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]

EUPD, that's emotionally unstable personality disorder? Does that read right to you, @baroqueandblue?

I was at a very low ebb last summer, with the pain, before I was started on Adalimumab. The mental health elements of chronic pain might be 'recognised' in theory, but there are no holistic solutions on offer that actually operate across the various NHS departments / services.

It's a shame because patients could have been helping to shape these money-saving services for decades.

@TheLaughingGenome indeed.

I have chronic anxiety and OCD ( diagnosed ) and can really struggle when overwhelmed. My pain seems to go through the roof. I also was diagnosed with ADHD last year aged 42! I have obviously had it my entire life and learned to mask it. Everything is just exhausting.
Been waiting over a year to see someone at the ADHD clinic and finally received an update that I am top of the list for an appointment as have been waiting so long and have not been offered any medication (unsure yet whether I will have it) or any other support.

There is definitely a huge link between poor MH and pain. I just need to figure out where I fit

So glad this thread is filling up with posters but sad that so many suffering. Solidarity

@StealthRoast

Is anyone else struggling with increased levels of pain due to this weather? Assuming in UK of course.

Today it has been minus 11 in Liverpool and my pain has been so bad. It’s hard explaining to friends and family how bad my fibromyalgia is but I mask a lot of how bad I am! I’m just sick and tired of being sick and tired.

The cold is really fucking with my joints, I couldn't walk far before, but now it's at least halved what I can manage. I want the summer warmth back

It's expensive having the heating on enough, I know that.

Yeah I would be interested- have ms. Always in pain. Surprised more people with ms haven’t commented, though that is a good thing (for them)!

Yes please 😊

Yes please! I have Chiari malformation as well as Arthritis, 3 bulging discos, cauda equina (had surgery but left with pain), scoliosis and I’m currently being investigated for Hypermobility. It’s very very difficult for people who live without chronic pain to understand.

The temperature is driving me mad at the moment. Also having a very sore lower back which means I need to almost permanently have the heat function switched on on my office chair. Today is a fed up with pain type of day.

Does anyone know how to tag mumsnet? When I posted on site stuff they told me to flag up the thread to them when it gets busy so they can look into maybe putting up a chronic pain board. But I don't actually know how to flag it up.

@MNHQ

Yes I would

Thanks @JaneJeffer

Surely HQ can see how much we need this? Really hope it’s allowed. There are so many of us.

You'd think that wouldn't you @StealthRoast. It's been discussed before, MN say they're following the discussion but nothing ever happens. Fingers crossed though. It's been really helpful being able to come here and discuss with others going through similar.

@DunravenBadger I will message them a million times if I have to!

Just had a quick look through the topics and some of them are quite obscure/niche. This is a huge issue for so many of us and I will keep posting to keep it going. Let’s hope @MNHQ take a look at this!

Do all the niche health boards come up on active? I’m not sure which one don’t automatically. Fine line between having board for support and going in active and everyone offering advice when we all
Know how helpful that can be. “Have you tried yoga?”

Thank you @StealthRoast.

That's a good point actually @Akire. I wonder if there is anyway they could avoid it coming up in active. I've had some horrendous "advice" when asking in more general topics and people jump in - most recently was the insinuation that people in chronic pain shouldn't have DC as their DC will end up becoming child carers

That'd be an interesting thread on a Chronic Pain board - 'Mumsnet fave clichés addressed to those in chronic pain'.

Have you tried yoga?
Maybe relax more (Echoes of 'spa day')
Have you talked to your GP?
Benefits are for those who really need them, not you
Etc

Yes would love a specific board!!

Would be especially helpful to discuss pregnancy and parenting in the context of chronic plain.

I’ve seen the threads in AIBU where people come back basically saying ‘why are you having children if you’re disabled’ 🙄🙄

Yes I'd be interested

Yes please. hEDS and fibro here too.

Oh I’ve heard it all too.

A common one is “have you taken any paracetamol?” Omg you clearly have no idea.

@PinkPlantCase I think you commented on mine about TTC with chronic pain where some people started commented about why have DC and maybe you shouldn't etc.

Oh my gosh paracetamol doesn't even touch my pain! The only time I take it is in the form of a lemsip with a raging cold.

@Luxecalmeetvolupte it's nice to meet others with hEDS (although my official diagnosis is just HSD - hypermobility spectrum disorder, I do think I have some other signs of hEDS). Sorry you have it too though.

Does anyone know if there are any downsides to almost permanently using heat pads? The instructions say 4 hours max (or whatever it is, I can't remember) but I find if I then remove it, the pain increases again.

@DunravenBadger yes! That’s the one, I also had a thread asking about pushchairs when I can’t lift stuff and got some annoying comments about how am I going to cope with a a child if I can’t lift a pushchair.

Re heat, I have erm damaged the skin on my neck/the back of my head by using too much heat but that could have been from microwaving a heat pad to be too hot rather than using it for too long.

I also didn’t notice at the time when I did it, I just asked a doctor once when they were doing some nerve block injections of the area looked any different and they said they could tell I’d used a lot of heat 😂 I think the skin might be discoloured. It’s mostly in my hair line though so not particularly bothered.