More than 60% of my treatment plan so far has come not from the doctors treating me but blogs on EDS, POTS & MCAS. Every time I have a mast cell reaction, I’ve started looking up options on Mast Attack, because it has practical solutions that I can use right away (after a pre-approved list was made with my doctor). Likewise, I go to Through the Fibro Fog when I need low histamine recipes or Oh Twist when I need information from the brilliant EDS Toolkit there. This is a non-exhaustive list and not in any particular order. Wherever possible, I’ve given which specialty I’ve used them for (so far). There are also some blogs that I have not used extensively but were suggested by the lovely #NEISVoid folks.
I will start with this blog, of course. https://www.apainfulidentity.com/category/chronic-illness/ – Plenty of resources on living with chronic illnesses. EDS resources are starting to be added slowly.
- https://www.mastattack.org/ (A patient handbook for MCAS)
- https://www.throughthefibrofog.com/ (Fibro, EDS, POTS, MCAS)
- https://allthingsendometriosis.com/ (Endo, EDS)
- http://somedaywewillsleep.com/
- https://www.achronicvoice.com/ (Contributor posts, community)
- http://www.onesickvet.com/ (Coping tools)
- https://ohtwist.com/ (EDS Toolkit)
- https://www.mystripylife.com/
- https://livewithcfs.blogspot.com/ (Finding a doctor & help with diagnosis journey)
- https://www.holy-shit-i-am-sick.de/en/ (EDS Patient journey, general news updates, coping tools, in German and English)
- https://chroniccarenurse.com/ (nursing perspective)
- https://murraymeetze.com/
- https://invisiblenotbroken.com/blog-chronic-illness-blog
- https://www.healthrising.org/ (MCAS & PEM resources)
- http://flexabilityandcreativity.blogspot.com/
- https://ditispots.nl/ (POTS blog in Dutch)
I am a burned out international lawyer & mother with Fibromyalgia and anxiety, trying to re-discover my identity.
