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]

Yes please

@Akire

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

I've had the mammoth form to fi in stating that my lifelong illness is still no better. But feeling guilty filling it in as some days are 'ok'. I have been told there will be no face to face assessment this year. Have you?

*fill

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.

I’m not due for a few years now but have had plenty of letters of doom to keep the memory fresh. The problem is you spend most of your day (well I do) trying make the best and finding hope in little things. You train your brain be happy with less. Your expectation of what you should be able to do, is totally distorted. Unless your good days are amazing they are probably still less than the old you and then only because you didn’t do x y z the days before.

@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.

Yes! But until you said that I hadn’t connected the cold with how bad I’ve been the last few days. Daft cos it always happens. Have fibro, OA in my knees, IBS and endo that was supposedly going to die down after menopause. Yeah right.

@Akire

I’m not due for a few years now but have had plenty of letters of doom to keep the memory fresh. The problem is you spend most of your day (well I do) trying make the best and finding hope in little things. You train your brain be happy with less. Your expectation of what you should be able to do, is totally distorted. Unless your good days are amazing they are probably still less than the old you and then only because you didn’t do x y z the days before.

I hate it. I am waiting on results on my knees and left hip to see if I am able to get them replaced. I've already had my right hip replaced. I'm only 30. If I was able to get all my shitty joints replaced I'd happily DWP that I dont need their PIP payments anymore. Isn't life crap. I just want to be able to do normal shit. Like kneel down and be able to get back up again or tie my hair up in a pony tail.

That’s one thing I’ve found really tough with lock down. Sudden concern for everyone mental health, not going out or seeing people, just having everything you want a big fat no. But if you have had years and years and nobody cared much.

This came up on my YouTube recommended last night

I’d be interested ☺️ I have fibro, sacrial joint dysfunction and arthritis. I fell and landed on my crutch recently so I’ve also got a bum wrist lol

Fibro, EDS, and flare ups of frozen shoulder (adhesive capsulitis) here.

Me too. I've got chronic pain and reduced mobility resulting from injuries in a car crash a few years ago. Currently weighing up the pros and cons of further surgery but scared of ending up worse - which nobody around me seems to understand.

Yes please

I applied for PIP several years ago. I got zero points despite the assessor coming across as sympathetic to my struggles. The whole system of PIP is completely flawed. The criteria is shockingly bad too as being able to do a lot on their list doesn't mean someone can hold down a down. It's utterly crap. Hope you're able to get it @LST.

@StealthRoast yes! The cold makes everything so much worse. I find a short daily walk normally helps my pain levels but not at the moment, it's too cold.

Yes I would. Constant Nerve damage pain after c section and long term neck issues that causes horrific migraines.

Yes please, multiple chronic conditions here and any help and hints to help pain control would be welcome.

A chronic pain would be so useful, that's a great idea.

I have osteoarthritis, been on medication for 25 years. I have constant fatigue, brain fog etc but I can never get a diagnosis of why. I know that a label wouldn't help me feel better but it would stop me feeling so dispirited I think. My son has ankolosing spondylitis and he said knowing that has helped with getting some support at work.

Long Covid19 has made things 10 times worse can I join please?

I am sorry so many of you are in constant pain

May I recommend the Benefits and Work website for PIP advice? I find it invaluable (and I haven't paid the 20 quid to be a member - I just use the free stuff).

If we do get a board, it would be good to have a 'PIP Chat' thread?

Also I'm happy to collect and collate acronyms for an 'Acronyns & Abbreviations Sticky' if people would like to post them up or PM theirs to me. 👍

So the ones relevant to me, for example, include:

PsA = psoriatic arthritis
OA = osteo arthritis
ARF = arthritis related fatigue

Yes

That would be great @TheLaughingGenome, thank you. Relevant acronyms for me:
IBS (Irritable Bowel Syndrome - most people are aware of this one but you never know)
HSD - hypermobility spectrum disorder
Also sometimes lumped in with hEDS in discussions although there are slight differences - Ehlers Danlos Syndrome hypermobility type.

If any others jump to mind I'll let you know

Thanks, OP. And I'll separate out 'conditions' from 'medications and therapies' if that sounds ok?

PoTS - postural tachycardia syndrome (also sometimes known as POTS - postural orthostatic tachycardia syndrome) :)

Had a total crash yesterday while trying to declutter. Was more brought on by mental fatigue than physical, I just suddenly couldn’t think anymore. Knackered today.

Yes, this would be really good. Have fibromyalgia. It's awful. Always in pain of some degree. Bad at the moment due to cold weather. Any advice on pain management would be so helpful. to all fellow pain sufferers.

I would definitely read, and post from time to time. OA in hips and spine, osteoporosis fragility fracture in spine, migraine, persistent orofacial pain, fibro. Hell on earth some days, very depressed by the direction of travel! Would be interested too in posting about the impact of pain on mental health and vice versa. For example, I'm EUPD and struggling to find an antidepressant that doesn't make my bones break more easily! But very aware at the moment that I'm being quite borderline in some situations, and quite isolated (live alone) which hasn't helped.

Very moved by all your posts, can be such a lonely way of life 🤗

I'd be interested too. I don't remember a time I wasn't in pain. No diagnosis though.