Anyone get indeterminate pain? As some may know, I am much more greatly affected cognitively than in terms of physical activity. My illness goes through phases. It's kind of a very slow spiral of improvement. In one phase I feel as though I am in great pain, except I can't feel the pain. The phase doesn't normally last that long and the indeterminate pain is not constant. The sense of being in pain, though, is so acute that I find myself saying (sometimes out loud – I live alone) things like: '****, that hurts. That really ****ing hurts.' etc. It really does feel as though I'm in pain, almost as if some part of my body which has no sensation is being tortured Odd.
As someone who does not have ME/CFS, and has never experienced what you describe (if I'm understanding right), I am finding it really difficult to understand what you mean. I am familiar with referred pain, such as sciatica, where it feels like leg, foot and behind are really uncomfortable, numb, etc. A weird sort of pain that it's hard to decide if it is pain or not, but distinctly unpleasant. The point about referred pain is that it is not the leg/foot etc that is the problem, but the nerve carrying those pains signals itself being intruded upon, trapped, but back problems. Is this what you mean or something very different?
No, it's not a referred pain. I can't feel any pain anywhere. But I have the sensation that I am in pain.
That sounds horrible and very disconcerting, John. I don't experience what you are describing. I have pain in all my muscles all the time which gets worse the more I use them. I do find the sensation of whole body pain becomes hard to bear when I am more physically and cognitively exhausted, and seems to amplify when I start to rest after minor exertion. I wonder whether you can identify triggers for the pain sensation happening to you. For example time of day, or whether it correlates with cognitive worsening.
Thanks, though I have kind of got used to it, and usually I feel bad like this just before there is a slight overall improvement. It does depend on the phase of the illness and then within that the time of day, but then all my symptoms do. I am at least fortunate that I don't get the horrible muscular pains you and others do so can be more active physically.
I have moderate-severe fibromyalgia pain and sometimes the pain is so all encompassing (throughout the body) that I don't have a specific area screaming "pain" but my brain is reacting to the level of nerve discharges with increased levels of fatigue, confusion. I can't think clearly when this happens until I decide to take my med (tizanidine, a muscle relaxant) and lie down on a heating pad and veg for awhile. I have no idea if this pertains to your pain. But I thought I'd throw it in the mix.
What do you mean with that? Is it a description of a feeling - and such descriptions ever are at least vague enough, as language is made for things in the objectworld out there - ? Logically it makes no sense. Pain is a feeling. And then there is an interpretation needed, pain in this or that, eg in the leg or whatever, and this interpretation might be wrong, as can be seen when a pain-feeling initially comes up and one is is asking oneself, what? Or being at a dentist: which tooth is it? Pain is not a result of a judgement, but a ground on which a judgement is made. You can also not say, I feel that I am in great happiness, only that I can't feel the happiness. If you don't feel happy, you indeed are not happy. The only difference here is that happiness is a complex feeling and pain is a basic one, probably one of the oldest in the process of evolution. I think it is important to be clear here, as this logical inconsistency may allow for further wrong theories, especially when judgements about pain are considered to be a main influence on pain.
I can't really put it much clearer. I have the experience of being in pain but cannot feel pain anywhere. It as if some part of my body which has no sensation is being subjected to a physical trauma. I can't help what logical inconsistencies may arise nor that it makes no sense to you. It is what I experience.
I relatively recently have started to experience when in PEM a nondescript sensation, that I can only describe as a sense of emptiness or of something missing. It can be vaguely localised to my legs or upper limbs or involve the whole body but has no precise location; at its most intense it becomes pain. I wonder if it relates to a nutrient or chemical deficiency or a build up of a waste product. I don’t know if this could correlate in any way to your experience, @JohnTheJack?
Possibly, but my own experience is much more intense. It really does seem that I am in fairly intense pain. This is just pure speculation but I think it may be neurological.
