chronically resourced

Sharing guides, tools, worksheets, research, book recommendations, and any other helpful info for people living with chronic illness(es) | Posting every day | Submissions/suggestions are welcome | Asks are always open | Not a health professional; please read resources skeptically and consult your doctor or healthcare provider | Tips are greatly appreciated: https://ko-fi.com/chronicillnessresourcelibrary

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Index/tagging system:

#chronic illness research (there's also condition-specific tags like #fibromyalgia research, #covid research, and more coming soon)

#for the new spoonies

#get prepared resources (e.g. what to have in your hospital go-bag)

#housebound resources and #bedbound resources

#how to guides

#how to talk to your doctor

Masterlists: #chronic illness masterlists

#mobility aid resources

#printable resources

#video resource(s)

#book recommendations | #podcast recommendations | #app recommendations | #product recommendations

You can also search by condition: e.g. Fibromyalgia, ME/CFS, dysautonomia, migraine

Reblog posts will be tagged #reblogged resource

🦋 Also posting daily on BlueSky as spoonieresources

Please note: This blog is not run by a healthcare professional; I am just another chronically ill and disabled person who wants to help connect people in my community with resources. I do my best to make sure I am only sharing accurate information and trustworthy sources, backed by science wherever possible, but it is possible I have missed something or made a mistake. Please read the information shared on the blog skeptically and seek advice from a medical professional before changing your medications, starting to use a mobility aid, or making any major lifestyle changes.

Asks are welcome! Suggest a topic...

...or submit a resource (you are welcome to send in any links or materials you have; it doesn't have to be in any particular format).

You can support my efforts and help me pay for the subscriptions that keep this work going by tipping me via Ko-Fi

More links: linktr.ee/chronicillnessresourcelibrary

Profile pic / logo by NEYOVO

[spoonieresources]

I've jumped onto Substack as well!

Intro: What is CIRL and who's behind it?

The mission driving the Chronic Illness Resource Library and a little intro to the person behind the keyboard. (This isn't just for spoonies

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Hey y'all,

As I mentioned last week, I'm expanding Chronic Illness Resource Library! I decided to start with adding BlueSky to the mix so if you know someone who doesn't do Tumblr or who is more active on BlueSky, the link is below:

Chronic Illness Resource Library (@spoonieresources.bsky.social)

Sharing fact sheets, how-to guides, online tools, worksheets, research, books, podcasts, and any other helpful info for people living with c

I'm also looking into SubStack for phase 2 so keep an eye out here for future announcements on that.

In the meantime, thank you to everyone who has provided input or sent encouragement! And I'd like to invite you to send me any feedback you have about CIRL (all feedback, positive or negative, is useful); asks and DMs are open or you can drop a comment on this post ✌️

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Another little update...

I've launched a Ko-Fi page for CIRL so if you have a dollar to show your support for my efforts, you can drop it in the tip jar here 🙏. These tips will go towards paying for subscriptions and services that help me do this work.

Adding Substack to the mix is still on the cards but I plan on keeping all my posts there free-to-access — chronically ill people don't need any more pay-walls getting in between them and important information — so this Ko-Fi will likely continue to be the only way for people to support CIRL.

I hope it goes without saying but, just in case, there is absolutely no pressure to send a tip. As a chronically ill and disabled person, I know how tight money is for most of the community, so there is no expectation. But if you have a spare coin and you want to send it my way, it will be helpful and I will be very appreciative! ✌️

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Preventing and Dealing with Migraines

For people new to migraines or who want to make sure they've covered all their bases, this article by the Mayo Clinic runs through a bunch of things you can do to reduce the number of migraines you have and lessen the pain when one does appear:

Migraines: Steps to head off the pain

Learn how these self-care strategies may lead to less frequent and less severe migraines.

(and this webpage is archived here)

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Some of the tips in this resource:

"Try temperature therapy. Apply hot or cold packs to your head or neck. Ice packs have a numbing effect that may ease pain. Hot packs, heating pads, and warm showers or baths relax tense muscles."

"Sip a caffeinated drink. In small amounts, caffeine may relieve the pain of a migraine as it starts. Caffeine also may boost the effect of acetaminophen (Tylenol, others) or aspirin in easing pain..."

"Aim for regular sleep hours... If you nap during the day, keep it short. Naps longer than 20 to 30 minutes can make it harder to sleep at night."

"Create a peaceful sleep space... Try to avoid watching television or using a computer in bed. If your sleeping area has a door, closing it at night can help. Try using a fan or other soothing sounds to muffle outside noise."

