Would anyone be interested in a chronic pain board?

[DunravenBadger]

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]

There is special needs Chat but no one is ever there. I know fine line between what people consider a disability and chronic illness. (I have both) I nearly started a thread as so hard when everyone is making big plans for the future or even small exciting plans and changing their lives. You know it’s pain pain more pain and getting up and doing all over again!

Yes I think it's a great idea

I think it's a good idea. I've been crumpling under the weight of chronic pain recently and while people have been lovely and kind and supportive on here, I've really really appreciated their kind words and advice, a more focused area would be great.

Sounds like a great idea, I have osteoarthritis

@fairycakesandtea7 me too it's miserable

Omg yes. There are a million and one topics on here but not this one and it seems to affect so many of us sadly.

I have fibromyalgia too and a few other issues. It affects every area of my life and I would love to hear from others and swop advice and support.

@StarCourt it really is! I'm only in my mid 20s too :(

I would be very interested. I suffer from osteoarthritis and at only 40 am currently too unwell to work. I've been going through a really down time lately and it would be 'nice' to talk to other people who understand what living with chronic pain is like.

Osteo, EDS, probably fibro and menopausal. Not a great combination, I was fine 3 years ago some chronic pain but intermittent not the debilitating constant levels I have now. Others get bored of hearing about pain and crippling fatigue I find. They don’t understand that there is no “fix”

Hi I'm another Osteoarthritis- had right hip replaced waiting for left one. Also degenerative spine n knackered knees- I'm 44 - sick of the pain n pain meds n feeling useless - sorry to moan

Yes I would. I've tried a thread on this before but never knew where to post it

Yes I would.

I’ve got longterm SPD, SIJD, Hypermobilty, chronic migraines, osteoarthritis and fibromyalgia

According to google 28 million yes million people live with chronic pain the UK. Pain lasted more than 3months.

Number of vegans 600k (nothing against vegans but they have own board!

I'm now 30. I was diagnosed with RA when I was 16. I have had 1 hip replaced and am currently on a waiting list for my elbow. I have recently had x rays for my knees and other hip. So fingers crossed they are bad enough for another replacement as I cant cope with how shite my mobility is at the minute. Especially with 2 young kids

I'm interested - even if it was just a thread. I have endo, post-traumatic arthritis, back problems and a non-healing hip accident from 5 years ago.

Yes please xx

Yes please. Have been on chronic pain management for 7 years now.

I'd be interested too. Fibromyalgia here as well.

Are we using this thread as a chat between us until a board is created? I'm having a bad day.. I've had my PIP assessment through the post.

Oh no we have all been there with letter of doom. Is it the results or the actual form or appointment?

I’d definitely use such a board :) CFS, fibro and PoTS here

Re: PIP. I have decided to finally apply. I dread it all but I’m not working due to my conditions and am getting worse. I’m 43.
Have 2 dc. Dd is 10 tomorrow and ds is 18 in 2 weeks. He has Aspergers and anxiety and when he moved from DLA to PIP when he was 16 it was a horrendous ordeal and I wouldn’t attend the assessment now without recording it. Then they can’t lie or deny.

Luckily for us, when refused PIP and got ZERO points I did a MR which was a waste of time and told them I would be appealing. Put together really good appeal case. Out of the blue a week before Christmas that year ( around 6 months after the initial assessment) we got a letter saying they had “changed their mind” and this time was awarded 27 points. Quite a difference!
I would encourage anyone to appeal if they are refused. The odds are high and I believe we would have won anyway at a tribunal and that is why they decided to award it.

Appeals are upheld around 90% of the time. Always appeal. Anything else that had such a high failure rate would be changed.

Yes please for the board.

I looked at the PIP criteria and I don’t come under any of their criteria. I’m better if I’m more mobile and the activities which worsen the pain are driving and sitting - I can foresee that I’ll have to give up my job as a result as it is peripatetic in nature.