Pain Concern

What is pain anyway

What is needed is a diagnostic tool that measures pain accurately. How can anyone judge their own pain levels reliably when they occupy a universe with nothing else In it ? And how can anyone have empathy for another's pain when it is not inside them? I would have thought the brain would have areas that light up during the experience or be pumping out some chemical that could be measured in the blood.

If we had this tool it would save the guilt ,stigma, suspicion and dodgy benefit assessments that we have to go through.

13 Replies

I just remembered that when I'm really suffering my body odour changes. I hardly smell of anything usually as I don't sweat much but when things get really medieval in the pain department I smell horrible and weird, not normal musky BO. Anyone else notice this? Maybe the smell can be isolated and then bees could be trained as a pain assessment tool.

1 like

Pain and its intensity is very much in the eyes of the beholder. If you were to go to a Pain Clinic you will be introduced to a pain ladder that consists of ten levels, from little pain to severe pain. This will help you discuss your pain position on the ladder. Your body will produce a drug that is related to Opiates and this suppresses the pain level. The problem arises when your body cannot produce sufficient levels of this drug and the brain finds it cannot cope with the level of pain so you supplement a medication to build up your resistance so you get temporary relief.

I do not know what is causing your condition depending on your problem your GP can send you to a pain clinic and they will explain how you can get relief. The main thing generally is been able to talk to your Specialists and GP.

The course will also cover medications, how to relax and pacing when you are wanting to do various activities.

Have words with your GP and see what your Practice can suggest



I know it, I researched all aspects of pain from its deliberate application to its relief as part of trying to understand my own situation and put it into perspective, but who has experienced pain levels 9 and 10 in our society to be able to make the comparison?. I smashed my thumb once and thought that was a 10 until I had my wisdom teeth taken out and all of them became infected. Now I rarely describe my neuropathy pains as above a 3. The church has insructional drawings of the faces that people make under torture to help inquisitors apply pain in a fair and prescribed way. The tight lipped, sweaty face of a typical back pain sufferer is there and way down on the scale.

1 like

I definitely feel hotter just before pain is about to go up a notch. If it is just there as always , kept in check by whatever I've been taking, but is about to get a lot worse then I feel a flush spreading through my body.


Very well captured. Sometimes I long to hand the baton over for an hour. I think people would be shocked. I also think some of us plod on doing things that put others at risk. Seriously just take driving. I am lucky enough to drive. But am I safe navigating pain thick fog, fatigue and the car. The roads are my oyster but I only drive locally. One has to be glad that I am not in charge of trident. And for all the pain clinic and our own best effort for some drugs don't cut the mustard and are more of a hindrance than help. Ie not lowering levels and spacing us out even more. Pacing has its place but can you relax when in pain. And then of course there is remaining positive while depressed. I think many of us would be sacked if there were a way to measure the impact of our pain on our jobs. And many us want to jump off a cliff if we dare think of carrying the unrelenting pervasive pain another day let alone a lifetime. And I know that I am one of the lucky ones. Have you read the Pain Chronicles. So impressed was I by the one I borrowed that I brought my own. Doesn't help the pain a jot but is very illuminating. Only we walk in our shoes. That doesn't help when trying to justify our bodies weather to family and friends him at the benifit office or the medics. It would be so nice to produce evidence. The day will come.

Shine on. Tis the only way.


Pain and pain evaluation is almost an area of quack medicine and snake oil. I have learnt by experience that if I try to give my pain a score the pain increases. I have learnt that if I smile with my eyes the pain decreases.

Pain has been decided by some that it is dodgy nerves. So there is a treatment to silence dodgy nerves. There is often no treatment from medical professions for the pain increases that we cause by muscle usage and poor posture. The treatment that has been found to be effective is from the complementary medicine practitioners.

The medical profession do not investigate muscles with their hands. X-rays do not show muscle behaviour which causes pain. MRI scans show relationship between tissue and bones they do not show the muscle behaviour which causes the pain.

Sorry I have not answered your question the way you want. I just do not think based on my experience that pain is not what the doctors claim it is.

Not sure if I have been helpful or not.

1 like

Thanks for thinking about this , it was just thought exercise because a lot of people on here are very specific about the type of pain they suffer from. Which is why I think people need to understand what their pain is relative to other people's and how describing it abstract when it is in a different location .