"Don't try to force sleep. The harder you try to sleep, the more awake you'll likely feel. If you can't fall asleep, read or do another quiet activity until you become drowsy."

"Check your medicine. Medicine that contains caffeine or another stimulant, including some medicine to treat migraines, can make it hard to get to sleep."

"Manage your time wisely. Be realistic about what you can get done, both at work and at home. Ask for help when you need it. Break down large projects into smaller, more manageable steps."

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Shout out to NEYOVO for creating CIRL's new logo!

They were great to work with, and listened to exactly what I wanted with the new branding! Go check out their website – www.neyovo.com – they do graphic design, copywriting, brand development, and SEO strategy!

[fibromyalgicaf]

To anyone thinking that you can't have another disorder/illness/disability because you already have a diagnosis of fibro or to anyone who's heard this idea that you can have "too many" diagnoses...

It's quite common to have comorbidities with fibro. One study estimated approximately 68% of people have at least one comorbidity.

And another study found that just over half of us have seven or more comorbidities!

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What is Allodynia?

"Allodynia is feeling pain from things that don’t usually cause pain. For example, a feather could touch your skin and it hurts instead of feeling soft. You might also feel pain from: Wearing clothing. Someone gently tapping your shoulder. Temperature changes. Allodynia is a type of nerve pain (neuropathic pain). This is usually a symptom of conditions like diabetes, shingles, fibromyalgia [and six more]..."

Allodynia: Why Does Everything Hurt?

Do things that shouldn’t feel painful cause pain like brushing your hair or feeling a light touch? It could be allodynia. Learn more here.

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[NEWS/RESEARCH] Inhibiting a Master Regulator of Aging Regenerates Joint Cartilage in Mice

A Stanford Medicine-led study found that blocking a ‘gerozyme’ reverses cartilage loss in mice and human tissue. This could be a game-changer for osteoarthritis!

Inhibiting a master regulator of aging regenerates joint cartilage in mice

Osteoarthritis due to aging or injury affects 20% of the U.S. population. A Stanford Medicine-led study found that blocking a ‘gerozyme’ rev

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SURVEY: COVIDs Impact on GI

With the help of patients, caregivers, and our Industry Council, IFFGD* has created a survey to gain insight into the impact COVID-19 and the pandemic has had on the Gastrointestinal (GI) Illness population. We hope this will assist healthcare providers, law makers and industry partners on the future care of patients.

*IFFGD = International Foundation for Gastrointestinal Disorders

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Beat the Heat: Coping with Hot Weather

For the those of you in the Northern Hemisphere, here are a few reminders on how to cope with summer from an FMA UK volunteer...

"Our bodies often struggle with temperature regulation, and heat can worsen pain, muscle tension, fatigue, and cognitive symptoms. Factors such as nervous system sensitivity, dehydration, and poor sleep all play a role."

"Staying Cool Indoors Creating a cooler indoor environment can make a big difference. I close curtains or blinds during the hottest part of the day to keep rooms shaded. Positioning a fan carefully, or placing a bowl of ice in front of your fan can create a simple cooling effect. Lukewarm showers or baths can provide quick relief. During heatwaves, I take cooler showers and sometimes run cold water over my wrists or ankles, where blood vessels are close to the surface. Dunking feet in a bowl of icy cold water can work wonders too. Cooling products such as cooling towels, gel packs kept in the fridge or freezer, and cooling pillow inserts all have their place. I often use a cooling mat that I bought for my dogs and keep gel packs in the freezer and wrap them in thin towels to use on particularly painful areas. Hydrate Staying hydrated is vital, but I’ve learned that little and often works best. Sipping water throughout the day is gentler than drinking large amounts at once, and room-temperature water is often easier on the body than ice-cold drinks. When it’s hot, we lose electrolytes through sweating. Adding a pinch of salt to water or occasionally having a low-sugar sports drink can help maintain balance, as long as it suits you. Adapting Your Daily Routine Timing really is everything. I plan activities for early morning or late evening whenever possible and avoid physical exertion during the hottest part of the day. My dogs are walked first thing in the morning and again in the evening, usually for shorter walks than usual. Clothing also matters. Loose, light-coloured clothes made from breathable fabrics like cotton or linen help keep heat from building up and reduce discomfort. Managing Outings and Hot Nights If I need to go out, I plan ahead with cooling strategies such as a handheld fan, a cooling towel, and a hat are staples. Just as important is knowing my limits. Saying no to outdoor events or leaving early can help avoid a crash because pushing through heat often leads to days of increased pain and fatigue. Hot nights can be especially tough. I sleep with a fan right beside the bed and try to create a cross-breeze with open windows. Listen to Your Body Above all, listen to your body. If heat worsens your symptoms, it’s ok to rest more, cancel plans, or slow down. Fibromyalgia is challenging enough without the added pressure of coping “normally” during a heatwave. Be kind to yourself, use what works for you, and remember that cooler weather will come again."

