fibro links
this is not a fibromyalgia blog, but i have lived with the condition for a decade or so, so it’s part of my life, and although i avoid fibro on the web as a rule, i do have some useful links to share. if you want to find the festival of moaning and complaints, then look up some blogging communities, they are certainly out there. i don’t recommend them, you don’t need the downer. there is also a lot of misinformation and general blind alleys. oh, wait, this guy‘s quite good.
daniel firman
i am not a doctor, and i get bored reading the sciency bits, so i am no authority, but if you just want to know some stuff i know then this is for you.
when i first suspected i had fibro i read devin’s diagnostic. ‘devin’ is a bloke with fibro who is also a DOCTOR so this gets a bit technical, but it is seriously useful. when i read his list of possible symptoms i had had nearly all of them except ones relating to male genitalia, and even then, well… i never said i wasn’t a hypochondriac and over imaginative.
nowadays there is a brain scan you can get, but you won’t probably be offered it. but, helpfully, CFS has a blood test now, which you can get for purposes of elimination. mind you, just because you have CFS doesn’t mean you can’t also have fibro. you can also get a cold or cancer or a broken leg – or all three, when you are ill you don’t get diplomatic immunity from *getting* ill.
if you are in the uk you can go to this clinic. it’s private, but unless you live in soutwark, where dr davies has his nhs clinic, i don’t know if you will find a specialist. so, it costs money, but they aren’t in it to skin you, and even contacting them will glean you a handful of useful documents.
i am about to start flupirtine which is recommended by them. it’s a fancy pain killer. one of their staff has fibro and he writes that it takes about a month for the side effects of the drug to wear off, which is news i can use, because if a drug has deal breaking side effects, well, it’s a deal breaker for me.
if you have fibro, one of the best things you can do for yourself is to learn pacing. you can go on a free pain management course on the nhs, but you will wait a while for it, probably. ‘pacing’ you can google. it’s a simple idea, but tricky to totally pull off, but even partial success will give you a break from pain.
if you have some money i can’t recommend breathworks highly enough. they do online courses, but as an ex teacher i am a big believer that getting in a room with a group is the best way to learn. check the site to see if there is a course near you.
i don’t know everything about fibro, but i am happy to talk to you if you have a specific question that can’t just be googled and isn’t plain rude. just shoot me a question in the comments of any post. all comments are screened so if you leave your email robots won’t steal it.
