Explaining pain

I know why I'm in pain, or mostly, some of it is from old injuries, some from osteoarthritis and some from fibromyalgia. Fibromyalgia is a difficult one for normal doctors to deal with, its a diagnosis of exclusion rather than inclusion, it's one of the things they're left with after they've done all the tests they can think of. Osteoarthritis they can only treat with pain killers, steroid injections or replacing the joints, mine isn't bad enough for me to be on any list for surgery, even though my pain relief options are so limited. 

The pleasurable pain relieving options are expensive far more expensive than the ilegal one. The NHS is very reluctant to even think about using it, even though experts agree that it's a good option for many, they can't even use CBD oil and thats an expensive option too.

Oddly one of the things I find most helpful is reflexology treatments, although they're expensive too, but at least they treat all of me, rather than just bits of me.

This is a universally accepted view tho'

An international definition of pain does not formally include it. e.g that of the International Association for the Study of Pain.

Despite there being plenty of evidence to indicate that it is...

PAIN-D-23-01165 20..23

I wonder if there is a wider thread here about parts of society "cherry picking" what they want to acknowledge to exist, talk about and engage with.

In the context of the experiences that have been raised in this discussion this seems to be what is being encountered.

Quote from this:

Unseen agony: Dismantling autism’s house of pain | The Transmitter: Neuroscience News and Perspectives

“The challenge with autism is that we’re dealing with a population that has altered social behavior,” Moore says. “And pain behavior is a fundamentally social thing.”

Hmmm... returning to this as "explaining pain"

because:

1) would like to help TheCatWoman 

2) Except for a very few people with a rare genetic condition we all experience pain which, except for a very few people, is generally considered unpleasant so...

I have spent the past 25 years working with people who primarily have got to the point of seeing me because they are driven to do so by pain.

I realise that other people have written books on the subject and there is s vast body of study related to it.

Furthermore my version of understanding it and explaining it is guaranteed to be incomplete and might by the very nature of things be upsetting to some people who are in pain.  This gets tricky personally as I aspire to live by a "do no harm" principle.

Here's my quick go of explaining it tho'

Pain is a message -  a rare group of people who, by their genetics, don't feel it can end up severely injured because they don't receive a message to stop doing something that is causing injury.

A whole load of philosophers since conclude that pain and pleasure are on a continuum.  The likes of Aristotle nearly 2 1/2 thousand years ago reckoned that pain stops us from feeling pleasure.

More recently many neuroscientist conclude that pleasure stops us from feeling pain and also that the brain can control the degree of pain that is perceived, based on which pain stimuli are to be ignored to pursue potential gains.

In this context the experience of pain varies - even though the "cause" may still be there.

Sometimes we don't realise we have been not perceiving pain until it builds up to a point where one has to acknowledge it or because the things that have been preventing us from noticing it are no longer doing so.

Pain (and pleasure) are strongly correlated to emotions.  Pain can trigger anger and frustration which in itself ramps up the experience of pain.  Pleasure the opposite somewhat.

"painkillers" per se might be the metaphorical equivalent to shooting the messenger who brings one bad news and then consequently not attending to the cause of the pain.  Meanwhile the thing that is causing the pain might be getting worse because one has been enabled to ignore it.

This is not to say that if the cause of the pain is intractable one should not deserve and receive relief. 

Personally I believe that addressing the cause of the pain where possible is the best thing to prioritise.  Using analgesia - including pleasurable things - to enable this as necessary.

Best wishes

I was asked to rate my pain from one to ten recently - I had a tooth infection that was incredibly painful (literal agony that was driving me crazy and stopping me from sleeping) and i was trying to get an emergency appointment. It’s a hard question to answer - but I suppose there aren’t many easy ways to get someone to describe their level of pain. They then prescribed me very strong antibiotics to treat the infection and they gave me appallingly painful stomach pains and nausea. So I’ve had a lot of pain recently. It’s been a serious lesson for me in what pain does to you mentally - I felt I couldn’t concentrate on anything else at all and it started to really wear me down and make me feel really depressed. Thankfully I’ve now got some relief - but they’ve given me the option of extraction or root canal for the tooth involved - and I seriously struggle with making decisions and don’t know what to do. I’m sorry you’re dealing with a lot of pain - that’s just the hardest thing to be living with. I hope you get more help soon. I’ve taken so many painkillers over the last three weeks and I hate taking them as I worry about the impact of drugs on the body. What can you do though? 