Often I do not realise I am in pain. What I notice is that I am squirming and constantly moving position. It is not a pleasant sensation like being pain free. Pain killers and a heat pad help and then I do feel as if the pain is less. I have come to my own conclusions of what is happening but might be wildly wrong. Pain consists of signals being sent along the pain bundles of the nerves. (Heat helps because the nerve can't send a signal through the heat sensing bundles at the same time as the pain signal.) This signal is then interpreted as pain by the brain which notifies our conscious mind to pay attention. In pain clinics they teach people to use distraction techniques so that your attention is not completely focussed on the pain. Years ago when I had a bad muscular pain not connected to my ME I was able to craft and lower the distress that way. Nerves also "get tired" and have to recharge, which is why some pain is pulsing. So putting these things together I think, in my case anyway, that the nerves are sending pain signals from all over my body with the ME pain caused by lactic acid build up (sort of, for simplicity) If it was a stubbed toe or serious inflammation it would be strong enough to break through and force my attention but the diffuse pain of ME is not like that. At times I am just too ill for my brain to bring very much to conscious attention. Other parts of my body react normally to being in so much pain which is why I keep changing position and so on but my attention is not engaged. Also small lesions have been found on MRI in ME patients and it is possible that there are dead spots in our brain that look too small for medics to take seriously but still have an effect. People have very strange things happen after strokes. It is not a strange idea that the part which draws our attention to pain is not working properly. Most body processes are dynamic but we take them for granted and think they are the base level instead of realising a lot of work is going on to make them happen. Considering ME as a disease where there is not enough ATP available to power the machinery being switched on (like boiling a kettle) explains many of our weird symptoms.
And indeed abstracting them for us. Our senses such as sight and hearing abstract away any direct awareness of the low level data acquisition, signal processing, and data interpretation that is going on; just a highly abstracted rendering of it that allows our brains to best make use of. Language also is pretty astonishing.
I think I can get some idea of what you are experiencing, having had intangible experiences of this sort myself, if not quite this. I don't think there is a logical inconsistency. Sensations that seem to be of a certain type, devoid of any specifics to make them a case that type are not that uncommon, both in illness and health. Just as an example argued about in philosophy of mind and perception. Philosophers argue that to see movement we must be able to see what moves. More specifically we must be able to resolve our visual image down to at least the distance moved. In other words if we cannot resolve images down to five seconds of arc we cannot detect a movement of two seconds of arc. This is quite wrong and it is easy to see why. All we need to detect movement is two sensors A and B and have A on and B off, then A off and B on - which we see as movement from A to B. But to resolve objects we need more sensors. To know how big something is we need at least sensors A,B,C and D such that B and C are on but not A and D. To see a BC sized object moving we need to have A and B on, then B and C, then C and D. Zecki's work on vision shows that everything we see is reconstructed from judgments. All experience is after the logical inferences in the early pathways. I don't see any reason why the brain should not infer the presence of pain without being able to identify any specifics. Perhaps the closest I have been to this sort of paradox is when waking from anaesthesia, and sometimes just waking from sleep, when I am convinced of some state of affairs of the world around me yet have no idea what the state of affairs I am convinced of is. In patches of relative lucidity the absurdity becomes clear but the thought then reasserts itself.
How does the pain compare to 'ghost pain' from an amputation of a limb? They used to think that ghost pain was psychological, but later discovered that the 'pain' originates from the spinal cord/brain. Had a patient were I worked years ago who had his little toe amputated in a Russian prison, but still felt pain in his toe that was no longer there.
Could it be that our sense of pain is actually a composite of two or more sensations? The sense of feel/touch, possibly intense, combined with a sense of discomfort/distress that our brain 'attaches' to the sense of intense feel/touch, the combination being what we know as pain? And then maybe in some rare cases we might get the discomfort/distress sensation even without the intense sense of feel/touch? Just a wild guess, long shot.
I think this impression of unfelt pain might arise from feeling a subtle sensation that accompanies felt pain. So in a way, it reminds me of feeling pain except that that there is no particular pain.
I think it is simpler than that. When we experience pain the signal is sensed by a part of the brain which is like the 999 operator who gets the information then alerts the ambulance service and the police. If the message to one is blocked somehow the message to the other still gets through. My body reacts to the pain as it should while my conscious mind is oblivious. Usually we think we are in control of how our body reacts to painful stimulus but most of it is done at a lower level of consciousness.
