AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

@Redannie118 absolutely all of what you said. I'll think of you when I'm up at 3am

To be fair the grief is the worst. I miss running so so much

I used to hate running, but now I feel like crying at the thought I can never do it again.

I think this is a great idea. My friends, family and husband say they understand but they don't really. They can't.

Being able to talk to people who do understand d would be great.

Yes please @MNHQ

It's knowing others get it. It makes such a huge difference.

I'm sure someone has added this one and I've missed it, but what about the whole thing of people trying to talk a cure into you - oh, just do more exercise. Oh, just have more vitamins. Oh, just try this alternative remedy I'm selling . Oh, just pull your socks up and try harder.

It's so exhausting.

Waves to all with solidarity and understanding.

you don't look like you're in pain

There's a reason for that in my case. My parents were, egged on by various medical professionals, abusive towards me regarding my pain conditions. And by egged on I mean told to stop "encouraging me" in my pain/so called "illness". If I cried I got bullied to stop, I remember Christmas being cancelled when I was 8 because my arm still hadn't healed and I was in so much pain and it just wasn't allowed, our family holiday was cancelled more than once to punish me. It got much much worse than that but you get the idea.

I've a very severe dental phobia. As in life threatening. Fifteen years ago I had an x-ray done and the nurse said she didn't know how I was so calm looking as I must be in agony (infections having spread to my face bones and at the time I had two active abscesses) yet that pain didn't touch my everyday pain. I still haven't had treatment for that - my last appointment I had my jaw dislocated by a dentist who claimed my jaw would just stop naturally - I've TMJ as well as severe EDS so no my jaw didn't stop. It took me almost an hour to get it back in, and, again I simply walked out and was told they couldn't believe it. I've resigned myself to it becoming sepis. Nothing I've tried has worked for the simple reason that my phobia is real; I've four teeth left, all orhers having rotted and fallen out. Part of my condition means my roots are literally in my jaw and that's rotten too - I need it all removed and bones in my face too. I cannot have General anesthetic and local doesn't work on me. Sedation lands me in hospital at the level necessary to calm me, anything less and my EDS makes treatment impossible. I tried in 2018 but the so called specialists had no idea. And that's before you get to the reason for my PTSD and effect that has on having anyone near me in a mask (yes day to day life right now is a nightmare for me).

I had a consultant dislocate both knees because "they'll just stop" and though I asked him to stop he didn't because I "looked fine". He actually gave me a form to complain because he was so distressed looking at my x-ray and damage he'd caused me. I didn't complain but I asked him not to judge someone's pain on the silly pictures they put on the walls in outpatients and a&e of faces that are bright red and covered in sweat with people screaming. Because for someone that's never going to be the case.

It would be great to be able to talk to others who suffer, real people that truly know what it’s like to live with chronic pain every day, knowing it will never get better.
In some ways I feel fortunate there are clear reasons for my pain, the need for morphine daily and not being able to eat. It must be awful not to be believed or being treated like an addict or drug seeker.
I have incredibly supportive friends and family and an NHS funded clinical psychologist to help me cope with living with it all but they will never know what it’s like to live this way.
I am careful not to bore people. On social media you wouldn’t know I’m ill and I use the precious time I get with friends (in normal times) to be uplifted and laugh when we’re together and forget about being ill.
Sometimes, especially over the past year it’s been overwhelming.
Those damn spoons. Most days I’m in the negative before I’ve even got out of bed.

@Akire

In real life people stop asking how you are because same old same old. Or you get used to hiding it because others can be less than sympathetic or you are just making a fuss.

This, a million times this. Hit a wall today, can't tell anyone in real life...

I don’t tell anyone about my chronic pain, I just assume it’s normal, even though I’m sure it’s not. I’ve never spoken to a doctor and I blame myself because I’m overweight and have a sedentary job.
Doesn’t everyone hurt when they roll over in bed, or stand up?
I dread walking even short distances.