I'm quite capable of standing up for myself with doctors and I'm lucky that my GP's are really good, so good that when I next move house I will want to stay in thier catchment area, I certainly wouldn't go to the ones down the road who I don't think could diagnose a rainy day.

I'm lucky being old enough not to have anything menstral now, but I remember when I did and it was such a struggle to be taken seriously. I still don't understand why women are sent to gynaecologists, who are essentailly surgeons, when so many problems are hormonal, it seems to me that an endrincrinologist would be more appropriate? I remember seeing a study done years ago where details were anonomised and the symptoms given to doctors to see hwat they'd advice? Nearly all of them recognised IBS, but the patients were all women, who'd all been refered to gynae depts, some having surgeries which were totally unnessercary. I hope that the days are past when any woman complaining of abdominal pain and problems aren't dismissed by being told to go and have a baby, but I'm not holding my breath. 

When I went to the pain clinic before they said I was already doing all the stuff they recommend like exercising daily, using the endorphin wave from a brisk walk to get me through the rest of what I needed to do that day. What was worse, was that they seemed amazed that I knew about this stuff and that his was new ground to them when I'd read it in a womens magazine 30 years previously!

For me it's the whole group, it's the side effects that end up being worse than the thing I'm taking them for.

It isn’t nice seeing someone going through so much suffering. Having an operation/s for a stoma is a big thing. My mum had an ileostomy and it was horrible seeing what she endured, although her condition had been diagnosed promptly.

Oh indeed, sorry I should have said I was just thinking of my mother-in-law who just had to have most of her intestines removed earlier this year and a stoma fitted after having her pain ignored. The surgeon didn't know how she managed. So yes, probably lots of good cases, but still some bad, just depends if you know them personally I guess. It was hard seeing her so distressed and the doctors had missed something basic at the first appointment years earlier. Sorry I just worry about cluttering posts with irrelevant info to the poster.

Cinnabar_wing said:

  I know so many women with different conditions that went through years of pain, only to require major surgery and an 'oops we missed that'

Yes, I have seen accounts on TV news programmes and read news articles about women having conditions such as endometriosis who were missed. I think female pain was ignored more when I was younger. Nowadays with claims for medical negligence at a high, doctors are generally more careful to avoid the risk. 

We tend just to hear about the cases that go wrong, and we aren’t told of the thousands of cases that go well. 

My previous partner and I couldn't take Ibuprofen that much.

We eventually were prescribed Naproxen, and it was an improvement.

I am not advising you take it, but that you may ask the doctor whether is worth trying. 

Umm, I don't know if this is helpful, but expands on the previous point.  I saw something about the Mankoski pain scale which looked really handy for actually understanding what the numbers mean. 

I remember during a miscarriage being in so much pain I got a friend to look after my 1 year old so my husband could take me to A&E. But when they asked, I compared it to childbirth and said 6, which I realise now would have been a 9 at least as I won't even normally go to the doctor, so I didn't get anything.

It's also a known thing that female pain is often ignored clincially and put down to 'probably a female matter'.  I know so many women with different conditions that went through years of pain, only to require major surgery and an 'oops we missed that'. I don't have any detailed notes to back that up though, I just remember reading it somewhere a long time ago.

TheCatWoman said:

I've had loads of problems getting people to accept that I really can't take most painkillers

How about keeping a journal just about the medications you use, that are tried and that have failed - you should be able to look up the drug groups involved and present the summary list of ones that are good, bad and have side effects whenever you see a doc.

This should do all the working out for them and they just need to find a drug in the category that you are tolerant to and is effective.

If you experience push back from them then get your GP to put it in writing for you instead - that will make them be more serious before considering refusing "medical advice".

in practise the raising the other leg under bit happens as one is uncurling ...  realised after posting above...

sorry

Yes, being able to get out of the bath is a really valid goal TheCatWoman it fits in the "physically functioning" domain of the list I shared.

I have experienced same problem and got around it by:  (sorry if you already know this and have tried it and it doesn't work..)

If it is safe to do so (e.g. having someone able and trusted in the circumstances to assist as necessary - could put on swimwear in bath for modesty before they come in perhaps). 