Look up the McGill Pain index and how it was established


Everyone has a pain level that is true for them . I believe it is individual . 10 being the highest , that means 10 is unbearable FOR YOU . Your body is different from anyone else and your pain is different and your tolerance is unique to you . Those are my thoughts . 😃

1 like

Unfortunately pain isn't absolute, nor does it have the same effect at different times even at a similar level. I can have severe pain but still manage to function, and yet on other days when I have had nagging low level pain for days it gets to me and I am a write off. I find the best pain scales are the ones that indicate how your functioning is being affected


Everybody is saying something like this but if you go to a PIP interview they want to know what your pain level is from 1 to 10 and don't take any notice of what you say anyway

1 like

There is the intolerable and there is the unimaginable. an exercise I do when things are bad is to imagine what it was like to be tortured. Then imagine what it was like after the torture when the swelling would bring its own pain and there is nothing but a cold stone floor to sit on. It's something that countless people have endured and it's a hard thing to think about but if I'm feeling sorry for myself it puts things into perspective. Those people endured (and still do) a 10 on the pain scale. So if you think your pain is peaking around what you perceive to be 8 or higher, imagine someone comes with a hammer and breaks your fingers. How much more pain would you be in? It can't just be 2 on the scale so I think the pain most people experience while still being able to write on forums is about a 5.

If you could have experienced your current pain when your life was pain free you may have said that you wouldn't be able to tolerate it, yet you do because you have no choice and it becomes your normality.

I think a more accurate scale would measure a persons ability to concentrate on things such as read a book or watch a film on the lower scale to barely be able to speak or write their name on the other.

I wouldn't put any of that on a PIP or ESA form though!


Having recently had a sudden descent into a wheelchair (but I can GET OUT of it, which is an important sanity factor, I am pretty aware of pain right now. The irony is that now I am using a wheelchair when out of home, my neuropathy pain has disappeared. Before it had got so bad that I would literally yell in pain in the night.

Your instinct says keep moving, pretend to yourself there is nothing wrong, but I now realise I have been dumb for years, in being like that. To be honest, I have always felt like a bit of a fraud, as although I am HIV positive, I am an elite controller ie my immune system is blooming (CD4 700+ and zero viral load.) I have never needed medication.

I have been like that since 2009, diagnosis 2008, following rape (which I don't talk about - don't want to be distinguished from anybody else, ie poor victim rather than slightly dodgy sexual behaviour (or worse ...) which is often in the back of non HIV people's minds.

However, pain relief took on a whole new perspective following being hit by a door at an airport recently in Brittany, as it hasdno accessible access (yes, I know that is against the law - when I feel a bit better I am going to do something about it.) With whiplash and preternaturally high blood pressure (and it is normally low if anything) I was prescribed paracetamol by a hospital in France. I discovered the hard way that, if you have long term use of painkillers, paracetamol can make your blood pressure rocket.

Like others with neuropathy, I have been through every available prescribable solution, including: gabapentin, amitryptiline, patches, tens, the capsicum cream and settled on codydramol. Over the years I have taken them only when lying awake at night with pain, and in real terms that means may be none for weeks, then 2. Just 2. Luckily.

With paracetamol, I always viewed it as a safe but relatively ineffective, drug. I have twice taken the 1000mg doses they give you in France and gone out like a light. In the UK we tend to go for 500mg,. In a day that is the difference between 4x 1000 - ie 4000, or 4x 500 - ie 2000, per day.) Luckly my natural aversion to any medication meant that I took only ONE. It left me unconscious for three hours, after which I woke up bright red and unable to breathe with a blood pressure of 280 allegedly (it was bad enough when it was 240 - which led me to say to this snappy French nurse, "Oh dear, I must be dead ..." Which made her shout at me. I asked her to go away and not press alarm buttons, to give me 10 minutes alone, and I would reduce it via yogic breathing. I got it oto 180 and then 10 minutes later to 168.

The rare paracetamol side effect is known (for example, the pharmacist in France knew and said "Of course I know about it, it's rare but I'm a pharmacist." But doctors in Fracne and here did not, but found it by checking on the internet and with complex drugs listings. It isn't recorded on the leaflet in the box, or at least any one that I have seen.

I was literally saved by a friend who is an experienced masseuse, teaches it in colleges and is very interested in alternative medicine. She is anti drugs and never accepts anything without checking it out first. When I told a doctor in France about it, he checked it out, and found it to be true. He told me NEVER to take codeine or paracetamol again. It happens with long term use of pain killers apparently, and hwile my use was long term it was very light. 4 in a month as opposed to in a day, as prescribed on the packet. For the whiplash the doctor therefore prescribed aspirin (which makes me sick - feels like my stomach is bleeding.)

I have therefore chosen acupuncture, massage and yogic breathing, which I have done for years + nutrition. The latter equates to beetroot juice (it's called Beetit, bad pun but memorable), plus a liquid version of Omega 6, Magnesium Citrate and a dissolving multi vitamin/mineral supplement. But what works best is laughing as much as possible. Having fun, there is so much that is funny, even if a lot of it is black humour.

PS I am on a NICE standing committee and intend to raise the paracetamol issue so that the medical profession and the rest of us are aware of the risk.


You may also like...