AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

@MrsHusky

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.

Welcome aboard @MrsHusky, sorry to hear you are also part of this club. Your 'like fuck it is' made me laugh, I can really relate to that!

@Becca19962014

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.

Gosh, there's masses of us out there all feeling the same isn't there, it's endemic. I'm so pleased the lady you spoke about got proper support because either outcome needs it. Whether an organic cause is found or not, it's somebody suffering all the same.

It would be so helpful to me, following long delayed emergency dental treatment they have done something to a nerve and I'm in constant agonising pain, 3 weeks on ive been told there's a good chance it's permanent (should have dissipated after 7-10 days). GP isn't interested because it's dental, can't get a dentist because of covid! So I'm working on what works, scheduling them effectively etc and no professional help. (Not pain free even then but low level enough to eat, attempt to be professional at work etc). Never realised how poor the advice was so can't imagine what you all have gone through

@MyGazeboisLeaking

And *@Ouchwtfthistime* - who the eff came up with uckin spoons?

How hard would it have been to say, you've got 10 batteries in your body each day... you need 4 to shower, one to make breakfast and 3 to make lunch. Pace them out and use the other 2 wisely.

What bloody idiot thought of SPOONS??

I'm liking the batteries analogy.

I could do with a place to find some blooming empathy and understanding.

I've had chronic pain for a while and thought I had it bad. Then last year I got a headache. It lasted four weeks before it shifted. The doctors said it was tension headaches.

Then it returned in January. I had to rush myself to hospital because they were concerned it was temporal arteritis. They said no, it's trigeminal neuralgia triggering migraines. It lasted three weeks.

I'm on outbreak number three, lasting two weeks so far. I feel like someone is boring into my brain behind my ear and I get flashes of the worst nerve pain in my face. Then I get migraine pain after a while because why not. Is all a nightmare, and no-one can do anything and I feel very alone with it all.

Awaiting a neurology appointment and MRI. Got to rule out MS. Taking meds that really knock me out (I have a morning nap and an afternoon nap).

Just bleurgh!

just bleurgh

Basically this. I spend hours in bed each day (just up from afternoon rest). No matter what I've tried my functioning just worsens. I still don't do it as my body tells me to (it's fine, just keep going, you can push through it and feel so much better...) see OP? Told you I'm bad at following my own advice! Anyway, if I don't my body now gets its revenge in the form of seizures that knock me about and out for hours.

Yet the "specialist" social worker advised me 99% of people "like me" find getting up early, spending all day every day in mind means I'll be back to normal and fully functioning in no time. Mind being miles away (I can no longer get into a car) and up several flights of steps (though I've been reliably informed that after the first flight there's a lift ). I tried ringing mind only to get the same advice AND told it costs £10 a day (as its classed as "treatment and care" so extra if you get disabiltity) plus annual membership; oh and they don't "do" physical needs - everything can be overcome with a bit of encouragement and effort.

I had a lovely physio once who really seemed to understand. When she got ill herself she apologised to me for not getting it, but she did. It was basics, when my hand went purple stop (others didn't). She was really good. She was forced to give up work due to her injury but she was so good. But she wasn't trained in the uk and I wonder if that was a big part of it.

I hate the double standards that we face.
On one hand you have the professionals saying "There's no cure. You have to learn to live with it. Think of it like other long term conditions like diabetes, theyroid problems, asthma and so on. They can't be cured but they can be managed".
Ok, fair enough, I get that, but nobody accuses asthma patients of "drug seeking behaviour" when they ask for a repeat inhaler prescription, thyroid patients don't get told they can have thyroxine as they'll get dependent on it, and diabetics don't get told to try to control their blood sugars with fucking mindfulness do they?!
I can fully accept that the mind and body don't work in isolation from each other and that most people with chronic anything are going to benefit from a holistic approach including non drug therapies and I am willing to have a go at more or less anything that might help. But I am not aware of any other long term condition where there seems to be an expectation that everyone should be able to manage without medication and that if you can't you are dishonest, addicted or weak. Or a bit of all those things. There probably are other conditions where people feel judged by those who are treating them, but I think it is very marked within chronic pain. I would love to be medication free and I have reduced to the absolute minimum I can cope with, so why do I feel like a criminal when I ring to ask for another prescription?

As for the cycling, we have a local place by where I live that does adapted cycling, but they have a whole range of standard bikes as well.

Hell will freeze over before I get on a 2 wheeled bike, but I can usually manage a few laps of the place on a trike. I usually pay for it later on though. But for a few hours, it's quite nice to do a 'normal' activity with my kids.