[covid-safer-hotties]

You need to wear a mask, Debunking Long Covid gaslighting, Virus in the vents, Ebola rising, and more

Bonus Hantavirus play by play!

A frequently informative newsletter you should follow. This edition has a heap of news and scientific sources about the current Ebola outbreak.

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[NEWS] Myasthenia Gravis and Pregnancy

"Being pregnant does not increase the risk of hospitalizations for women with myasthenia gravis (MG), a study in Sweden found. Findings also indicate that the risk of MG-related hospitalization is not significantly increased after birth. However, for the minority of patients who are hospitalized during this period, these hospitalizations tend to be longer than hospitalizations before getting pregnant."

Study has 'wonderful news' for MG patients considering pregnancy

Being pregnant does not increase the risk of hospitalizations for women with myasthenia gravis (MG), according to a new analysis.

(and here's the link to the study discussed in the above-linked article)

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I'm running this poll again now that this blog has more followers...

What topic would you like to see more about on this blog?

the causes/origins of (various) chronic illnesses

mental wellbeing in relation to chronic illness

chronic pain (and how to deal with it)

fatigue (and how to deal with it)

how to cope with chronic illness in general

something else

Remaining time: 2 days 16 hours

If you feel comfortable doing so, please jump into the comments and let me know what questions you have around these topics so I can better focus my searches ✌️

As always, asks (including anons) are always open for requests/questions

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Managing Multiple Chronic Conditions: What Actually Helps

"Managing multiple chronic conditions is harder than managing one because you’re dealing with conditions that interact, treatment plans that sometimes conflict, and a baseline that shifts. What helps: understanding each condition individually rather than treating everything as one problem, being direct with your support network about what you actually need, simplifying your routines around real capacity, using adaptive tools without guilt, and actively noticing when things go well. None of it is a cure. All of it makes the day more workable."

Managing Multiple Chronic Conditions: What Actually Helps

Managing multiple chronic conditions isn't just harder than managing one — it's a different kind of problem. When your diagnoses interact an

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Arthritis Medications And The Sun Can Interact

Note: this resource is written by a NZ-based organization and is primarily aimed at people in Aotearoa NZ (where the ozone layer home makes the risk of sun damage much higher) but this is still crucial information for anyone on medications for arthritis and inflammatory conditions.

"The interaction of inflammatory arthritis (such as rheumatoid arthritis, psoriatic arthritis and other forms of spondyloarthritis), medications to control arthritis and sun sensitivity is not always clear, and the reactions between medications and sun vary; • NSAIDs, such as Naproxen and diclofenac, can make you more sun sensitive as can Sulfasalazine/ Salazopyrin. Hydroxychloroquine can increase light sensitivity and vision changes. • COX-2 inhibitors like Celecoxib can cause irritation, with a breakout in rashes... • There is an increased risk of non-melanoma skin cancers (NMSC) for people being treated with DMARDs such as methotrexate and some biologic therapies. These medications also increase the risk of NMSC recurrence. • Methotrexate can irritate the skin where sunburn has occurred previously... • Long-term corticosteroids thins the skin, making it more likely to burn, and more susceptible to wrinkling and thinning of the skin (skin atrophy)."

Arthritis, medication, and the sun

The interaction of arthritis, medications to control arthritis and sun sensitivity is not clear, and reactions between medications and the s

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Reblogging for the Northern Hemisphere summer

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🌈 Happy Pride month!

To my fellow spoonies out there in the LGBTQIA+ community, I hope you manage to find a little extra energy to celebrate and commemorate this month! Sending you good vibes ✌️

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Managing Dislocations and Subluxations in hEDS and Hypermobility Spectrum Disorders

This article on EDS UK's website covers what dislocations and subluxations are, why they occur, how to manage them, and when to go to the hospital...

Managing dislocations and subluxations in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders

Joint dislocations and subluxations can commonly occur in people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum d

‼️ Reminder: I am not a medical professional and this resource (as with all the resources shared on this blog) does not replace professional advice and guidance. If in doubt, consult your doctor.