No idea what number to put as I’ll read the thread tomorrow but:

Having to stay silent about the good times in case people assume you’re lying about the bad

I’ve been in excruciating pain solidly for 7 weeks now, before that I would have a an hour or so between bouts but my employer made me care for a disabled person in a dual handling role on my own (I use crutches to walk) and I’ve destroyed years of physiotherapy. I can actually smile through the pain and tears whilst giggling that it’s just “hay fever” playing up.

We need a topic of our own.

The spoons thing came about from a lady with Lupus - and her friend asked her to explain what her fatigue was like. They were out to eat and so she happened to have spoons nearby which she grabbed.

So it was just a random thing. I don't mind it personally - it helps people without pain/fatigue visualise somewhat at least, even if they will never understand.

I too have EDS and like many of us, was treated shockingly for many years - dismissed, accused of lying, misdiagnosed - all the usual stories.

I now have pretty bad medical anxiety. I had a phone appointment with my GP today and I was literally shaking physically while waiting for the phone to ring. They have fucked with my brain so badly I now constantly expect to be treated badly. It doesn't matter what the appointment is about or who it is.

I am left with no consultant and no care. For example my PA - the person that cares for me - gets far better medical care for her milder condition she has - than me - a wheelchair user who has a care package.

EDS just doesn't rate in the system as anything, so we are so badly ignored in many cases.

My GP wrote to the rheumatologist at the local hospital who listed they were the connective tissue specialist in the department to say I'd be diagnosed and needed someone to coordinate my care. His letter said - and I quote, "I have no interest in managing Ehlers-Danlos Syndrome."

That was it. I've been left to deal on my own ever since.

A lot just don't get EDS.

Though one who laughed and told me I'd been spending too much time with dr Google got more than he bargained for as I had the specialists number on me and got them to ring! He disappeared shortly afterwards - I suspect he lost his job (I was literally his first patient) but honestly, how thick must he have been to tell Prof Grahame (head of specialist EDS unit in London and recognised world wide) who by pure chance was in work that day, he didn't know what he was on about?! It was so funny. Prof didn't raise his voice but the rhumatologist was very clearly humiliated. The nurse was trying not to laugh as was I. We had a good laugh as she showed me out though.

What a berk!

@SingToTheSky

No idea what number to put as I’ll read the thread tomorrow but:

Having to stay silent about the good times in case people assume you’re lying about the bad

This one really resonates with me. I've mentioned it before on another thread actually - I feel that I have to put disclaimers on any social media posts where I look happy! Also, people don't understand how I can do somethings but not others. For I can't walk very far or stand for long but people think that I must be making that up because I can cycle pretty well. Of course the difference is that cycling is non weight bearing but people just don't get it. Or because I do some voluntary work I should be fit to do my old job - but we're talking 2 hours once a week and if I'm worn out the next day I can(and often do) stay in bed til lunchtime. That's a bit different to managing a full day's work, every day. You just can't win in this kind of situation, Be fairly active and you're making it all up. Don't do as much and you're really not doing enough to help yourself!

YANBU but I find reading about pain make mine and worse!

A night thread is good, I’m often awake due to pain or the adrenaline rush of two codeine doses back to back.

The worst thing for me is looking young and fit, I can exercise and even run if I’m careful (it reduces the pain longer term), but I can’t easily bend over or stand for long and it takes longer to do things so people get shitty. I’m fine most of the time, rarely take painkillers in the day, but five minutes standing is the start of agony or massive pay back at night.

And most of MN think doctors etc are infallible angels, we’re not allowed to criticise or point out that we know more than the GP about our conditions. Despite the insomnia induced reading of medical journals at 3am.

Yes!!! With bells on

Yes I am lying awake with pain from endometriosis. However I find lots of threads on here in the middle of the night about different things that takes my mind off it !

@CuntasarusRex

Oh and I have fibromyalgia, chronic migraines, cluster headaches, and trigeminal neuralgia

You’re a person like me!!! I may cry here and now. An actual human person who understands TN, (and the rest) that understands that no, it’s not just toothache. No, I’m not crying, you are!

I need a chronic pain board for that reason. For other people who take 40 odd tablets a day, who understand how it feels to have to accept that you might never have a biological child because of the pain, and that coming off the meds just isn’t an option

See @MNHQ we really good need a chronic pain board.

