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]

@PinkPlantCase people's comments can be so frustrating and sometimes hurtful.

Oh gosh re heat. I try and be careful but yeah sometimes the neck wraps can feel quite hot. Doesn't seem to have too much of a detrimental effect then which is good.

How is everyone doing today?

Hi @DunravenBadger I’ve only had 3 hours in bed and feel terrible. I have chronic insomnia too and this has improved recently for the first time in 3 years and then the last few days has gone back to waking up at stupid o’clock.

I went through a phase of using the deep heat patches on my back but was becoming reliant on them so just stopped. I feel like my back needs to crack. My pain has always been mainly my legs with a few flare ups every year with my back but this one has been about 6 weeks now and the pain is unreal.

On a positive note the weather is much milder here so hoping it continues and am hoping that the dc go back to school and college in a few weeks as I need some me time which sounds bloody selfish but it’s true! They’re great kids and in year 5 and year 13 but it’s the constant demands for food/drink/anything else that drain me.
We also have a 5 month old husky puppy who is teething but luckily since my back has gone my ds and dp have done the vast majority of his 3 daily walks.

Sorry that was long. How is everyone doing?

Yes please - ME/fibro/hypermobility here.

Have you taken any paracetamol 🤣🤔 love that one

The one that always gets me is, "have you tried [exercise]?"

I can barely walk, just doing household chores is agony and you expect me to take up running?!

My IBS flared up at 3am. Which means no sleep. I can feel my joints flaring up now too. I've had to stop my Adalimumab injections to get the covid vaccine.

What gets to me is when I'm having a really hard time and friends use my hard time to download all of their ailments and pains at me. Sometimes it's an attempt at solidarity, sometimes it feels very invalidating, especially as I tend to not have the words to explain how terrible I feel, so keep quiet. I don't want to invalidate their pain which is also real and horrid and I don't want to push them away. But I do want to be heard just sometimes before it all builds up and I self destruct.

I was really losing the plot very recently with lack of sleep and pain that interferes with basic tasks like dressing and cooking. I couldn't stop crying, had given up on basic self care, which is not me. I'm normally very stoical, which is how I get into pickles where suddenly, but rarely, I cant cope. But I was told by a close friend that I must be ok because my skin looked good. They spent the rest of the time talking about their ailments. It had a really bad effect on me, I withdrew further from everyone.

Its a bad pain day today, but mentally I'm doing ok.

Maybe one thread can be stupid things people have suggested to you..

I like lots of other people have few conditions with pain so it’s a constant round of one up, one down, all up. Sometimes it feels like a holiday when something been awful for a week calms down enough for something else to take over in pole pain position. It actually feels like a break

@OhYouBadBadKitten It is awful when you don’t have anyone to unload too. There is a need to be able to say how it is without it turning into a competition. It’s never just the pain it’s the never ending getting through today and doing all over again tomorrow on an endless loop. It does change you and think it’s unwise to try and pretend it doesn’t. That’s not giving in just realistic.

I can empathise OhYouBadKitten. "You look well" is such a loaded comment. People, on the whole, are very dismissive of problems that they can't actually see. I often feel that I can't win. If I am having a good day and manage to function fairly normally then apparently I "can't be that bad" but if I have a bad phase then I need to make more effort and be more positive.🙄 I even find I myself kind of writing disclaimers on my social media posts of I write about doing things - especially if I dare look happy! Like I went for a bike ride a few days ago and met some old work mates who made a few slightly barbed comments. So, with the expectation that I would be talked about I put a picture on Facebook with a comment about how much I'd enjoyed it but hoped I wouldn't suffer too much next day, and how my surgeon, physio and psychologist have all recommended that I do more cycling etc etc. Then I get angry with myself for giving in to that kind of pressure and feeling that I have to justify myself to people who have no right to judge me. It gets wearing though. And yes, the inane suggestions get right up my nose too. I've seen multiple specialists and read extensively about my conditions so I really don't think that Julie behind the counter in the Post Offfice is likely to have the secret cure that nobody else knows about! I know people mean well, but sometimes (well, often!) I wish they would just leave me alone!

OhYouBadKitten Sending gentle hugs. I had a colleague who used to try and one up you if you talked about anything, and pain was no exception. It could be really upsetting, especially if I'd hit that wall.

Anyone else find the guilt when it's a rare good day hard to deal with? Like you should be struggling more?