A non-slip surface at the bottom of the bath helps - at the very least make sure all the soapy water is cleared so risk of slipping minimised.  You also will need suitable hand-holds until skill and proficiency improves - where that other person might be helpful...

Rolling onto one's front first. If you can't do that then the rest of this is obviously not going to be possible.

Then kneeling with hands on side of bath.

Then bring best leg underneath and push up with arms and that leg until other leg can be drawn up underneath. 

Go especially steady with the next bit as bring one's head up from a prone position can leave one feeling transiently dizzy.

Uncurling to an upright standing position using hand and arms on something to stabilse.

With suitable care and support step out of the bath.

If this is s different approach to the one you have been finding more difficult and it works then...

It also might indicate how the other domains listed could be addressed by doing things in a different way too.

Last time I went it was so rushed, I had about 30 seconds with the consultant who just came in prodded my back and left saying the area of damage thats causing pain is to big for me to have injections.

I've had loads of problems getting people to accept that I really can't take most painkillers, they see on't instead of can't, or at least extrememly unwilling to take something that at best will make the world inside and outside of my head look like a detuned telly, or give me manic hallucinations. Not only that but it dosen't kill the pain, so I have pain and halucinations which is not a good combination.

Another thing they asked was what goals I've have, I just pit that I'm autistic and don't have any, or should I put being able to get out of the bath as a goal?

Hi TheCatWoman 

In respect of that pain scale they gave you  It is often categorised into: no pain = 0, mild pain = 1-3, moderate pain = 4-6, severe pain = 7-10, but these categories do not necessarily reflect patient meanings, and are poor for any assessment of change. (source: British Pain Society).

So anything that is 7 or above is saying to them you're in severe pain for example.  So maybe don't get too hooked up on comparatives - be as honest as one can be with such a strange question and go from there maybe?

Likewise saying one is experiencing leg pain of 10/10 whilst skipping in and smiling happily would also tell them something - or inspire them to ask whether they could have any of whatever it is you're taking...

Anyway, pain is also experienced in many different dimensions and as you highlight what helps one doesn't help or indeed suit all.

Pain and its experience has a significant emotional component too and  a little bit of understanding goes a long way however in a system that is based on filling in forms and protocols perhaps this gets lost sometimes.

I live with chronic pain myself from a youth where exuberance and fool-hardiness lead to a few broken bones and the arthritis they told me I'd get back then certainly came true!

The same resource of the British Pain Society says: "Chronic pain has multiple effects on patients, so outcome measures cover several domains: Pain Quantity, Pain Interference, Physical Functioning, Emotional Functioning, Quality of Life, Patient reported global ratings"

I wonder whether with a bit of imagination some help in one of those domains might be found and I wonder whether priming you for thinking in those terms might help you get the best out of your encounters with the pain clinic?

I have never understood scoring systems like this. I'm unlikely to have experienced the worst pain so how can I compare my pain to a pain I've never felt. And how can I remember how painful previous pains were compared to this one without experiencing them at the same time. I always want to give explanations for my answers too.

I'm sorry you're experiencing this pain and having a difficult time getting help. Things like the medical system can be so much more difficult to navigate with autism - it can be really hard.

I think you're right to get checked out again but I understand your frustrations with not expecting them to be of much help. I hope in this case that you're wrong and they are helpful.

I can’t provide a number for that pain scoring system too, and also the one that scores for depression. I just tell them that system doesn’t work for me.

I think there is a limit to what medicine can do regarding some types of pain such as joint pain, even for those with unlimited finances and access to the best medicine in the world. I use a combination of medication, exercise, physiotherapy, swimming and meditation to manage my pain. I have ongoing back pain and weakness following multiple vertebra fractures.  I have two joint replacements which have given me immense relief from pain, with the third not far off on the horizon.. Coincidentally, your post is timely as I’m off to the hospital for an injection into a joint tomorrow morning.

TheCatWoman said:

I've done everything I can for 30 odd years to stay out of a wheelchair and now when I ask for help, theres nothing they can do, or will do or consider.

In my part of the world, there can be a reluctance to refer on for scans, tests and treatment unless people push. This has been highlighted in the news several times. The hospitals here have gone over budget, and necessary preoccupation with saving money means treatment offered is inconsistent or nonexistent.