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Original poster

Would anyone be interested in a chronic pain board?

343 replies

DunravenBadger · 10/02/2021 18:11

Hi all,

I posted in Site Stuff but MN have recommended I post here. I've seen a couple of threads about this where MN have said they're "interested" in what's being said but nothing ever comes of it. Sometimes posts get lost here in general health and chronic pain / limited mobility doesn't come under "special needs". I thought it would be good if we had a specific board.

Would anyone be interested if MN set up a board specific to chronic pain (or similar if anyone has any alternative suggestions?

[Title edited at OP's request]

OP posts:
Original poster
DunravenBadger · 10/02/2021 18:12

Sorry, meant chronic pain board, not thread. I'll see if MN can edit my title.

OP posts:
Wolfiefan · 10/02/2021 18:17

I have fibro. Always looking for things that help!

LST · 10/02/2021 18:18

I have RA. I'd be really interested!

longtompot · 10/02/2021 18:30

My ed has CRPS so I'd be interested in ways to help her, and if people hear of new treatments.

Bilson · 10/02/2021 18:31

I would be interested.

InglouriousBasterd · 10/02/2021 18:33

Yes! Fibro here too.

Original poster
DunravenBadger · 10/02/2021 18:53

I'm glad there's a few of us interested, though sorry you all have chronic pain too. I should have mentioned in my OP, I have hEDS / HSD (hypermobility).

OP posts:
longtompot · 10/02/2021 20:29

Also, my yd has JIA/RA along with hyper mobility.

TheLaughingGenome · 10/02/2021 20:35

I have inflammatory arthritis. It's been a hard road.

TaraR2020 · 10/02/2021 23:06

Yes please

TriflePudding · 10/02/2021 23:10

Yes please I have just been referred to rheumatology because I have suspected RA, and would find a specific board for chronic pain really helpful !

FabbyMagic · 10/02/2021 23:11

Yes I would

Akire · 10/02/2021 23:12

Yes a general living with crappy illness/pain be good. There are lots of chatty spaces for parents of SN kids but nothing really from specific questions on Living day to day.

Bandino · 10/02/2021 23:14

Yes. I've searched before but not found a thread.

user1497873278 · 11/02/2021 09:55

That would be great

TheLaughingGenome · 11/02/2021 10:26

I have sometimes felt I have been drowning not just in pain, but in the bureaucracy of the 'helpful' referrals for assessments with other services, which themselves get overwhelming as I have to repeat the same story over and over again.

I'd like to be able to talk to others who are in the same boat for advice etc.

MedusasBadHairDay · 11/02/2021 10:27

Definitely, also got HSD

TheLaughingGenome · 11/02/2021 10:33

If this does happen, it might be helpful to have a post 'stickied' at the top of the board with acronyms and abbreviations, e.g. RA = rheumatoid arthritis, PsA = psoriatic arthritis, Mx = methotrexate, that kind of thing?

Namechange600 · 11/02/2021 11:59

Yes please - endometriosis and adenomyosis possible pots and maybe eds too...

seepingweeping · 11/02/2021 12:00

I'm interested.

Original poster
DunravenBadger · 11/02/2021 13:01

@TheLaughingGenome

If this does happen, it might be helpful to have a post 'stickied' at the top of the board with acronyms and abbreviations, e.g. RA = rheumatoid arthritis, PsA = psoriatic arthritis, Mx = methotrexate, that kind of thing?
That's a great idea. It can sometimes be too easy to assume everyone knows what our various acronyms mean so a sticky would be a really good idea.
OP posts:
PaperMonster · 11/02/2021 22:19

Yes please.

weegiemum · 11/02/2021 22:44

Yes, I would. I have RA and CIDP (a rare polyneuropathy). Limited mobility and chronic pain. I never find anyone else with CIDP, but it could also be AIDP, Guillan-Barre, MMN, AMAN or MFS, all related conditions.

givemesteel · 11/02/2021 23:13

Yes, same here. Chronic migraine.

Redannie118 · 12/02/2021 19:48

I had a thread last year about the lonelyness of Chronic pain and got hundreds of replies, there is without doubt a audience for it, but I got told at the time that there was no space on the Health boards for another topic. If thats not an option how about a long running thread like the cancer one?