and chronic pain – this is a great way to learn. It is presented in bite sized chunks. Easy for brain fog and to implement.
If education/information is your cuppa you might like:
The founder had told me that there were some extra resources coming including some physical practices. That is what I was waiting for before sharing this review.
The update is fantastic! My subscription has lapsed so I can’t try everything but it is a great resource.
There’s yoga, physical therapy, challenges, extra masterclasses, guided breathing and more. As a yoga teacher, with my own virtual studio, I don’t need the yoga, breathing or meditation myself!
The masterclasses include How to Sleep Better, Epigenetics: Reprogram Your Genes and Finding the Motivation to Heal. All interesting topics to me.
At $14.99 a month, $69.99 a year or $299.99 lifetime it is worth a try if any of these options appeal. You can also try it free using Google Play or App Store.
Pacing is a key concept for people with fibromyalgia and other chronic fatigue-based illnesses. We hear about it all the time. But how do we actually take it and use it in our daily lives to help us to improve our quality of life? A member of the Melissa vs Fibromyalgia Membership team asked me to put this together, so here it is.
Pacing with Fibromyalgia Training Video Part Two
https://youtu.be/saN-FjyyLu8
In this second part of the pacing training series we talk about how pacing can look practically in your life – the different parts of your life you can use it. From work hours, to exercise, to managing your energy across the day. We also talk about the difference this has made for me.
In this talk we are going to talk look at what my pacing includes (all of the things you can consider and use the idea for). What the point of it is. As we said in the first talk, pacing is a broad tool that we can apply every day. It applies to the whole of life balance, how many hours total we work/volunteer etc. It applies to how we manage our activities during the day. How we approach exercise etc.
What is this all in service of? What is my main aim?
As much symptom reduction as possible! My biggest aim in life, besides being a good mama and helping as many people as I can with my work, is the least pain and fatigue possible.
What has pacing done for me?
Sleep better, the less overtired I am the better I sleep. If I’ve had my rest breaks, relaxed in the evening and gone to bed at a decent time I sleep much better than if I don’t. Fun fact: I sleep the worst on days when I haven’t rested and go to bed late, that sleep reverse psychology doesn’t work here!
Reduced pain – by taking my rest breaks and adhering to my framework I experience less pain. Especially by limiting computer time.
Less brain fog and overwhelm.
More enjoyment.
Better quality of life.
Part three where we get really practical and make your plans, is available only for the Melissa vs Fibromyalgia Membership team. The membership team already has access to the three videos, three audio versions, the downloadable PDF toolkit and three templates.
Do you want some help with the rest portion of your pacing? Join us for the free workshop all about the a super restful type of yoga.
What is the membership team?
It is an affordable way to get support, resources and practical tools to save you time, energy and money. There is a wealth of information in the resources library and in the exclusive group we go in-depth and work together on our journey. It also supports me to enable making these resources (over 200 blog posts, over 100 videos and more) Join us today to grab your spot.
Being home-bound is not unusual for many chronic illness fighters. But being absolutely unable to leave the house is new for most of us.
So in this post I am going to compile a list of things that you might like to do while you are home-bound. As new ideas come my way, I will add to it.
Please remember, that even if you are busy with small children or working, as I am (both), you still deserve to take time out for your own self-care.
Affiliate notice: Please note that some of my links are affiliate links. If you make a purchase using these links I may make a commission at no extra cost to you.
Recipes/Healthy Eating
Would a massive list of low histamine recipes help with some ideas for cooking and baking? I have you covered with this list from Through the Fibro Fog.
Learning
Would you like to do some learning while you are at home?
Alison -Their About page says, “We believe that free education, more than anything, has the power to break through boundaries and transform lives.” And living with chronic illness is definitely a barrier to further learning.
I have my eye on a few of their free courses for some future up-skilling. With options for 2-3 hour certificates or pathways for diplomas there is a lot to search through. Subjects range from touch typing to French to graphic design to project management.
You can also teach yourself some skills from YouTube videos. Think about what you have been meaning to learn about it likely exists there.
Movement
Would you like to keep moving, within the bounds of your current physical ability? I have you totally covered here.
My free yoga for fibromyalgia challenge is here. Give five yoga tools a go in your own time to see how you can incorporate them into your life in as little as five minutes a day.