@MrsAvocet actually you wouldn't believe how I've been treated for having diabetes type 2. You absolutely do get blamed for needing meds and as I was told, stopping stuffing your face, eat no carbs, fruit and veg itll disappear. Actually not true at all. Once you have it you have it. It's a load of bollocks it can be reversed. It's always there once you're in the ranges and will always catch up with you.p, as it becomes harder to control. Mines genetic (been told that's bollocks. I'm just a fat, carb and sugar addict). I've had family members lose limbs because of it (told that's impossible) and even their lives. I've had zero to do with diabetes team in years because I was so distressed I gave up even trying to manage my blood sugars and ended up very unwell and hospitalised as a result (anything less than 30mmol here they don't give a shit about). Oh, and I was given a mindfullness book and told to do some "colouring" too.

I was told in hospital my arms and legs were going to drop off because my sugars were so disgusting (they were 6-8mmol (well within healthy diabetic range)). In reality they were more than a quarter of other patients in the bay. The difference was they were much older. One lady was really upset when they went to speak to her expecting the same but nope she got sympathy and told they knew she was doing her best; she actually did me a letter to support me in complaining - I got into trouble for that because of patient confidentiality (no I don't get it either).

I think once some brainless idiot decides you're on the make, lazy, stupid etc that's it your done for. I spent thousands on proof from specialists, most of which was binned after a psychiatrist said she knew I'd conned them as, "she looks fine and had zero needs when on my ward" (my needs were ignored as attention seeking and I ended up admitted to another ward as the idiot had stopped cold turkey all my meds). I mean really?! They're specialists. Takes years, if ever to see them, and then some "brainless idiot" like me goes and cons them??

*less than a quarter

Too much ranting to think!!

@TheLaughingGenome - my DD uses the batteries instead of spoons.

Some days, all her batteries are flat though but it's a good way for her to describe how she feels / how she can pace herself.

I'm only on this thread for her as I'm so fortunate enough to be well. You all have my utmost respect.

@Saviouronthreelegs

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.

@Saviouronthreelegs

You are NOT mad and you DO have legitimate health problems.

I wish everyone had someone to advocate for them when they're in such need x

@MrsAvocet
Reminds me of the first time my national health insurance advised me to try out their Yoga lessons at reduced rate. This was when my "injury" was still a suspected hernia. Now, I get that yoga excercises actually have benefits to my arms, legs and back... (hence trying it out!) And I understand there are many yoga "approaches"...

The 6 lessons I tried, were filled with silent question marks in the eyes of my teacher, because I repeatedly had to ask for a gentler approach to her excercises, because of the pain. Awkward!

A lot of "Ooohhhhmmmm" trances later, she actually had the nerve to tell me I better get off the painkillers and do a "retreat" with the group. That would cure just about anything (and yes, she mentioned worse conditions as well) I was so shocked I didn't even know a way to reply and debunk. WTAF was that about, really?!

I'm certain that mindfulness, yoga, stretching, music, etc... can help alleviate pain. It won't get rid of it though, as it is forever there to stay. It's quite frustrating to realise your body does something you can't put a stop to completely.

But when others (certainly professionals) start telling people to just be patient, suck it up and get off pain medication.... It's not at all helpful, it's just taking the piss, really.

@TheLumpySofaCushion thank you. I'm surrounded by people who love and support me so I'm very lucky but the 6 years it took for diagnosis took their toll with the way I was dealt with. The 9 years since haven't been ideal either but at least I've got something formal on my notes, whether or not medical professionals choose to believe it or not.

I find my faith helps me. I know I must balance between enough doing and enough rest, and the scales have a lot of rest involved. Not sleep, sleep is very very poor for me - I suffer with PTSD and night terrors as well as needing to get up throughout the night for meds; I have found I can rest listening to online services or Christian prayer or even Christmas music; audio books too. It doesn't stop the pain but it helps with the annoying "it's gone midnight, im in agony, I've got to get up at x and I can't sleep worrying" thoughts I get running round my head, of particular difficulty right now is having lost all medical care and benefits and being terrified about what will happen. If I don't begin to engage with prayers, services etc that will become a cycle that is destructive for me mentally and that adds to my insomnia.

Hope that makes sense.

We all take help and what gets us through where we can. I find Audio books very helpful in the early hours at least it is company.

@TulesDana

Oh god yes, I'm stuck in my lonely cycle of pain, guilt and drug changing. The pain relief that did work for me was discontinued ( a GP initiative, all patients pushed off similar meds). Now I'm left trialling amytriptyline, it's done sweet f a , and comes with a seriously depressing likelihood of harm, I'm loosing my mind. I guess the holy grail of chronic pain is finding effective pain relief that isn't at the cost of developing heart problems or dementia. I'd love to know how others are coping.

Amitriptyline didn't do much other than make me sleepy.