Do** need

It's nice to talk to people who really get it. I still occasionally get the ' you're too young for arthritis' thing 🙄. I don't think anyone can 'get' chronic pain if they don't have it, and I don't expect them to, it's why boards like this are so important

@Becca19962014

I'm so, so, so sorry your parents let you down.

My DD has EDS. Diagnosed at 15 after years of blind alleys. I thank god I'm able to advocate for her. The thought of her going through the hideous disbelief & challenges alone is the stuff of my nightmares.

Your post touched my heart. You've been so failed by the people who should have helped you the most.

I have RA and OA my shoulder is done in and I need a new one but i am only 40 so need to try and wait as they will need to redo again in about 10-15 years so now i am in limbo balancing pain and loss of function. I know this is a really superficial one compared to others but a hair and beauty thread with tips on taming your hair when you can’t blow dry and need to look decent for work or make up tips for when you have been awake since 3am and look like death. I actually stopped wearing makeup to any of my appointments as I found if i went in my work clothes and looked a bit polished my pain was dismissed.

@GlitterNails

The spoons thing came about from a lady with Lupus - and her friend asked her to explain what her fatigue was like. They were out to eat and so she happened to have spoons nearby which she grabbed.

So it was just a random thing. I don't mind it personally - it helps people without pain/fatigue visualise somewhat at least, even if they will never understand.

I too have EDS and like many of us, was treated shockingly for many years - dismissed, accused of lying, misdiagnosed - all the usual stories.

I now have pretty bad medical anxiety. I had a phone appointment with my GP today and I was literally shaking physically while waiting for the phone to ring. They have fucked with my brain so badly I now constantly expect to be treated badly. It doesn't matter what the appointment is about or who it is.

I am left with no consultant and no care. For example my PA - the person that cares for me - gets far better medical care for her milder condition she has - than me - a wheelchair user who has a care package.

EDS just doesn't rate in the system as anything, so we are so badly ignored in many cases.

My GP wrote to the rheumatologist at the local hospital who listed they were the connective tissue specialist in the department to say I'd be diagnosed and needed someone to coordinate my care. His letter said - and I quote, "I have no interest in managing Ehlers-Danlos Syndrome."

That was it. I've been left to deal on my own ever since.

Yes to the constant head fuck and no one there to coordinate your care.

I have been conditioned by the doctors not to believe myself and think it's all in my head. I do have psoriatic arthritis too but that's been in remission for years, because of this they were convinced I couldn't still be in pain. I stopped going to the rheumatologist because I lost my rag and behaved appallingly (told him to go fuck himself and walked out). I then carried on coping on my own for years, until a couple of years ago when things were going so wrong that I cried to my GP. Fortunately I saw a curious rheumatologist who finally diagnosed me, but I've now been discharged from there too. There's no one who oversees my care and each time a body part goes wrong I get sent to that specialist who doesn't understand my condition so misdiagnoses.

Sorry this is long. The point is that the accumulative impact of them consistently dismissing my pain and me not have someone overseeing my care has meant that I've now spent a year with a significant ECU dislocation which needs to be considered for surgical options. I've ignored it, because I'm conditioned to think I'm exaggerating, the wrist specialist didn't get my EDS so didn't look for more unlikely diagnoses, and now it's turned into a crisis.

I am sure this is a pattern that plenty of us can identify with (which is why we need a little optic board MNHQ ). I know I need to get my left hip sorted, but I just can't face it, I don't have the strength to argue at the moment. So I'll ignore it longer.

Tears streaming down my face reading these, im not alone, i have found people who get it. The debilitating pain, the grief of what once was, juggling life, coping, not being believed, no answers from medical professionals...
We need this board for sure.

@anormalperson I get the "you're too young" all the time. Or "wait until you get to my age". Ugh. I work with older people a lot and get that second line frequently. Of course they don't actually realise what's wrong with me but still, it's frustrating. Tbh I don't really want to think about the pain levels I may experience when I get older. It's hard enough now at times so I don't want to think that far ahead.