If you would like my entire repository of online, on-demand yoga, breathing and meditation classes and courses then you are welcome to come and join Yoga for the Chronic Life virtual studio. I have been building this for several months now.
You could walk one mile in your lounge with Leslie Sansone. I love her videos. When I was struggling to do any movement when heavily pregnant with severe pelvis issues I did some gentle walking with these videos.
Hello friend, are you new here? I am Melissa a mama, fibro fighter and yoga coach. Join the newsletter list for updates, my free resources library and check out the archives – there are over 200 articles here to help you. My free course You vs Fibromyalgia is also here.
Join us for the free workshop all about the super gentle type of yoga that I am super in love with!
Have you thought about your self-care plans for this year yet? Self-care is as vital as it is undervalued. Especially for busy women juggling multiple priorities. Add in chronic health issues and it should be compulsory.
Accidental multi-tasking is one of my favourite things – a two for one on your energy levels. When self-care doubles as something that also manages my health, I’m pretty stoked.
Here are my top five self-care plans for 2020 that also double as part of my chronic illness management plans.
Meditation
If you’ve read my blog for any amount of time, you will know that meditation saved my life. I do it every single day, and if I must miss a day it’s very rare. It gives me deep rest my body doesn’t even achieve during sleep. It tops up my energy levels for the afternoon. It calms my central nervous system. It is just for me. 15-30 minutes of pure self-care.
Try it: I have a free challenge for you to try it out for five days.
Do you meditate? Tell us about your practice in the comments!
Yoga
Ya’ll know I LOVE Yoga. Yoga is simultaneously mindful movement (gentle exercise), relaxation, stretching, strengthening, pain management and a sleep aid (for me). It balances the central nervous system which has been key for me. I have shared extensively how I use it to help me. Here’s the short of it: One off poses, “micro yoga” formal practices (of 10-20 minutes) and a bed time class I made to help me wind down for sleep.
Join us for the FREE five minutes a day for five days yoga for chronic pain and fatigue challenge
Have you tried this challenge? Please tell me if so!
Getting to bed on time
Sleep is way too underrated. Seriously, lack of sleep will kill you (slowly) and make you feel terrible. I’ve written extensively about it. Going to bed around the same time each night is a key part of good sleep hygiene aka practices that help you sleep.
(Who just went, “What? I can’t treat myself. Ain’t nobody got time or money for that! It need not take much money or time!)
What is something that makes you feel super special that doesn’t cost the earth? This year I’d like to attempt something different each quarter: a manicure, a massage, a weekend away with the husband etc. With three kids 5 and under we’ve been snowed under and going to the physiotherapist every month has been the extent of it for me.
Try: Schedule something right now! A manicure? Book one once a month, schedule a time to do it yourself, or swap with your friend to do each other. Massage? Book one once a month, swap with your partner, or get out that lavender oil and give yourself a hand and foot massage. A Saturday morning lie in? Negotiate with the partner if you have kids, or send them to grandparents/aunts/uncles and grab at least one a month.
Journaling
I am an analyst, a thinker, a written processor. So taking the time, even just five minutes to process with my pen is helpful for me to work through things. Even if you’re more of a talker, research shows journaling to be useful. You can have free reign to vent. To get things out of your head. Write down memories. Whatever works.
Try it: You can make a habit of giving yourself 1 or 5 minutes a day, a gratitude journal of just three good things or maybe you could draw in your journal.
Do you journal? Tell us how you do it in the comments.
Want to jump in and get some real, concrete help with your self-care in 2020?
So these were my top five self-care plans for 2020, I’d love to know what are yours?? Tell us in the comments below.
I ask group members regularly what topics they would like me to share about, “how to save money on physical therapies” was the top request on the last post where I asked for suggestions. So here I share how you can spend less money on physical treatments for chronic pain and strategies for decreasing your pain at the same time.
What a whopper! As soon as I read the comment, I was formulating ideas. As a person who has tried physiotherapists (many different ones), Eastern practitioners, massage therapists, osteopaths, chiropractors, personal trainers (who did not get it) and more, I know the costs involved here. We run a public system here in New Zealand so none of these private physical treatments are funded at all.
When I was at my worst I was going weekly, paying $50 or $60 a session to very little benefit. As I have finally put these things into place I have reduced to three or four weekly – this is a saving of $150-200 per month! That adds up!
