Haunting

This week is ME/CFS Awareness Week (at least for some of the world), so shout out to all the folks out there living with this condition and here is a masterlist of every resource I've found so far on myalgic encephalomyelitis...

🔹 General info:

It’s not just ‘chronic fatigue’: ME/CFS is much more than being tired

What is Post-Exertional Malaise?

🔹 Diagnosis:

Diagnosis of ME/CFS; What You Need to Know

ME/CFS and Blood Tests – an in-depth look at what blood tests should be done to ensure your diagnosis of ME/CFS is correct, what the results mean, and when blood tests should be repeated

🔹 Managing fatigue:

Post-Exertional Malaise (PEM) – What It Is and How To Avoid It

Pacing Tactics

Ideas for Managing Fatigue (Note: This piece is sponsored by CareCo Ltd and features affiliate links)

🔹 Other symptoms:

Strategies for Brain Fog – This article is aimed at people with long-COVID but the strategies suggested may work for anyone dealing with brain fog

Sleep Tips for New Spoonies – not specifically aimed at ME/CFS but many of the tips will apply

🔹 How to cope with ME/CFS:

Energy Conservation – a Tumblr post by @rthritis

Energy Conservation Techniques; Home Management – a Tumblr post by @rthritis

How to Keep House While Drowning: A gentle approach to cleaning and organising by KC Davis [📖 book recommendation]

11 Tips For Making Meal Prep Easier to Save Spoons

The Tray™ – how to feed yourself without preparing food [🎥 video]

Tips to make showering easier when you are physically disabled – a Tumblr thread not specifically aimed at ME/CFS but many of the tips will apply

The 7 Types of Rest & How to Use Them to Feel Better [🎥 video]

The Bedbound Activity Masterlist

🔹 Treatment, diet, and lifestyle:

All Current ME/CFS Treatments

The low histamine diet – a resource from Johns Hopkins' ME/CFS clinic

Dietary Supplementation for Fatigue Symptoms in ME/CFS – a journal article looking into supplements like L-carnitine and guanidinoacetic acid, oxaloacetate, CoQ10–selenium combination, NADH and NADH-CoQ10 combination [📃 research]

Fact Sheet: Food and ME/CFS – covers what foods are best to base your diet on plus some information about supplements, weight gain, weight loss, gastrointestinal symptoms, and when to see a dietitian; by The Association of UK Dietitians

🔹 Other:

Tips for Applying for Benefits with ME/CFS [🇬🇧 UK]

Please let me know what other resources you would like to see on ME/CFS; asks (including anons) are always open and you're welcome to reblog or comment to make a suggestion.

This website is an interactive self-care guide for when you feel like shit; it asks you a few questions and gives you gentle reminders for self care...

➡️ click here ⬅️

Shoutout to leftists who are too poor/disabled to shop at local/small businesses.

Shoutout to leftists who are poor/disabled and have to buy things from Amazon and other megacorps because it’s the most cheap or convenient.

Shoutout to leftists who are too poor/disabled to reduce their environmental footprint because they need the single-use plastics.

Shoutout to leftists who can’t go vegan because of dietary needs, disordered eating, or neurodivergence.

Shoutout to leftists who can’t volunteer or go to community events/protests/noise demonstrations because of inaccessibility.

Shoutout to leftists who can only be politically active online because they’re housebound.

Shoutout to leftists who are disabled and are rarely politically active because they simply don’t have the energy.

Shoutout to leftists who can’t be politically active because they’re under the care of a guardian or are trapped in an abusive situation, and they don’t have control over their finances/belongings.

Shoutout to leftists who can’t read theory, or who have trouble reading theory, but still do their best to learn.

Shoutout to leftists who can’t understand theory at all because of cognitive/intellectual disability.

Shoutout to leftists who want to be more active in their community but can’t because they struggle with anxiety, socializing, or maintaining relationships.

Shoutout to leftists with personality disorders, complex trauma disorders, conduct disorders, OCD, psychosis, and any other leftist whose personality or thoughts often unwillingly go against their beliefs due to a trauma response or chemical imbalance.