I totally get you on that point about having to put disclaimers on sharing good days MrsA. I want to be able to tell people about the fun things I've done - I don't want to be that person who only talks about how crap life is. But I feel judged. Questions in my head are things like: 'do I share the picture of the amazing mocha cake I made today, that I'm really proud I managed despite the pain, by adapting how I do things and taking all morning to make it'.

It just feels like another separation doesn't it - like our conditions define us. I don't want to be known as OYBBKWhoHasPsoriaticArthritisPoorHer. Or OYBBKLetsJudgeAndLimitHerFurther. I want to be known simply as OYBBK.

And people can fuck right off with suggestions of Turmeric tea and oily fish. I've tried it all. (Even though I know it comes out of a sense of wanting to help and kindness and I would never ever tell someone trying to help to fuck off)

It is So Nice to be on a thread with others who get it. And this @MNHQ is why we really need our own board please.

Cross post with you Medusa, the guilt just adds to it doesn't it. I don't feel guilty per se, but if I'm walking into town and I get spotted by someone I know, I feel like I've been caught being naughty.

Please count me in. Sjogren's syndrome, hEDS, fibro, chronic migraine and potential PoTS here too. Don't normally talk about it in real life, so would be lovely to have a specific place on here to share and get advice.
Fatigue is getting me down more than the pain at the moment though

@OhYouBadBadKitten

Cross post with you Medusa, the guilt just adds to it doesn't it. I don't feel guilty per se, but if I'm walking into town and I get spotted by someone I know, I feel like I've been caught being naughty.

Yes definitely. Sometimes I even start to doubt myself, like am I really disabled? I've forgotten what it's like to not be in pain, so a 4/10 has me wondering if I'm just exaggerating on the 8/10 days.

Yes please.

I think part of it is that our good days are someone’s I had a rubbish day. If we manage a few hours doing things or out and about and not collapsing that’s amazing. Mean while back in the real world that’s someone taking the day off sick, and not being able to do most of what they wanted.

I do that sometimes too Medusas. Sometimes I think I'm just being a wimp and I could be at work. But then I will have a day when I have to go to bed after I've cleaned the bathroom. The unpredictability and variability of my condition frustrates me. On good days I do function quite well, but I have no idea when, and how often they are going to come, so doing anything regularly and consistently is just impossible.

I would find it really helpful...as so many have said, it's hard to talk to family and friends sometimes - people who don't have chronic pain just don't get it. I have OA, spinal stenosis and chronic neuropathic pain in my left leg

@MNHQ see we do really need a board for this!

@MNHQ see we do really need a board for this!

Hi, I would find a board like this so helpful. I have Rheumatoid Arthritis and chronic neuro issues and would find it so beneficial to chat to people who just 'get it', who understand how chronic pain makes life a daily battle. Plus the episodes of fatigue that come with it (I call them my K.O.s as it's like I've been knocked out; I can't fight them, and will often be out cold for hours.

All of this just gets me down; I can't be the mum that I want to be (dc age 6) and it has totally buggered up my career. Sorry for the doom and gloom, but it's hard to get people in real life to understand that chronic pain has such a ripple effect on the rest of your life. So a chronic pain board defo has a 👍 from me!

Yes @MNHQ, please give us our own board, it would be incredibly helpful to people who are suffering, so why wouldn’t you when there are boards for so many other things that aren’t actually life changing!

I feel like I either need to not share things or share things with a disclaimer. I've taken off most of the really good days on my social media as I feel like when I then have a flare up, people would judge me for the good days. It's so frustrating. It can be so difficult to get support from employers too that I don't then want them seeing I managed to go for a walk as well how can I do that if I'm in so much pain. I also then feel guilty yes, maybe I just over exaggerate bads or just have a low pain threshold or something.

@StealthRoast I hope you slept better last night.

OYBBK I'm sorry your friends offload and make you feel worse. It can make it very difficult to actually access support from friends when that happens.

It's actually hurting to type right now. The wrist and arm pain is getting progressively worse this week.

Have a good Friday everyone

And please @MNHQ can you look into the board? Please?

@LurkerTurnedPoster

I would find it really helpful...as so many have said, it's hard to talk to family and friends sometimes - people who don't have chronic pain just don't get it. I have OA, spinal stenosis and chronic neuropathic pain in my left leg

Very true. Next month will mark 12 years since my chronic pain started, and even though my family have seen the effect on me that whole time, they still don't quite understand. There's nothing quite like living with it.