So I was also given Gabapentin three times a day and that works much better. Even though I have to keep increasing the dosage and I still get break through pain, that is better than the constant pain I use to have.

Worth an ask, next time you speak to a medically person.

@Idontlikethatnameanymore

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.

For turning over in bed, I have a snozzle sheet

It was recommended to me from another mumsnetter and they really help you turning over in bed. I still have to pull on the bed frame to get moving my numb legs but once I am moving my legs kinda follow. Much easier than before, when I would have to sit up manually move my legs and lie back down and in pain the whole time.

@Scotsmaw

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.

My arms are too weak too hold up an hairdryer long enough to dry my hair.

So with my birthday money, I bought a hair drying hood on a stand, like you get at the hairdressers.

The hood is at the foot of our bed. So I sit against the foot plate and let the hood dry my hair. It is brilliant, really saves the pain in my arms.

@YetAnotherBeckyMumsnet
Please could I ask for a small amendment.

If there is to be a new board could it be fir "Chronic Conditions".

As this would cover pain issues but also cover all other elements like mobility issues, finding work and effective pain killers under one board.

Just a thought.

Sorry about all my posts. With all the painkillers I take my memory is not the best and I wanted to respond to a few posters and I would have forgotten if I waited until I read the whole thread!

I don't think other people can understand the sense of relief, when you get diagnosed. They don't seem to realise that this just gives a name to the symptoms you were struggling with all along.

I had been struggling with my mobility over the last few years and was told to "be careful and wear walking boots" by a neurological consultant, as that would magically stop me falling over and down stairs.

It didn't help, it just meant I started adapting my behaviour to my lessening mobility needs. Going from running 8 miles outside, to 5 miles, to walking 5 miles, to walking inside on treadmill, to stop walking for exercise, to total breakdown of mobility early 2020 means I walk a few steps with sticks inside, wheelchair outside.

I had also gone from walking fine on stairs, to being careful on stairs, to avoiding stairs, to refusing to use stairs (after a particularly painful injury falling down the dentist stairs).

Even watching people using stairs on tv had me worried they would fall, it was so much in my mindset.

I would even avoid walking on hills, as I fell even with care on the flat. So I would ask my friend to meet me at the top of her hill for a drink in the cafe (pre Covid 2019) rather than risk walking on the hill.

Then when I got a second referral to a specialist neurologist consultant who diagnosed me, I was relieved that I now knew what it was. But that didn't change what I was already dealing with day to day.

My sister said that I had coped well with my diagnosis but in reality it was just a name for the symptoms I was managing for years. I had made so many small changes that having a name didn't change that. It just goes to show that most people don't get what we are going through, unless it happens to them.

Painkiller wise, I do worry. The amount of painkillers keeps going up. But when I raised my concerns with my consultant and I asked him to reduce the number of painkillers I take daily. He just said, you still get break through pain at this level, let's leave them be.

On the bright side my consultant reduced my steroids by 1 pill daily and removed my weekly alodronic acid pill. So I am down to 34 pills a day!

Oh and attitude of medical people means everything.

When I completed fell to pieces from March 2020, it was a frightening time. Because day by day I was losing feeling and function in my body and no one could tell me why or help me.

One consultant I remember at the local hospital was so kind. I had been sent to him as an emergency day patient to get an mri test by my gp.

This local consultant was kind and said he was going to send me for the mri as the GP had requested and he was almost sure that the mri would come back clear (which it did)

He asked what would the gp do if the MRI came back clear and I explained we were waiting for an second neurological referral. He said he would send a letter asking the GP to speed it up and I should ask the same.

He asked what I feeling about my issues. The first person to ask that. I was stunned and blurted out the truth. That I was afraid my body was shutting down and dying. As the numbeness was raising up my body and I lost touch with my bladder, bowel, stomach. I cried what if it gets to my lungs and I don't wake up again.

The consultant was shocked and said oh. Then he kindly said that "something was clearly wrong with me. That he hadn't seen anyone with my particular symptoms before but that the neurologists would hopefully sort things out for me"

I think I need to send that consultant a card to thank him for supporting me and his honesty telling me what he did. Plus I might mention my diagnosis and how flipping rare it is and no wonder he hadn't seen anyone before with my medical history and symptoms.

So my take away from my experience this is the correct consultant can give the right answer.

But even if the consultant doesn't have the answer, having the right caring attitude to the patient, goes so far and really helps them through everything.

@Worrysaboutalot

Sorry about all my posts. With all the painkillers I take my memory is not the best and I wanted to respond to a few posters and I would have forgotten if I waited until I read the whole thread!

I don't think other people can understand the sense of relief, when you get diagnosed. They don't seem to realise that this just gives a name to the symptoms you were struggling with all along.