Shoutout to leftists who don’t have any “practical” skills that would be needed in a commune (i.e farming, building, sewing)

Shoutout to leftists who are too busy simply trying to survive to even think about being politically active.

Shoutout to leftists who have to always ask for mutual aid but can never give back.

Shoutout to all the leftists who can’t do this and can’t do that and can’t do the things that leftists are “supposed” to do. No one person is perfect.

You aren’t a fake leftist for not being able to do these things. All that matters is that you put in the effort, in whatever way that you can.

(The best of this post and its reblogs, but with links that work)

Here is a website where you can scroll down to all the different levels of the ocean 

Here is a website where you can see the future of the universe

Here is a website where you can press a ‘make everything okay’ button, over and over, until things really are okay

Here is a website that you can read if you feel like a burden

Here is a website where you can look at strobe illusions (TW strobe/flashing)

Here is a website where you can cut stuff up (TW blood/sh)

Here and here are websites where you can play with sand

Here is a website where you can draw with macaroni and other fun foods

Here is a website where you can paint someone’s nails

Here is a website where you can grow a garden with emojis

Here is a website with hundreds of videos of people hugging you (rightfully dubbed ‘the nicest place on the internet’ because it really is, y’all, it made me cry)

Here is a website that will take you to other useless websites

Here is a website where you can make a tiny cat play bongo drums (and other instruments!)

Here is a website to help give you gentle reminders <3

Here is a website where you can grow a tiny farm

Here is a website where you can take a bunch of scientific personality tests

Here is a website of calm rain noise

A bunch of ideas I've found for people who are housebound/bedbound that aren't just the usual "try knitting"...

Learn something new – investigate a new topic, learn a bit of sign language, start memorizing all the countries on a map, pick a historical figure and see what you can find out about them, etc.

Watch something you wouldn't normally watch; you might discover something new you like

Send an ask to all your mutuals (think of something different, personalized for each person)

Start a new, themed Tumblr blog

Start a new Pinterest board

Read a random Wikipedia page – WikiRoulette

Find out what happened on this date in history – on Wikipedia or Britannica

Join Goodreads (or an alternative), and mark off and rate all the books you've read (maybe even write a few reviews)

Write online reviews for movies you've seen recently

Search for quotes you like and write them down / blog them

Create a masterlist

If you're good at finding info, ask your friends, family, or mutuals if they need help tracking down information

Search for a new online community, join, browse, and offer help/support

Try writing a fanfic – it doesn't have to be good and you don't have to show anyone

Try writing poetry – this doesn't have to be good either

Put on some music and try to learn more of the words

Webtoon has a bunch of free (indie) comic series to read across a range of genres and some of them are short enough to be well suited for people with high fatigue and/or low attention – Webtoon website | Android app on Google Play

Find the website for your local volunteer centre/support organization and see if there's any ways you can volunteer from home (there are more and more opportunities like this being developed)

Write image descriptions. There are a lot of memes, photos, and gifs shared every day that don't have IDs and you could add one in a reblog. I've also heard of discord servers where people volunteer their time to write IDs.

Create plain language translations of news or concepts/info (check out Autism against Fascism, a group that makes plain language articles about fascism and antifascism)

In case you missed it, there's also The Bedbound Activity Masterlist (three blog posts full of ideas, including low-sensory and low-energy activities) and a few ideas in this ask post.

Bored spending another day bed-rotting? Don't worry, an amazing person called Sky Stanton has got a bunch of ideas for you!

> Part 1 (on Medium)

> Part 2 (on Medium)

> Part 3 (on Medium)

An audio version is also available on Soundcloud (via the part 1 link)

I'd like to compile a master list of aids/tools/treats that are helpful for people with fibro and make it into a post for the end of Fibromyalgia Awareness Month... So what's always on your bedside table or in your bag? Or if you could have a chronic illness support station beside you, what would it be stocked with?

