AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

Yes I really think it would be an excellent idea.

I've had so much really bad treatment over the many years and basically been made out to be a liar and/or exaggerating things for guess what - pain meds!!

Luckily now I have a wonderful pain dr who a previous dr who thought I was imagining all the pain and making it up so I could be on strong pain meds referred me to assuming pain dr would agree with him. Pain dr told him no wasn't made up and told him about all the evidence in my many notes which clearly shows the proof of some of the many different parts which cause so much agony.

Being talked down to and treated like absolute rubbish by so many nurses and some drs while I've been in hospital as they hear the name of the meds I'm on and they immediately decide it is too much and I don't need them! They've tried to cut them before but luckily pain dr hasn't let them.

Being told I'm apparently "too young" to need all these meds and to have all the conditions. They don't just think well better not cause her severe pain seeing how she is under a certain age!

The fact a significant amount of pain started due to not being bloody listened to in the first place by so many drs and being fobbed off which lead to an existing condition getting out of control beyond belief. But no, I'm the bad one.

I need morphine to get on top of the pain so I can move. It keeps on top of the daily pain but obviously I still get sore which is to be expected. Any increase in pain which can happen whenever I require hospital admission for it to be given in a different manner.

I have been made out to be a drug seeker, misuser you name it over the years from so called medical professionals despite all the evidence being there in my notes! Some have been lovely but others automatically judge and when you're in a vulnerable way due to extreme pain being judged makes you feel even more useless, depressed and crap basically. They have caused me to want to not be here many times due to their attitudes and commemts that have been made to me.

It is obvious that pain meds are to try and keep on top of the pain. Mine do that which enables me to walk etc but I'm certainly not in a fit condition to run etc or long walks as that causes even more pain. I'm not away with the fairies on it. I function perfectly fine on it. I also would never have been prescribed it if I didn't bloody need it! Yet I walk in even hobble in and I'm met with the assumption I'm a drug seeker etc!

I often wonder how they would feel if someone treated one of their family members in the way they treat people out of ignorance and also out of pure nastiness.

Apologies for the length of that! It felt quite good to get all that out! I don't usually tend to discuss things in rl as people don't get it. The loneliness with it is horrible.

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.

Oh this is good to hear, I was wondering if I could do cycling - like you I can't walk far or stand for long, but I used to love cycling and we're planning on moving somewhere with lots of gorgeous parks. If I could cycle to them it would be life changing, but I've been unsure about investing money in a bike in case it's too painful.

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.

My GP only referred me to specialists when I produced a print out from a hypermobility charity (for the record HMSA are utter angels), before that she admitted she had no idea what was wrong with me, or how to find out.

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

Yes, those little things that other people don't need to think about. Hair is especially tough as as it involves keeping your arms up for longer periods, so puts strain on shoulders/upper back/elbows/wrists.

It would also be nice to have a thread where we can share tips for those of us who find pain meds don't work - or where the side effects mean the aren't an option.

A couple of years back I ended up with a 2 month long migraine, turns out it was caused by the pain meds. And of course I tried to cure it with more pain meds, which made it worse. It was only when I went cold turkey that it eventually stopped, so now I avoid them and try to manage my pain without them. Which isn't easy.

My electric bike has been a game changer, I can't walk far at all but the power assist on my bike means I can get out and about and even manage hills without pain...and it feels really liberating after years of having to rely on the car!

@MedusasBadHairDay

And when you tell your specialist on the next available consult that the prescribed pain medication didn't work because of bad side effects... The specialist headtilts (!) "Oh.. Well...then you're unwilling to keep using them?“ while labelling you as overreacting.

So unbelievably many people are in need of a chronic pain board, MNHQ!

Completely agree, we really need a chronic conditions/pain board.

I have ME, arthritis, thoracic outlet syndrome and I think I’ve developed TMJ and am waiting on a diagnosis. I’m in my mid 30s and this has been ongoing since my teens.

So tired of being in pain and pretending I’m not. My DH always says that I’m an amazing actress as I can put on a front for other people and the moment we’re alone I just drop.

It’s frightening how many of us have been let down and ignored by the healthcare system.

Hello everyone - thanks for the suggestion. We'll certainly have a think about this and get back to you ASAP.

Thanks @YetAnotherBeckyMumsnet

I'd like to share pain management tips with others. I get ratty when people with no experience recommend products they've seen on the shelves at Boots or seen advertised in a magazine but maybe there are people who have chronic pain who do actually find these things useful. I would be open to hearing from people with actual experience if they find Biofreeze useful, or if taking glucosamine or fish oil every day does actually help. I'm usually quite dismissive of these things because I see them advertised as wonder cures get sick of people telling me how they will cure me in a week or whatever but maybe I would be more open-minded if the advice is coming from actual fellow sufferers. I'm not talking cures obviously, I'd take a slight decrease in pain as a success.

Thanks becky! :)

Good idea. Also, why is the uk so behind on cannabis being available for medical use?

@Rae36 I have actually found Biofreeze in the last few weeks and it does actually help a bit!
I have pain at the base of the back of my head which radiates down to the top of my back across both shoulders and down my right arm. It particularly helps when I use it before bed but also spray it on when I get up and again throughout the day. It doesn't reduce my painkiller useage though but does give some relief.
I also use CBD massage oil occasionally which can help but I don't like the greasy feeling

Ah yes.

The dreaded "but x I boots has collagen in it why don't you just take that to cure your EDS?" Then a long list of where else I can buy such wonder products. I even had someone in the health food shop ask me what type of collagen my body has issues with "cos there's more than one"

Because my body, for whatever reason, attacks collagen, all of it, that's the difference between having hypermobility and hypermobility EDS - more than "just" joints are effected (prof told me that).