These are the things that you can do to reduce the amount of treatments you need from physical therapists (physiotherapists, massage therapists, osteopaths, chiropractors, etc.). If they are not necessarily easy, when are they ever?
The four ways of how to spend less on physical treatments for chronic pain
1. Remove or reduce the things that perpetuate the physical issue the physiotherapist/massage therapist/chiropractor etc. has to work on.
This might be a tough one as you may not be willing or able to do the things. For example, working full-time on a computer really exacerbates my neck and shoulders. I cannot, no matter the steps I take to mitigate it, experience less pain and keep doing it. Do you engage in something that aggravates your tricky spots? Is your bed and pillow correct for your needs? Check your breathing!
Let yourself brainstorm as there might be lots of things that come up.
2. Work on the whole of life things
So a lot of our physical issues are related to our overall health. When the fibromyalgia was worse, I needed to see the physical therapists for in search of relief (which never came).
When I changed my entire life – reducing work hours, cutting my commute, moving to a warmer climate, learning to rest (and later meditate), gentle exercise (which for me meant cutting back!) etc. – the amount I needed to see the physical reduced.
3. Finding the right treatment
This alone halved how often I
had to go. For severe, recurrent trigger points in my neck – for which I’ve spent at least $1500 per year for over
10 years trying to get some relief from – I have the right practitioner and
treatment at last. It’s a physiotherapist who places acupuncture needles into
the trigger point, leaves it to relax and then performs gentle traction and
stretches. The amount of time and money I spent on massage therapists,
physiotherapists, osteopathy and chiropractic is insane.
Ask yourself, does that
massage or chiropractic session actually help enough to justify the cost? Does
the benefit hold long enough to be justifiable?
4. Learn to do things yourself
This might be the most
important and the easiest!
For me, this is copious amounts of stretching/yoga.
Meditation is also helpful, especially guided meditations for pain relief and relaxation. You’ve heard me talk about this for years. Insight timer free app.
Always ask a practitioner you see to give you suggestions for things you can do at home and DO them.
So these are my top four ways to spend less on physical treatments (and reduce your pain at the same time). Are you working on any of these areas? What is your favourite way to cope with physical pain?
It is a wrap 2019! It is that time of year! Time to recap 2019 and look ahead for 2020. A new decade and a new year at the same time. It is full of promise.
Here I share the top posts of 2019 so that you can recap the key things we have been looking at in our journey fighting chronic pain and fatigue.
Ways to make money with fibromyalgia.
In this post I shared genuine, micro business ideas. Not get rich quick ideas. These are ways that you can look to make an income from home on your schedule.
This is a surprising one, this is a post from the very beginning when I was writing diary-like entries to share my journey while pregnant with no knowledge or resources available.
6 Practices for calming the central nervous system
In this post I share six very helpful ways to calm down after a stressful situation. I used these when a car drove into the back of us when me and my tiny baby were in the car!
In this post I updated the first post I wrote about what works for me – hint: it is mostly the same but I provide more detail. This is my protocol!
My low dose naltrexone one year experiment
My life has irrevocably changed thanks to this off-label, low-side effect medicine. I am so grateful for the past two years. This post shares the five ways it has helped me so much.
In this post I shared 9 inexpensive items I use to fight fibromyalgia. The first I use almost every day!
So there you have it, the key posts people were searching for this year. I hope they help you as you consider what you will tackle in 2020 for your journey toward thriving with chronic pain and fatigue.
Free live talks
In 2020 I have big plans to keep supporting you with this blog, the Facebook group, more live trainings and of course, adding to Yoga and Meditation for the Chronic Lifevirtual mindful movement studio.
Do join us for the free training on the Facebook page “My Top 5 Self-Care for 2020” on the 5th February.
For more information:
Hello friend, are you new here? I’m Melissa and I am on a mission to see that everyone receives resources and encouragement to thrive with fibromyalgia. Please come and join my free You vs Fibromyalgia micro course by signing up to my newsletter. You will receive access to a free resources page too! If you are curious about me and my journey you can have a search through the archives. Check out the What I Offer Page for all of the resources here.
What is the best way that exists to improve fibromyalgia? In this post, I share the best information that exists right now. I am keeping an eye on the research being done by Dr Jarred Younger and the Neuroinflammation, Pain and Fatigue Laboratory and I encourage you to as well. They are at the forefront of the research on fibromyalgia.
