This guide to managing fibromyalgia is for you. You who have just been diagnosed with fibromyalgia. You who are struggling with symptoms and finding little relief.
As a fibromyalgia veteran, someone who has been diagnosed for over a decade, I find myself giving the same advice over and over.
This post is a compilation to save you research time. It’s not a what is fibromyalgia- this post will give you a better run down of the who, what, where and when introduction.
This is the practical, what do I do next. It’s a lot, so take it one step at a time and bookmark this post so you can come back as you are ready. Catch the free download of these suggestions for reference to help you as you work through them.
I am sorry you haven’t been diagnosed with a “sexier” illness. That there is no one prescribed treatment plan that guarantees cure.
But there are many things for you to try. Loads of which you can enact yourself.
By following all of the things I share on this blog, I have gone from an average of 6-7/10 pain levels daily to 3/10 daily.
It’s been slow and arduous. I have researched it all myself and included my doctor when it involved medications. But the rest has been trial and error in my daily life.
Because most of it is basically a healthy lifestyle on steroids.
The Guide to Managing Fibromyalgia
Become your own driver
The number one thing I’d suggest is becoming your own advocate and information gatherer. Start taking notes or saving electronic ones now.
Read Dr Teitelbaum’s book From Fatigued to Fantastic (2020) and Dr Liptan’s The FibroManual (2016). These will give you a good understanding of the mechanisms that are currently understood about this illness. Their protocols are holistic and easy to understand. Some you need a doctors help with and others you can implement yourself.
I could really stop this post here – if you worked through one of these books, you would be in good stead. Next I will point out the key things that have helped me. Those things I’d start ASAP if I somehow was rebooted back to my diagnosis.
Low Dose Naltrexone
It helps with sleep, pain, fatigue, stamina, gut health and so much more. Prior to LDN I slept in one hour blocks and rarely achieved deep sleep. Now I can get up to 15% (the range we need is 12-23%) in conjunction with my sleep hygiene and the supplement I recommend below. It makes a difference as all the good things happen during sleep in our brains.
There are many supplements recommended for fibromyalgia. The best way to target this and not waste money on most of them is to get testing to determine your deficiencies. Learn more about supplements for fibromyalgia here.
The key supplement I take is Recovery Factors, which is an amino acid supplement. Doctor Teitelbaum offered a study at the end of 2019/early 2020 and I was lucky enough to take part. I got two bottles to trial and it helped me so much I continue to buy it and pay the shipping to New Zealand! Here’s my post about it.
I am not a nutritionist and have no training whatsoever. But I have done A LOT of research.
The only diet I believe in is one full of vegetables, fruits and whole grains. And avoiding your own intolerances (do get on this). Nutrition is highly personalised but one thing is true, we need high quality nutrients and less anti nutrients.
You have a certain level of energy available right now. You need to figure out how to live well within these confines so you don’t cause more pain and fatigue.
Pacing has been crucial for me. Here is a training all about it.
Finding a way to rest and counteract the insomnia is crucial.
I highly recommend trying Yoga Nidra guided meditation as a way to pursue true rest for the day time and to help you fall asleep at night.
I’d also recommend looking into restorative yoga for calming the central nervous system.
Find out more about the central nervous system here.
You have likely heard or been told exercise is highly recommended for fibromyalgia. Well, yes and no. It is great for us, but only when done within our specific context. No pushing to exhaustion and pain.
For this reason I love mindful slow yoga for gentle movement (and walking). In 2019, after years of practicing (and adapting) yoga for myself and trying to find suitable yoga to recommend to you, I trained myself. I became a yoga teacher, which was a bit of a bucket list dream that I had no idea I could accomplish.
Now my dream is to share these tools with you. Why? Because I use these tools to help me manage my symptoms. And they are available anywhere, anytime you need.
- Gentle stretches to use as needed in the day.
- Mindful movement as exercise.
- Restful poses to induce the relaxation response.
- Yoga Nidra guided meditation for rest and to help with insomnia.
- Breathing practices for many benefits including calming the central nervous system.
Can you see why I love it?
The trouble is many of us have been put off it in one experience or another. My goal is to share accessible yoga that simultaneously helps us with our symptoms.
To this end I have the following to get you started:
- The free five minutes a day for five days pose challenge
- Yoga Nidra guided meditation free download
- The Yoga for Fibromyalgia Sampler – my four best practices for us
- Yoga for the Chronic Life virtual yoga studio – Everything I’ve managed to create for us including bed, chair and mat yoga and much more.
Never Give Up Hope
The final part to this would be never give up hope. Amidst those long nights of painsomnia (insomnia and pain living together), during flares and when something doesn’t work for you, keep the hope alive.
There are many things to try. And much beauty, even in pain. There is always something to brighten your day. Compile a list of the things that bring you comfort in a flare. Compile a list of things you can do in ascending order of ability (my last idea before just bunkering down to sleep is to listen to a familiar audio book with my eyes closed). This way you can still do something that brings you comfort or joy.
Resource to help you with your plans: The Ultimate Fibromyalgia Wellness Planner
Free checklist of the suggestions in this guide for managing fibromyalgia to help you as you work through them.
I hope this Guide to Managing Fibromyalgia helped you. Please do share it with anyone you think could benefit. And more importantly, please try something and tell me how it went.