- Joined
- Sep 5, 2020
- Messages
- 3,161
- Reason
- DX FIBRO
- Diagnosis
- 02/2020
- Country
- DE
Researching docs and support groups in Leeds just now duckduckgo pointed me to... this site! (No I don't ever use the nosy search engines.)
Just goes to show that we don't even know all the great resources there are here. In the "parlour", if this is the living room and the kitchen? (OK: I didn't know ANY of this was here...). I think it's worth looking, even for newbies, experts, and old hands.
But so you can decide when you want to have a look, I'll give an overview:
So let's explore: Go to the homepage of fibromyalgiaforums org.
(If you don't want to cut the URL you can find "Home" not at the top but in the bottom right hand corner of all? webpages.)
You'll find fibromyalgia doctors, if you click on the link, or at the bottom of the homepage or under "Get help" in the menu there.
17000+ in the USA, 422 in Canada, 6 in the UK, and none in Germany (it says one, but then there isn't one), none in Portugal. So lucky you @Lizzeedee, who got me on to this: 6 in the UK, and 2 of them are around the corner.
In these 3 ways you can also find a few support groups there. 2 in the UK, and one of them is in West Yorkshire (in Selby) - lucky Lizzeedee again. (20 in the US, 8 in Canada). A bit exaggerated to call this a support group directory at the moment, 'bout time we filled it up (let's add support group entries if you know of any).
Then you have the resources "Treatment", "Definitions", "Terms", and the best ones I think are "Facts" and "Coping".
"Treatment" gives a bit of an overview for newbies. If you click (not hover) on "Definitions" that only shows FMS and CFS, while "Terms" only has very general medical terms, important ones for fibromyalgia like central sensitisation (syndrome) (CSS) aren't included, the only term under A which is particularly relevant for us is allodynia, under C: cytokines and chemokines.... If you'd click on "Research" on the left hand side, fibro terms are as yet missing.
Under "Facts" there's a nice overview, with a few specifics on the left, e.g. diets (which links to several relevant forum threads), and links to 4 interesting articles it uses, plus it interestingly uses the term "Pain tracking" for what I've always been calling "pinpointing", including Tools. This is also linked if you go on "Coping", with several items on the left hand side: accepting, fog, positive attitude, again diet remedies (but this time: 9 'commandments', suggestions actually), strength training.
Wow! Who put all that together?! Let's help!
Just goes to show that we don't even know all the great resources there are here. In the "parlour", if this is the living room and the kitchen? (OK: I didn't know ANY of this was here...). I think it's worth looking, even for newbies, experts, and old hands.
But so you can decide when you want to have a look, I'll give an overview:
So let's explore: Go to the homepage of fibromyalgiaforums org.
(If you don't want to cut the URL you can find "Home" not at the top but in the bottom right hand corner of all? webpages.)
You'll find fibromyalgia doctors, if you click on the link, or at the bottom of the homepage or under "Get help" in the menu there.
17000+ in the USA, 422 in Canada, 6 in the UK, and none in Germany (it says one, but then there isn't one), none in Portugal. So lucky you @Lizzeedee, who got me on to this: 6 in the UK, and 2 of them are around the corner.
In these 3 ways you can also find a few support groups there. 2 in the UK, and one of them is in West Yorkshire (in Selby) - lucky Lizzeedee again. (20 in the US, 8 in Canada). A bit exaggerated to call this a support group directory at the moment, 'bout time we filled it up (let's add support group entries if you know of any).
Then you have the resources "Treatment", "Definitions", "Terms", and the best ones I think are "Facts" and "Coping".
"Treatment" gives a bit of an overview for newbies. If you click (not hover) on "Definitions" that only shows FMS and CFS, while "Terms" only has very general medical terms, important ones for fibromyalgia like central sensitisation (syndrome) (CSS) aren't included, the only term under A which is particularly relevant for us is allodynia, under C: cytokines and chemokines.... If you'd click on "Research" on the left hand side, fibro terms are as yet missing.
Under "Facts" there's a nice overview, with a few specifics on the left, e.g. diets (which links to several relevant forum threads), and links to 4 interesting articles it uses, plus it interestingly uses the term "Pain tracking" for what I've always been calling "pinpointing", including Tools. This is also linked if you go on "Coping", with several items on the left hand side: accepting, fog, positive attitude, again diet remedies (but this time: 9 'commandments', suggestions actually), strength training.
Wow! Who put all that together?! Let's help!
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