I believe that everybody can improve their quality of life. Whether you are suffering from chronic pain, chronic fatigue, insomnia, myofascial pain syndrome, fibromyalgia – I believe there are steps we can take to improve our symptoms. I am not sure about complete recovery, yet, but I have personally halved my pain and fatigue levels. I have also dramatically improved my sleep – I no longer spend hours trying to get to sleep, sleep in one hour blocks or spend hours awake in pain in the night. It is just far and away better than before.
How did I achieve this?
By following the advice of the authors in the following two books. And by working away at lots of little steps every single day.
I also believe if we gave these books to people as soon as they were diagnosed and their doctors were willing to work with them through them, then they would not decline as far and would begin to improve sooner.
Affiliate notice: Some of these links are affiliate links and I will make a small commission at no extra cost to you.
This book was written by a doctor who has fibromyalgia herself and has dedicated her career to treating it. In a recent interview I saw with her, she said she believes herself to be around 80% better to what she was (following her own advice) and even works full time as a practicing doctor in addition to a lot of advocacy work and blogging etc. She also believes we may have the tools for complete recovery available in the next ten years!
This book is also designed to take the back portion to see your doctor and help them treat you. Especially the sleep section.
Another doctor who has fibromyalgia and who has dedicated his career to helping patients with it. A holistic protocol that begins with sleep. If you Google his name, you will find a multitude of resources, including videos and interviews and an entire website.
Both of these books are multi-pronged attacks and deal with more than just band aids for pain and fatigue.
Even if you only found one nugget in these books, you would improve your quality of life. These books are packed full of useful things to enact.
If you are able to follow instructions and try things yourself – then you will surely see results.
Dr Liptan also gives further detail about nutritional changes in The Fibro Food Formula book – so check that out!
All of these areas take time and trial and error. If you want to DIY it, write out a big list of goals or things to try from these books and slowly working through it
If you want support, then you can get some coaching (with me or another health coach). They can help you break it down into manageable chunks.
My Hypothesis
I believe if I was handed one or both of these books at the beginning (and had a doctor who would help me with their parts) then I wouldn’t have gotten so sick and it wouldn’t have taken so long to get better. The cascade of physiological flow on effects wouldn’t have occurred.
To Do List
Read one or both of these books
Write out the main list of areas (sleep, pain, nutrition etc.)
Fill in ideas to try under each area, including what you need to ask your doctor for help with
Work on each part slowly
If you can, engage a coach to help you with this work – it’s complex and there’s a lot to it
If you want to start your own small, sustainable steps join us in Yoga and Meditation for the Chronic Life virtual mindful movement studio, here we take mindful movement, breathing, meditation and turn them into tools for daily symptom management.
Do you think you can improve your quality of life? Have you done it? Followed one of these books, or another protocol? I’d love to hear from you in the comments below.
Do you agree with my hypothesis? That we can improve fibromyalgia now by following one or both of these two books?
Want to learn about a type of yoga that can help us to balance the central nervous system, help us to get some rest and sleep better? Join me for this special free workshop.
So what would I keep in this list? What would I add?
My current understanding is that there are six key areas to fight chronic pain, chronic fatigue and fibromyalgia:
Knowledge and taking control for ourselves
Sleep
Perpetuating factors
Central nervous system
Fatigue and pacing
Pain relief
What works for me right now?
Find the video here
Sleep
Sleep is the biggest component of my journey. I will discuss this more under Low Dose Naltrexone, below, but it is HUGE. See also my giant insomnia post for more.
Pain Management
Aside from sleep and physiotherapy I do a lot of stretching, self-trigger point work, yoga, meditation, essential oils, heat and more. I am employing more natural remedies than medicinal.
Low Dose Naltrexone– is now number one on my list. This one covers sleep and pain management . It helps me sleep in more than one hour blocks, which has been the biggest part of my puzzle. Now, when I sleep only six or seven hours (due to the baby) but a few hours in a row, I feel infinitely better than I ever did on my eight or nine broken hours. As a result I experience less pain, less anxiety, less brain fog. More health and a much better quality of life.
