Agony during sleep, neck/back pain all day and night

[gcoe]

Hi Athon

From what you have described I think it is quite clear that you have developed a chronic pain problem and unfortunately it seems to have taken over your life. Chronic pain is one of those very difficult areas of medicine where we don't have a great understanding of what is going on. However we do know it is the experience of pain that has taken over and that the central nervous system has changed in the way it works. We also know that on the whole the body has repaired itself and is generally not the source on the pain experience even if it takes a role in varying that experience. This can be very baffling for patients as you are constantly being given the message from your brain that you are injured or in the process of suffering tissue injury. However it has more to do with the abnormal activation of the very complex pain perception system in the central nervous system.

I note in your last comment that your doctor has referred you to the spinal clinic but if he/she means sending you to a chronic pain team then that is likely to be a good thing to do. I am not sure exactly what they would offer but it is important to understand that a chronic pain problem is primarily a nervous system problem. (please note this does not mean it is a psychiatric problem but is more of a neurological change) These problems often evolve from what may start off being a relatively simple musculoskeletal disorder but then the problem doesn't resolve then often gets worse, more extensive, more constant and can take on a very distressing quality. Such pain can continue to be modulated by what you do so certain activities will make it worse and certain activities, rest postures etc may relieve it somewhat but never resolve it.

Traditionally the chronic pain patient gets misdiagnosed, often for years and sees an endless supply of physios, chiros, drs, orthopaedic surgeons etc. these never really work and in fact can delay the realisation and accpetance that the pain is not mechanical in nature anymore and can't be fixed by mechanical means. You will find numerous therapists and Drs who are not well trained in chronic pain management who will take your case on board (including on this site) and will valiantly try to help and will no doubt fail. In fact these interventions do more harm than good, at best failing to work and at worst unnecessarily damaging the body as is the case with invasive surgical procedures that are not warranted.

The assessment and management of chronic pain needs to be carried out by an experienced specialist team that includes a pain specialist, physio, occupational therapist, psychologist and may be others. One of the key outcomes is to learn how to manage the pain so that it doesn't manage you. treatments often include effective pain modulation drugs (not analgesics and certainly not opiods), education on how to manage the pain, graded fitness training by the physio to help manage the pain and this can all be helpful. People living with chronic pain can find this approach very helpful but unfortunately can't cure you of the pain and this is one of the more frustrating aspects about chronic pain.

I suggest you have a read about chronic pain then go back to your Dr and have a frank talk about you and your situation. Here are a few sites with some info which may be helpful

American Chronic Pain Association

Chronic Pain Information Page: National Institute of Neurological Disorders and Stroke (NINDS)

Pain: Hope Through Research: National Institute of Neurological Disorders and Stroke (NINDS)

[AThorn]

Thank you very much for the response Gcoe.

Yes, this pain does rule my life and has for a very long time and I will certainly read the information in links you provided, as I do believe it's relevant to most of what I'm going through.

Although, from what you've said, it would seem that all of the things I've described are actually just the results of (or aggravated by) something else, which I didn't even mention at all.


If I feel relaxed and in basically no pain, and move my left hand/arm in a relaxed way to reach for something, there can be a sharp, shooting, instant, pain like nothing else I've described. It's something like directly on my spine on the left side and the pain is just PURE. There's no ache, no strain, no soreness, nothing else at all in this when it happens. Just sparks of pain that jolt me. It only ever happens when all the other pains I go through are at their lowest. At the exact same time these things happen:

- There are a few little crunching sounds
- I sort of feel something moving in there that I don't normally feel
- There are a salvo of pain ZAPs as described above

I can hear it happening (very small sounds - very different from any of the clunking or cracking I've described previously) and it's nothing like any of the other pain I've described.


Does anyone know what that might be, because I think this might be the very root of the whole problem?


(By the by .. the spinal clinic referral is not for pain-management. It's because they thought I may have a facet-joint injury)

[gcoe]

Hi Athon

If I feel relaxed and in basically no pain, and move my left hand/arm in a relaxed way to reach for something, there can be a sharp, shooting, instant, pain like nothing else I've described. It's something like directly on my spine on the left side and the pain is just PURE. There's no ache, no strain, no soreness, nothing else at all in this when it happens. Just sparks of pain that jolt me. It only ever happens when all the other pains I go through are at their lowest. At the exact same time these things happen:

- There are a few little crunching sounds
- I sort of feel something moving in there that I don't normally feel
- There are a salvo of pain ZAPs as described above

Not sure about that. The type of pain you described sounds like nerve pain. For example if there something like a neuroma that can give you an electric shock/jolting like pain. A neuroma is where a nerve has been cut and it grows back into a localised bundled tangle. Alternatively a nerve is getting compressed during the movement. The crunching sounds and feeling something moving may or may not be significant. It could be just to do with the amount of muscle tension on your joints which crunches around when you move or it could be something more than that.

Does anyone know what that might be, because I think this might be the very root of the whole problem?

However the "elephant in the room" is that you have a chronic pain problem and such pain on movement can be explained why what is known as alodynia - that is a sensory stimulus (in this case your reaching movement) which is normally quite pain free is experienced as painful. Alodynia is one of a number of painful phenomena you get with chronic pain. So I am not really so sure about this being the cause of everything.

If you like tell us about how it all started all those years ago.

(By the by .. the spinal clinic referral is not for pain-management. It's because they thought I may have a facet-joint injury)

No you are quite right this is not for pain management and in my opinion it is grasping at straws that a facet joint injury could be causing what you have now.