I had been struggling with my mobility over the last few years and was told to "be careful and wear walking boots" by a neurological consultant, as that would magically stop me falling over and down stairs.

It didn't help, it just meant I started adapting my behaviour to my lessening mobility needs. Going from running 8 miles outside, to 5 miles, to walking 5 miles, to walking inside on treadmill, to stop walking for exercise, to total breakdown of mobility early 2020 means I walk a few steps with sticks inside, wheelchair outside.

I had also gone from walking fine on stairs, to being careful on stairs, to avoiding stairs, to refusing to use stairs (after a particularly painful injury falling down the dentist stairs).

Even watching people using stairs on tv had me worried they would fall, it was so much in my mindset.

I would even avoid walking on hills, as I fell even with care on the flat. So I would ask my friend to meet me at the top of her hill for a drink in the cafe (pre Covid 2019) rather than risk walking on the hill.

Then when I got a second referral to a specialist neurologist consultant who diagnosed me, I was relieved that I now knew what it was. But that didn't change what I was already dealing with day to day.

My sister said that I had coped well with my diagnosis but in reality it was just a name for the symptoms I was managing for years. I had made so many small changes that having a name didn't change that. It just goes to show that most people don't get what we are going through, unless it happens to them.

Painkiller wise, I do worry. The amount of painkillers keeps going up. But when I raised my concerns with my consultant and I asked him to reduce the number of painkillers I take daily. He just said, you still get break through pain at this level, let's leave them be.

On the bright side my consultant reduced my steroids by 1 pill daily and removed my weekly alodronic acid pill. So I am down to 34 pills a day!

Oh and attitude of medical people means everything.

When I completed fell to pieces from March 2020, it was a frightening time. Because day by day I was losing feeling and function in my body and no one could tell me why or help me.

One consultant I remember at the local hospital was so kind. I had been sent to him as an emergency day patient to get an mri test by my gp.

This local consultant was kind and said he was going to send me for the mri as the GP had requested and he was almost sure that the mri would come back clear (which it did)

He asked what would the gp do if the MRI came back clear and I explained we were waiting for an second neurological referral. He said he would send a letter asking the GP to speed it up and I should ask the same.

He asked what I feeling about my issues. The first person to ask that. I was stunned and blurted out the truth. That I was afraid my body was shutting down and dying. As the numbeness was raising up my body and I lost touch with my bladder, bowel, stomach. I cried what if it gets to my lungs and I don't wake up again.

The consultant was shocked and said oh. Then he kindly said that "something was clearly wrong with me. That he hadn't seen anyone with my particular symptoms before but that the neurologists would hopefully sort things out for me"

I think I need to send that consultant a card to thank him for supporting me and his honesty telling me what he did. Plus I might mention my diagnosis and how flipping rare it is and no wonder he hadn't seen anyone before with my medical history and symptoms.

So my take away from my experience this is the correct consultant can give the right answer.

But even if the consultant doesn't have the answer, having the right caring attitude to the patient, goes so far and really helps them through everything.

Pleased to see you here @Worrysaboutalot, I remember your thread well and often think about you. I agree, Chronic Conditions encapsulates more, and within that we'd have more people to share their experiences and tips. That hairdryer one is a game changer! I can't hold a hairdryer either, brushing it is enough I can't remember, have you managed to sort out the car yet? I've moved to automatic but currently can't drive that. I'm not at the stage of definitely needing an adapted car, because they may be able to do something with my wrists but 'what ifs' buzzing in the back of my head.

@Ouchwtfthistime Aww, thank you :) No car yet, hoping to get the car with hand adaptions by April. However I am super pleased to get the front door sorted, so now I can walk (roll) around the village on my own or with the kids. That makes a big difference and I no longer feels trapped in the house (even if it was trapped with my awesome family).

[quote Worrysaboutalot]@Ouchwtfthistime Aww, thank you :) No car yet, hoping to get the car with hand adaptions by April. However I am super pleased to get the front door sorted, so now I can walk (roll) around the village on my own or with the kids. That makes a big difference and I no longer feels trapped in the house (even if it was trapped with my awesome family).[/quote]
Fabulous news about being able to get out, that must make such a difference to you. Your threads have really resonated with me, in that you have a very practical approach to the difficulties you are facing. I have a very similar pragmatic approach, and I can relate to those sudden moments when you have a little cry when you realise the enormity of what's going on; although evidently I still have a lot of work to do on that front.

The car sounds promising, I'll be very interested to hear how that pans out for you! I'm currently being pissy because I want to hang the washing out. I can't figure out a way to do it that won't take ages or possibly cause my wrist more damage, so I'll have to put the tumble dryer on 😡 Stupid thing to be pissed about, but I am. I'll get over it!