Stuffing my face with pills and potions and covering myself with various creams isn't going to cure me, nor in the case of the health food shop is buying a small carton of Lord knows what for £40 for two weeks dose.

@MedusasBadHairDay obviously it's individual, depending on your precise problem, but certainly don't give up on the idea of cycling. My problems all stem from an accident, prior to which I was quite a serious cyclist and I have not got back to what I was doing before, and maybe I never will, but I can cycle a lot better than I can walk. An ebike , as a PP suggested is a great idea. I have both and decide which bike to take depending on where I'm going and how I'm feeling on the day, but an ebike does make places that would currently be out of reach accessible again. Getting out, meeting friends (when we could!) and not feeling like they all have to hang back to "look after" me is great.

I'd love to have a board. I have fibromyalgia and have joined some Facebook groups in the past but I just don't feel like I fit into any of them and while I do like a good moan when I'm having a bad day I feel like that's what most of the groups ended up as constantly. I couldn't post about having a good day without being jumped on and told how bad others were that day.

So a board where we could have a thread for moaning and another for when we have good days would be amazing.

There are so many random symptoms that may show up at any time that being able to discuss them and know whether it's something to be worried about or not is important. A lot of doctors will dismiss new symptoms as just part of your chronic illness and going in armed with information is something we sadly have to be prepared for.

I'm lucky that I have an amazing doctor but I can't always guarantee to see him at my practice and I've had other doctors dismiss me without considering anything else.

I've had a bit of an epiphany with regards to my denial issues and the conditioning I've been subjected to by doctors, this thread has really made me think.

I've spent years battling with Doctors and being told my pain wasn't real. I've internalised this and labelled myself as a malingerer. Even though I now have a diagnosis I don't believe it, because I'm a hypochondriac/fraud/malingerer as this has been my narrative for years. There's no wonder I have issues around accepting my reality, because even sat here now with this contraption on my wrist I don't really believe it needs to be there. I've always wondered if my denial is related to the grief cycle, but I'm not sure I've even hit that point yet. I cried when my OT told me how well I was doing and told her there was nothing wrong with me, not because of denial but because I don't believe it. A colleague at work yesterday commented that she doesn't have half as much as I have to deal with, and my first thoughts were there's nothing wrong with me.

That is my issue. Years of being told I'm not ill by Doctors means I can't accept I am. On the odd occasion I do start to believe, I close the door quickly because I am scared of the reality of that. And in some ways I think I've convinced myself that I've got what I wanted, a shit diagnosis, so the fraud has now won. Mind slightly blown.

Just goes to show how powerful this thread has been though. Drawing on other people's experiences to make sense of my own, even if the conclusion is slightly discombobulating.

@Ouchwtfthistime but now you've made the link the good news is you're aware of it. I don't mean it'll now magically go away, but being aware can help you to begin to accept yourself more.

And no it's not as easy as I'm making it sound. But honestly even if you're just a bit kinder to yourself it'll help.

You would be fully justified in replying with the following :

Pot. Kettle. Black.

Because I am useless at this unless I really think to do it and get past the internal (and at times) external voices mocking me for not following medical advice.

Hope that makes sense.. I suspect it won't!

@Becca19962014 That does make perfect sense. Being kinder to myself is a challenging concept. I've had a lot to battle outside of my health and achieved, but I don't think I've actually congratulated myself for them. I did what I needed to do, despite my circumstances. So I don't view it as an achievement, or think about how hard it was, I just did it. So maybe all of this is part of my deeper narrative too. My OT did ask if I was a high achiever and I suspect I now understand what she was nodding towards.

Bloody hell, this is turning into a right counselling session. Firstly, I need to start to make small steps towards being kinder to myself, and work out what that looks like.

To be surrounded by people who can help remind you you ARENT going mad and aren't making it all up. I've suffered for 15 years and I still wonder some days if it's all in my head, because I've had such poor recognition and treatment throughout. It's only when I read threads like this which just totally GET IT that I remember I'm not the mad one and I have a real and legitimate problem.

My first admission to the London specialist hospital was a revelation. I didn't meet a single person who hadn't been accused of lying/faking for meds/attention seeking, it really helped me a lot.

And when one lady was found to not have anything physical causing her symptoms everyone rallied around to help support her - one thing that was really distressing was her being forced to have her first pscyhotherapy appointment on the ward, albeit behind curtains everything said could be heard - I asked for it to be done privately because she was asked about some very upsetting things that upset me, even though I'd not gone through them, and they obliged.

She's doing much better now, she and her husband moved to just outside London so she could get specialist help (after all she got in her area was "I told you so" and a book on mindfulness) and, consequently she has some proper mental health support for her needs, some of which she still has, as well as when she's physically unwell being taken seriously.

*psychotherapy

My autocorrect can't spell ..

The medical profession is very good at making you feel like you are the only medical mystery out there. Either in a well we don’t know why you are in pain or we can’t do anything about it. Not how common it is and how very much so many people are just left to get on with it.

another one who thinks we need a Chronic Pain board.

I'm 39, i've had back pain since i was 17, its my disks degenerating, which now causes sciatica.. i also have arthritis in my ankle and knee, and something going on with my right hip that they keep telling me is 'referred pain' from my disk issues... the fuck it is.

I'm tired of just being told 'lose weight' like i'm not trying, but i can barely walk more than 1500 steps without being in agony with my lower spine and hip...

And my god, the insomnia.. i'm lucky if i get 5hrs sleep, and its very broken because of pain.

I'm drained, and i'm fed up of being judged or being accused of 'faking it' all the time. I've been in pain for 22 fucking years, i'm tired.

Nodding along here and finding this all so useful.

Don't have much to say, but I bring and to share.