Physiotherapy – this is still crucial, more specifically the insertion of dry needles into trigger points and left for 15 minutes to rest to encourage blood flow and relaxation followed by stretching and mobilizations. I only have to go every three weeks at the moment, which is a big win as I pay privately for every treatment. Learn more about myofascial pain syndrome and trigger points here.
BONUS: Building my toolkit of things I can do myself anytime, anywhere to help. Yoga is a huge part of this for me. I use yoga and meditation daily to help. From getting to sleep, in the middle of the night, in the day time and at random times. If you would like to learn from my toolkit, then join us in Yoga for the Chronic Life virtual studio now!
A combination of reduced work hours and reduced activity levels. Both are key. Reduced work hours is the first thing that jump started my journey to wellness and is still part of managing my energy envelope.
Perpetuating Factors/Normal Human Needs
For me, this means managing the myofascial pain syndrome and the fibromyalgia. Most of my six key ways hit multiple symptoms. Aside from managing my posture, avoiding triggers and sleeping as best as I can, these two are important:
Nourishment – I am learning about the importance of nutrition right now. I haven’t yet finalised my template for eating going forward but all of my research seems to suggest the number one thing we can do is prioritize vegetables and fruits. Then I am prioritizing healthy fats (olive oil, coconut oil etc) and good quality protein. This leads to a lower consumption of grains. As an offshoot, supplementation, is key. I am using magnesium and 5HTP to sleep (after finally getting off amitriptyline after years which precluded 5HTP). I also supplement with MSM as our soils are generally deficient in sulphur and this seems to help me. I am preferring whole foods over supplements – I am taking moringa powder or hemp powder for naturally occuring vitamins and minerals.
Gentle exercise – this is still key but I am able to do more than I was previously. I can now do 30 minute walks without pain hangovers. My exercise of choice includes yoga, walking and Pilates.
Central nervous system
Meditation– this has only become more integral to my daily life. I have meditated daily for more than five years now. I use it for rest (I can’t nap), for pain relief (or a break from it when it is bad) and stress relief. The benefits I have reaped since my initial post are so many that I am a mindfulness and meditation cheerleader. You can sign up for my free workshop Mindfulness for the Chronic Life here.
So these are the key things that are working for me now.
I know it is complex. It has taken me years and a lot of research and personal trial and error to figure out. I have provided many links in this post to help you in your research.
If you would like to learn more about how to get a jump start on your journey then you can join You vs Fibromyalgia free micro course and my newsletter list (which will give you access to a heap of other free resources including printable templates, reports, micro courses, workshops and more).
Do you like the work I do here ensuring that people with fibromyalgia receive the tools, education and support they deserve? Especially while pregnant. Then consider joining the Melissa vs Fibromyalgia Inner Circle Membership group and get access to the exclusive members library. It’s a pay what you can model starting at just $5 per month.
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 video: Insomnia and Fibromyalgia
Key facts about insomnia and fibromyalgia
Insomnia is:
A key problem for people with fibromyalgia and many other chronic illnesses
Debilitating and makes other already incapacitating symptoms worse
A recipe for a shorter, less fulfilled life
Pain inducing – even for those without chronic pain conditions
A money drain – 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.
And:
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 pain, fibro 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).
If you are suffering from insomnia and fibromyalgia what can you do?
Learn
Experiment
Beg for help – show your doctor you have tried all the things and hope for help!
Would you like to come and learn about a type of yoga that is super gentle, restful and can help you sleep? Join my free workshop.
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.
My Fibromyalgia Origin Story Video
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 (it took place over a long time) 0:33 seconds
When it got better (when I started my journey and the long way I took to get here) 5:40
Melissa vs Fibromyalgia book (affiliate) this is where I share my journey, a consolidated and highly edited version of the blog.
Fibro Framework Workbook (affiliate) this workbook is the framework by which I understand fibromyalgia now and helps you to work through your own plans for wellness.
Pregnancy and Fibromyalgia book (affiliate) this shares my journey through three pregnancies as a mama with chronic pain and fatigue.
I’d love to hear your origin story – did it take a long time or develop seemingly overnight? Did diagnosis take a long time?
Do you like the work I do here ensuring that people with fibromyalgia receive the tools, education and support they deserve? Especially while pregnant. Then consider joining the Melissa vs Fibromyalgia Inner Circle Membership group and get access to the exclusive members library. It’s a pay what you can model starting at just $5 per month.
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