I'll start us off... Things I like to keep nearby:

Lip balm and moisturizer because my meds dry me out

Dry mouth gel (why do so many meds cause dry mouth?!)

Gloves and spare socks to keep me warm

Meds (it's so annoying having to get up and look for meds when you're in pain)

Wipes for easy face washing or for my daily ritual of spilling my coffee on myself

Drinks / water bottle

Electrolyte sachets / Gatorade / Powerade

Ginger ale (for nausea)

Snacks / protein bars

Meds (pain relief, rescue meds, and your everyday meds)

Anti-flamme / deep heat / topical pain relief creams or patches

Mouth wash or disposable toothbrushes (for when getting up to brush your teeth is too much)

Headphones

Ear plugs

Eye mask (for sensitivity to light and naps)

Headache cap

Braces for joints / KT tape

Weighted blanket

Heat pack / electric blanket

Tens unit

Massage rollers / tools

Pressure point hook (great for shoulder, neck, and mid back pain)

Compression socks / gloves

Spare set of clothes (for days when a shower isn't possible, at least you can put on fresh clothes)

Grabber stick

Tissues

Extra pillows / squishmallows

Comfort blanket / plushie

Lip balm / moisturizers

Hand sanitizer

Glasses and glasses cleaning cloth

Stim toys

Phone/tablet charger

Fan

Journal / sketch book (and pens)

Eating

- Eat smaller, more frequent meals throughout the day. For example, eat 6 small meals instead of 3 large meals. - Eat slowly. Give yourself the time you need to completely chew and swallow your food. - Fill cups halfway to decrease the weight you have to lift. - Support your elbows on the table while eating.

Grooming

- Sit to shave, comb your hair, and brush your teeth. - Avoid using aerosols and products with strong scents that could irritate your lungs. - Wash your hair in the shower. Tip your head forward keeping your elbows low and your chin tucked. - Support your elbows on the counter while grooming or shaving. - Use a blow dryer holder for blow drying your hair.

Bathing and Showering

- Allow plenty of time to shower. Consider taking your shower in the evening to avoid rushing. - Gather all the necessary items that you will need in advance, including your clothes. - Sit to undress, bathe, dry, and dress. - Avoid bending and reaching. i) Positioning your shower caddy lower so you can easily reach items when sitting to bathe ii) Use a long-handled brush to wash your back and feet - Use a hand-held shower head - Use soap on a rope or place soap in a nylon stocking and tie the stocking to your shower chair or soap dish. This eliminates the problem of dropping the soap. - Use body wash, shampoo, and conditioner in pump bottles for easy dispensing. - Take a shower with warm water - not hot! - Make certain your bathroom is well-ventilated. Leaving the bathroom door cracked can help with ventilation.

Dressing

Note: I'm still collecting resources so this post may be edited regularly as I add more links. (Share a resource for me to add or suggest a missing topic – drop a link in the comments or send an ask.)

What is fibro? Resources explaining the basics:

'Symptoms of Fibromyalgia' on The Mighty (a good overview for those really new to fibro)

Fibromyalgia fact sheet by Arthritis NZ (easily printable)

Overview of fibromyalgia on the NHS website

What Even is Fibro? - video produced by Fibromyalgia Action UK (hosted on YouTube)

Fibromyalgia in Children and Youth fact sheet by Fibromyalgia Association Canada

Fibromyalgia Canadian Multisystem Questionnaire - symptoms and signs checklist on fibromyalgiaaustralia.org.au

And people in the UK can order a free information pack here.

More in-depth info on fibro:

Wikipedia page on fibro

Information booklet by Fibromyalgia Action UK (covers symptoms, causes, treatments, and even has a section on UK welfare benefits and a section for family/loved ones)

Employee's Guide - Working with Fibromyalgia by Fibromyalgia Action UK

Young People and Fibromyalgia booklet by Fibromyalgia Action UK (includes a pull-out section for teaching staff and info for parents/carers)

The Fibromyalgic Pregnancy and Beyond by Fibromyalgia Action UK

What is brain fog? 'Fibro Fog Unmasked: How Fibromyalgia Impacts Your Brain and Memory' by Dr Alex Robber on chronicillness.co

This journal article discusses how much fibro can vary over time, concluding "The results suggest that some [fibro] patients experience fluctuation in symptoms over time, which may reflect the waxing and waning nature of FM and affect diagnosis and treatment."