[AThorn]

Hi again Gcoe, and thank you very much again for your response!

Hi Athon

Not sure about that. The type of pain you described sounds like nerve pain. For example if there something like a neuroma that can give you an electric shock/jolting like pain. A neuroma is where a nerve has been cut and it grows back into a localised bundled tangle.

That sounds familiar, maybe. Sometimes when I've had a sleep with my arm thing on and I have avoided sleeping on that bad side, if I am careful what I do I will be somewhat pain-free in the morning, then it will get to a certain time in the day and I might just be walking or standing somewhere and then I will feel something like .. I don't know how to describe it. Like a worm or something wriggling around in there for two seconds or so? Right near that same spot. If I am having a morning where there's not much pain, then I feel that happen, within ten minutes I'll be aching away and the rest of the day will be very painful for me. The 'worm' part doesn't actually hurt in itself. It's just a squirmy little feeling in there.

what is known as alodynia - that is a sensory stimulus (in this case your reaching movement) which is normally quite pain free is experienced as painful.

I'm sure I probably do experience that as well as part of the bigger picture of suffering from chronic pain, and, I'm no Doctor, but what I'm experiencing with this specific, sharp, sparking pain doesn't sound like it matches up to the Alodynia description. What I'm talking about is a movement that I can't actually replicate except in one circumstance - when that area is extremely relaxed. I can feel different muscles/tendons/whatever is in there kick in. The whole thing is a bit of an alien feeling to my normal movements. It just moves a bit differently and feels different. Normally that area is tense all day, and I simply cannot relax the area enough to duplicate the move. My shoulder must be relaxed to a certain degree, my back, my neck, it all has to relax to a point where I just move without the tension that I normally do, totally forgetting that it's going to crunch me.

Imagine you're going around all the time every day holding your head to the side with a tennis-ball between your cheek and your shoulder, holding it there. Head tilted, shoulder raised, muscles bunched. Then at night you get home and sit down and watch some movie for a couple of hours and the ball falls out without you noticing and your shoulder drops down to it's lowest position and your head moves back upright, or even a little bit toward the other side. You see something on the shelf next to you and go to reach for it just with your arm (no real neck or shoulder movement to go with it) Right then when your arm is almost fully extended. Crunch! It's not the same movement with different results. I'm utilizing different stuff and moving things in there in a different way, activating things that are never normally activated because of the tension that is usually maintained in that area.

In my example you're probably just pulling a muscle of some kind, but this feels and sounds nothing like a pulled muscle.

I wanted to clarify about the volume of that sound, too - I'm not sure if it'd be all that audible to others unless they were right next to my neck. That's the sound I'm referring to. It's not some booming noise going on in case I've given the wrong impression (not that you indicated I had, just trying to be as honest as I can)

Another thing which I'm not sure would have any relevance or not - I noticed around the time that when the pain first started to get to me, if I was under the shower, that if I kept the water beam fairly small and had it pointed directly at the spot where the pain always is, that I could pretty much turn it up to extremely hot temperatures and never feel it. If I moved off that spot it would be stingingly hot, but on that spot I could (and still can) pump the temperature up to pretty much anything and not feel it. It doesn't feel particularly numb to touch the area in a shallow way, but I did intentionally hit it with objects a few times when I was younger out of frustration, and I remember quite clearly that it was fairly numb to any and all blows I delivered, and, as I said, I simply have no temperature sensation in that specific place there at all.

If you like tell us about how it all started all those years ago.

Hundreds of hours in front of a computer screen with no concern for posture, carrying a huge bag for miles stacked with books always on the one shoulder, a fall where a chunk of hay landed on my back (it winded me, but I never felt anything other than what you'd expect and was fine afterwards), my Mother and Grandmother would get aches in that area too, sometimes, but I don't think either of them ever had any real problems with it - at least not like I have.

I think it might have the most to do with sitting in front of a computer for day after day after day, and that heavy bag. Sounds a bit stupid to say it, because then it turns out that it's all been my fault. Normally Doctors jump on the 'hay landing on me' thing, but people remember incidents that hurt them or make them feel or move differently; I don't remember that doing any of that. It knocked the wind out of me, but I never noticed anything lasting out of it.

No you are quite right this is not for pain management and in my opinion it is grasping at straws that a facet joint injury could be causing what you have now.

Well I must say I think you're very right - if you want to know the truth I was pretty disgusted by the way the diagnosis came about. The Doctor didn't even really test me. Laid me face-down, pushed on one spot (and one spot only) not even hard .. he asked 'Does that hurt?' .. it felt nothing like any of the pain I normally experience - it hurt minimally because he was pushing on a soft spot where I think anyone would report discomfort - I said 'err .. a bit', noncommittally. He stopped, and in a friendly manner said 'Get up', I was like 'What?', he said 'Get up, it's okay, I've seen enough' ... I was befuddled. He hadn't done anything. He didn't know anything about my case except the very brief introduction to it I'd given him that day. He booked me to come back in a couple of months time, gave me some injections and took a lot of my money.

I don't mean to speak ill of a Professional in the field - it's not like I'm naming anyone - and I'm not bitter about it, but I really wasn't impressed with that (I still sent in the post-injection results when they were due), just never went back. And, maybe it even is a facet-joint injury, but you'd never ascertain it from an examination like that.

Anyway, there's wall of text and a bit more of my story!

AThorn