A basic overview of what might cause flare-ups, and suggestions for things that can help prevent and help you recover

I've collected a bunch of resources on the causes/contributing factors of fibromyalgia in this post

On the diagnosis process:

This page by the Mayo Clinic lists what should be ruled out before giving a diagnosis of fibromyalgia

🇬🇧 [UK] What to do if your doctor doesn't believe fibro is real (on the Fibromyalgia Action UK website)

Co-existing conditions:

This is an easy-read article written by an MD that explains the connections between hypoglycemia and fibro, and how some of our comfort eating habits might be making our symptoms worse ("Researchers are very well aware of the fact that most individuals suffering from fibromyalgia also suffer from hypoglycemia, or low blood sugar.")

This 2021 journal article by Zetterman et al. covers a potential link between glucose tolerance and fibro ("Fibromyalgia (FM) patients have an increased risk for glucose metabolism disturbances, and impaired glucose tolerance may be associated with symptom severity... Impaired glucose regulation in FM patients is likely not due to FM itself, but to associated lifestyle factors.")

This is another easy-read article but on the connection between hyperglycemia and fibro

On chronic pain in general:

An explanation of the central sensitization theory by Innis Integrative

Nociplastic pain (a concept related to central sensitization) on Wikipedia

Tools, planners, and worksheets:

Printable daily symptom tracker on seefibro.com

Patient Self-report Survey for the Assessment of Fibromyalgia taken from Wolfe et al. (2011) but hosted on seefibro.com (a comprehensive tool for assessing and showing pain; great for sharing with your doctor)

Living Well with Fibromyalgia Workbook by the NHS (co-written by a couple of OTs, a psychologist, and a person living with fibro)

Flare-up plan template on fibromyalgia.org.nz

What to include in your 'Fibro Toolbox' by Canada's The Fibromyalgia Support Network

Lifestyle changes and strategies to manage fibro:

Avoid the "boom and bust" cycle – this article on The Mighty gives a pretty good run-down of this concept

About pacing... 'How the Spoon Theory Can Help Fibromates Pace Themselves' by Irene Roth on fibrosupportnetwork.ca

Energy Conservation During Daily Tasks by @rthritis

Energy Conservation Techniques; Home Management by @rthritis

How To Be Homebound (a US-focused blog post but there is still some helpful info for everyone)

'28 Unexpected Coping Techniques That Help People Manage Fibromyalgia'

'26 ‘Hacks’ That Can Make Life With Fibromyalgia Easier'

Things you need – Fibro toolbox

Things you might want in your 'fibro survival kit' (a collection of suggestions from me and other Tumblr users)

This Tumblr thread has more suggestions by me and a couple of others for items you need in your fibro toolbox

'Your wellbeing kete or toolbox' by Arthritis NZ

What to include in your 'Fibro Toolbox' by The Fibromyalgia Support Network

'20 Products People With Fibromyalgia Swear By'

Treatments:

Traditional Medications Used to Treat Fibromyalgia fact sheet by Fibromyalgia Association Canada

Article saying medicinal cannabis seems to be an effective treatment... 'Safety and Efficacy of Medical Cannabis in Fibromyalgia' by Sagy et al. (2019)

An article that is skeptical of how good CBD is... 'CBD for chronic pain: The science doesn’t match the marketing' by Harvard Health Publishing

LDN... 'Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels' by Younger et al. (2013) ("The preliminary evidence continues to show that low-dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain.")

A meta-analysis of publications (2979 titles) covering recommended treatments (both pharmacological and non-pharmacological): 'EULAR revised recommendations for the management of fibromyalgia' by Macfarlane et al. (2017)

Fact Sheet on Herbal and Other Natural Products by Fibromyalgia Association Canada

Myofascial massage... Benefits of Massage-Myofascial Release Therapy on Pain, Anxiety, Quality of Sleep, Depression, and Quality of Life in Patients with Fibromyalgia by Castro-Sánchez et al. (2010). ("Immediately after treatment and at 1 month, anxiety levels, quality of sleep, pain, and quality of life were improved in the experimental group over the placebo group. However, at 6 months postintervention, there were only significant differences in the quality of sleep index.")

Testosterone HRT may be an effective therapy for fibromyalgia... 'A novel use for testosterone to treat central sensitization of chronic pain in fibromyalgia patients' by White and Robinson (2015)

Testosterone therapy "dampens nociceptive neuronal signaling" and seems to significantly reduce pain in fibromyalgia... 'Treatment of pain in fibromyalgia patients with testosterone gel: Pharmacokinetics and clinical response' by White et al. (2015)

Breathing for pain:

Diaphragmatic Breathing: Why It Is The Secret Weapon Against Chronic Pain? by Susan Bee on Mayo Clinic Connect

Breathing Exercises To Calm Pain on The Pain Center Of Arizona's website (belly breathing, the 4-7-8 breathing exercise, and roll breathing)

More for your overall wellbeing:

Thinking about wellbeing holistically - the biopsychosocial model

Another perspective on thinking about wellbeing holistically - Te Whare Tapa Wha model

Self care self-evaluation (find out where you’re starting and get ideas for how to do self care)

How to make a self care checklist

The Bedbound Activity Masterlist: Part 1 by Sky Stanton | Part 2 | Part 3

'Writing Through Chronic Pain and Fatigue: How It Can Ease Stress' by Irene Roth on fibrosupportnetwork.ca

'Journaling as a Path to Emotional and Physical Healing for Fibromates' by Irene Roth on fibrosupportnetwork.ca

Endorphins: The Brain's Natural Pain Reliever on Harvard Health Publishing

Endorphins: What They Are and How to Boost Them by Cleveland Clinic

Cooking (and baking):

Epicurious Expeditions is a YouTube channel and Instagram full of accessible recipes – recommended via this Tumblr post

Tips for baking with hand pain

Tips for baking with brain fog

(plus check out the book recommendations section below for low-energy recipes)

Mobility aids:

'Fibromyalgia & Chronic Fatigue Syndrome Mobility Aids' by Adrienne Dellwo on Very Well Health

A post where I collected a bunch of resources on canes and how to use them

Tumblr posts and tags (that didn't fit in other categories):

This post is a template for emailing professors to get accommodations

This post by @hellyeahsickaf has links to blog articles that are basically a guide on how to be disabled. It will be most helpful to people in the USA but there's useful advice and ideas for everyone. Also, it is primarily aimed at ME/CFS but there's stuff for all disabilities.

All of the notes I've taken from readings and workshops are tagged as 'FibromyalgicAF notes'

Book recommendations: (not all my recommendations; some have been collected from other people)

'The Fibro Manual' by Ginevra Liptan

'The Way Out' by Alan Gordon (with Alon Ziv)

'Crip Up the Kitchen: Tools, Tips, and Recipes for the Disabled Cook' by Jules Sherred

'The Life-Changing Magic of Not Giving a F**k' by Sarah Knight (this is not a book about fibro but it's a great book for learning to let go of things that don't matter and spend your energy on things that do)

'How to Keep House While Drowning: A gentle approach to cleaning and organising' by KC Davis (recommended here)

App recommendations: (not all my recommendations; some have been collected from other people)

Finch (work towards goals and take care of yourself as you take care of a digital pet) – Android | Apple

Water Reminder (track water intake and get remindees to drink more) – Android | Apple

Guava (meds tracking and reminders, symptom tracking) – Android | Apple

MyTherapy (meds tracking and reminders, symptom tracking) – Android

Bearable (track symptoms, mood, period, and meds) – Android | Apple

Daylio (track mood and goals) – Android | Apple

Visible (track activity, manage pacing, budget energy, and discover what might be making symptoms better or worse) – find out if you qualify (not available in every country)

––––––

🟣 If you have a resource you think belongs on this list, drop a link in the comments or send an ask (anons are always open).

🟣 If there's a fibro-related topic I've completely missed, I'd also appreciate hearing from you in the comments or via ask.

it is insidious, it affects everything, fat people die from it. but no one speaks up.

i am mostly housebound, and the time i spend at home, i spend 95% in bed. i live with severe chronic pain and moderate-severe MECFS to name the worst of my conditions. i struggle with walking both due to excruciating pain and due to PEM & crashing from MECFS. i am mostly housebound, and the time i spend at home, i spend 95% in bed.

i use a rollator, but it isn't enough, i need a powerchair. but when i scheduled an appointment with OT i got told that they can clearly see my need for a powerchair, but that they won't prescribe one because "i need all the exercise i can get".

it is torture, it is cruel.

all my health issues have been blamed on my weight, to the point where they will not even examine me. they see that i'm fat and won't bother to even do a physical exam. i get denied treatment, i get denied medications, i get denied lifesaving mobility aids, i get denied healthcare.

i am scared. my pain will remain severe and my MECFS baseline continues to worsen, because of medical fatphobia. and no one talks about it. no one.

LEARN ABOUT MEDICAL FATPHOBIA.

SPEAK UP.

This resources has some simple suggestions for what you can do before, during, and after a flare to make it easier to get through:

"Either option can be the best choice in certain situations. Sometimes, in fact, you might use BOTH ice and heat.

... we asked some of our experts to break it down so you know which way to go if you’ve got back pain, a pulled muscle, a headache or some other form of discomfort."

"Is your pain new or old? The answer to that question often determines whether you go ice or heat for treatment.

The frozen route is typically your better option when dealing with fresh injuries or new aches, says sports medicine physician Anne Rex, DO. That’s because the chill constricts blood vessels to numb pain, relieve inflammation and limit bruising.

But if you’re dealing with a lingering issue, warmth may be just what you need.

That’s because applying heat increases blood flow, relaxing tight muscles and soothing aching body parts. This can be especially helpful to improve the range of motion in a joint that isn’t moving well.

...

Note: I'm still collecting resources so this post may be edited regularly as I add more links. (Share a resource for me to add or suggest a missing topic – drop a link in the comments or send an ask.)

What is fibro? Resources explaining the basics:

'Symptoms of Fibromyalgia' on The Mighty (a good overview for those really new to fibro)

Fibromyalgia fact sheet by Arthritis NZ (easily printable)

Overview of fibromyalgia on the NHS website

What Even is Fibro? - video produced by Fibromyalgia Action UK (hosted on YouTube)

Fibromyalgia in Children and Youth fact sheet by Fibromyalgia Association Canada

Fibromyalgia Canadian Multisystem Questionnaire - symptoms and signs checklist on fibromyalgiaaustralia.org.au

And people in the UK can order a free information pack here.

More in-depth info on fibro:

Wikipedia page on fibro

Information booklet by Fibromyalgia Action UK (covers symptoms, causes, treatments, and even has a section on UK welfare benefits and a section for family/loved ones)

Employee's Guide - Working with Fibromyalgia by Fibromyalgia Action UK

Young People and Fibromyalgia booklet by Fibromyalgia Action UK (includes a pull-out section for teaching staff and info for parents/carers)

The Fibromyalgic Pregnancy and Beyond by Fibromyalgia Action UK

What is brain fog? 'Fibro Fog Unmasked: How Fibromyalgia Impacts Your Brain and Memory' by Dr Alex Robber on chronicillness.co

This journal article discusses how much fibro can vary over time, concluding "The results suggest that some [fibro] patients experience fluctuation in symptoms over time, which may reflect the waxing and waning nature of FM and affect diagnosis and treatment."

A basic overview of what might cause flare-ups, and suggestions for things that can help prevent and help you recover

I've collected a bunch of resources on the causes/contributing factors of fibromyalgia in this post

On the diagnosis process:

This page by the Mayo Clinic lists what should be ruled out before giving a diagnosis of fibromyalgia

🇬🇧 [UK] What to do if your doctor doesn't believe fibro is real (on the Fibromyalgia Action UK website)

Co-existing conditions:

This is an easy-read article written by an MD that explains the connections between hypoglycemia and fibro, and how some of our comfort eating habits might be making our symptoms worse ("Researchers are very well aware of the fact that most individuals suffering from fibromyalgia also suffer from hypoglycemia, or low blood sugar.")

This 2021 journal article by Zetterman et al. covers a potential link between glucose tolerance and fibro ("Fibromyalgia (FM) patients have an increased risk for glucose metabolism disturbances, and impaired glucose tolerance may be associated with symptom severity... Impaired glucose regulation in FM patients is likely not due to FM itself, but to associated lifestyle factors.")

This is another easy-read article but on the connection between hyperglycemia and fibro

This 2023 study explored the link between dysphagia and fibromyalgia

On chronic pain in general:

An explanation of the central sensitization theory by Innis Integrative

Nociplastic pain (a concept related to central sensitization) on Wikipedia

Tools, planners, and worksheets:

Printable daily symptom tracker on seefibro.com

Patient Self-report Survey for the Assessment of Fibromyalgia taken from Wolfe et al. (2011) but hosted on seefibro.com (a comprehensive tool for assessing and showing pain; great for sharing with your doctor)

Living Well with Fibromyalgia Workbook by the NHS (co-written by a couple of OTs, a psychologist, and a person living with fibro)

Flare-up plan template on fibromyalgia.org.nz

What to include in your 'Fibro Toolbox' by Canada's The Fibromyalgia Support Network

Lifestyle changes and strategies to manage fibro:

Avoid the "boom and bust" cycle – this article on The Mighty gives a pretty good run-down of this concept

About pacing... 'How the Spoon Theory Can Help Fibromates Pace Themselves' by Irene Roth on fibrosupportnetwork.ca

Energy Conservation During Daily Tasks by @rthritis

Energy Conservation Techniques; Home Management by @rthritis

How To Be Homebound (a US-focused blog post but there is still some helpful info for everyone)

'28 Unexpected Coping Techniques That Help People Manage Fibromyalgia'

'26 ‘Hacks’ That Can Make Life With Fibromyalgia Easier'

Things you need – Fibro toolbox

Things you might want in your 'fibro survival kit' (a collection of suggestions from me and other Tumblr users)

This Tumblr thread has more suggestions by me and a couple of others for items you need in your fibro toolbox

'Your wellbeing kete or toolbox' by Arthritis NZ

What to include in your 'Fibro Toolbox' by The Fibromyalgia Support Network

'20 Products People With Fibromyalgia Swear By'

Treatments:

Traditional Medications Used to Treat Fibromyalgia fact sheet by Fibromyalgia Association Canada

Article saying medicinal cannabis seems to be an effective treatment... 'Safety and Efficacy of Medical Cannabis in Fibromyalgia' by Sagy et al. (2019)

An article that is skeptical of how good CBD is... 'CBD for chronic pain: The science doesn’t match the marketing' by Harvard Health Publishing

LDN... 'Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels' by Younger et al. (2013) ("The preliminary evidence continues to show that low-dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain.")

A meta-analysis of publications (2979 titles) covering recommended treatments (both pharmacological and non-pharmacological): 'EULAR revised recommendations for the management of fibromyalgia' by Macfarlane et al. (2017)

Fact Sheet on Herbal and Other Natural Products by Fibromyalgia Association Canada

Myofascial massage... Benefits of Massage-Myofascial Release Therapy on Pain, Anxiety, Quality of Sleep, Depression, and Quality of Life in Patients with Fibromyalgia by Castro-Sánchez et al. (2010). ("Immediately after treatment and at 1 month, anxiety levels, quality of sleep, pain, and quality of life were improved in the experimental group over the placebo group. However, at 6 months postintervention, there were only significant differences in the quality of sleep index.")

Testosterone HRT may be an effective therapy for fibromyalgia... 'A novel use for testosterone to treat central sensitization of chronic pain in fibromyalgia patients' by White and Robinson (2015)

Testosterone therapy "dampens nociceptive neuronal signaling" and seems to significantly reduce pain in fibromyalgia... 'Treatment of pain in fibromyalgia patients with testosterone gel: Pharmacokinetics and clinical response' by White et al. (2015)

Breathing for pain:

Diaphragmatic Breathing: Why It Is The Secret Weapon Against Chronic Pain? by Susan Bee on Mayo Clinic Connect

Breathing Exercises To Calm Pain on The Pain Center Of Arizona's website (belly breathing, the 4-7-8 breathing exercise, and roll breathing)

More for your overall wellbeing:

Thinking about wellbeing holistically - the biopsychosocial model

Another perspective on thinking about wellbeing holistically - Te Whare Tapa Wha model

Self care self-evaluation (find out where you’re starting and get ideas for how to do self care)

How to make a self care checklist

The Bedbound Activity Masterlist: Part 1 by Sky Stanton | Part 2 | Part 3

'Writing Through Chronic Pain and Fatigue: How It Can Ease Stress' by Irene Roth on fibrosupportnetwork.ca

'Journaling as a Path to Emotional and Physical Healing for Fibromates' by Irene Roth on fibrosupportnetwork.ca

Endorphins: The Brain's Natural Pain Reliever on Harvard Health Publishing

Endorphins: What They Are and How to Boost Them by Cleveland Clinic

Cooking (and baking):

Epicurious Expeditions is a YouTube channel and Instagram full of accessible recipes – recommended via this Tumblr post

Tips for baking with hand pain

Tips for baking with brain fog

(plus check out the book recommendations section below for low-energy recipes)

Mobility aids:

'Fibromyalgia & Chronic Fatigue Syndrome Mobility Aids' by Adrienne Dellwo on Very Well Health

A post where I collected a bunch of resources on canes and how to use them

Tumblr posts and tags (that didn't fit in other categories):

This post is a template for emailing professors to get accommodations

This post by @hellyeahsickaf has links to blog articles that are basically a guide on how to be disabled. It will be most helpful to people in the USA but there's useful advice and ideas for everyone. Also, it is primarily aimed at ME/CFS but there's stuff for all disabilities.

All of the notes I've taken from readings and workshops are tagged as 'FibromyalgicAF notes'

Book recommendations: (not all my recommendations; some have been collected from other people)

'The Fibro Manual' by Ginevra Liptan

'The Way Out' by Alan Gordon (with Alon Ziv)

'Crip Up the Kitchen: Tools, Tips, and Recipes for the Disabled Cook' by Jules Sherred

'The Life-Changing Magic of Not Giving a F**k' by Sarah Knight (this is not a book about fibro but it's a great book for learning to let go of things that don't matter and spend your energy on things that do)

'How to Keep House While Drowning: A gentle approach to cleaning and organising' by KC Davis (recommended here)

App recommendations: (not all my recommendations; some have been collected from other people)

Finch (work towards goals and take care of yourself as you take care of a digital pet) – Android | Apple

Water Reminder (track water intake and get remindees to drink more) – Android | Apple

Guava (meds tracking and reminders, symptom tracking) – Android | Apple

MyTherapy (meds tracking and reminders, symptom tracking) – Android

Bearable (track symptoms, mood, period, and meds) – Android | Apple

Daylio (track mood and goals) – Android | Apple

Visible (track activity, manage pacing, budget energy, and discover what might be making symptoms better or worse) – find out if you qualify (not available in every country)

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🟣 If you have a resource you think belongs on this list, drop a link in the comments or send an ask (anons are always open).

🟣 If there's a fibro-related topic I've completely missed, I'd also appreciate hearing from you in the comments or via ask.