Pain.

[Fuzzyhead]

This back ache is getting worse, it started in one place on my left 5 months ago and was more an annoyance than painful, it hurt if i slouched forward and sometimes at the end of my breath. It's now also hurting everyday in my left arm at the top if i lift it and now my left ear, teeth and left side of my head are paining too. If i twist my torso it's really painful all down my left and across my left ribs. Even if i am sitting now all my left aches off all day.It's wearing me out and getting me down now, i woke up this morning shattered and waves of adrenaline every few minutes which i know is anxiety but i am really anxious because of this constant pain and worrying it's my lung/heart etc. If i lay on the floor on my back it hurts on the left of my middle/upper back in the place that hurts when i breath or slouch over.

 

[Mohawk1995]

By all means get those big issues (lung, heart, kidney, stomach, bone, etc...) checked out first. It could also be an "over-responsive" reaction, kind of like a migraine but in your trunk, jaw and along your spine. That could explain the widespread features including the uncommon pain pattern of being so much of your left side. You could have a less severe, back issue and/or a TMJ issue, but instead of it being localized pain, the response has caused it to be amplified and more widespread. Kind of like turning the gain up on a microphone so that when you speak into it, the sound that comes out of the system sounds like a bomb went off.

Definitely get the big stuff checked out, but if it is an over-responsive reaction it can snow ball with anxiety, sleep disturbance and lack of activity.

Over-reponsive = input (minor or normal) being processed by the nervous system which "incorrectly" identifies it as a major threat that then responds as if it were so (high levels and widespread pain). Don't ignore the symptoms either but just know this can happen.

 

[Fuzzyhead]

I have had my lungs listened to and tapped, oxygen levels checked, heart listened to and an ecg, bloods done, kidneys and bladder scanned and all ok.

 

[Valentijn]

Definitely get the big stuff checked out, but if it is an over-responsive reaction it can snow ball with anxiety, sleep disturbance and lack of activity.

This sounds like more psychobabble bullshit

 

[Mohawk1995]

There is a vast majority of processes in the human body (and life itself for that matter) that we do not have control over including somewhere near 90% of our nervous system. Our only responsibility then is to control that for which we can.

 

[Valentijn]

There is a vast majority of processes in the human body (and life itself for that matter) that we do not have control over including somewhere near 90% of our nervous system.

So? That doesn't even remotely support the suggestion that symptoms are due to cognitive and behavioral factors.

Our only responsibility then is to control that for which we can.

Stop thinking about the symptoms in the hope that they'll go away? That's been such a resounding success for ME/CFS and pretty much everything else it's been applied to

 

[Mohawk1995]

So? That doesn't even remotely support the suggestion that symptoms are due to cognitive and behavioral factors.

Exactly. That is what I have been saying all along! Unfortunately some "village idiots" took the concept of "Central Sensitization" to mean we can actually consciously control it (the 90% of our nervous system that is autonomic/non-conscious/subconscious). This when the term was originally defined as an autonomic or reflexive response. These others have hi-jacked it to mean something entirely different and although they might have fancy degrees and titles, they have no true concept of how it is likely impacting a person's life.

We are more on the same team than you think. The Responsibility quote truly means only for things we really can control in general. I was not being specific to ME/CFS.

 

[Valentijn]

These others have hi-jacked it to mean something entirely different and although they might have fancy degrees and titles, they have no true concept of how it is likely impacting a person's life.

Still not sure how that substantially differs from your claim that:

... it can snow ball with anxiety, sleep disturbance and lack of activity.

Combined with the general lack of support for central sensitization theories, you're really grasping at straws.

 

[Comet]

This back ache is getting worse, it started in one place on my left 5 months ago and was more an annoyance than painful, it hurt if i slouched forward and sometimes at the end of my breath. It's now also hurting everyday in my left arm at the top if i lift it and now my left ear, teeth and left side of my head are paining too. If i twist my torso it's really painful all down my left and across my left ribs. Even if i am sitting now all my left aches off all day.It's wearing me out and getting me down now, i woke up this morning shattered and waves of adrenaline every few minutes which i know is anxiety but i am really anxious because of this constant pain and worrying it's my lung/heart etc. If i lay on the floor on my back it hurts on the left of my middle/upper back in the place that hurts when i breath or slouch over.

I'm so sorry you are in so much pain. I wish I could help. Are you able to get help with pain management from a doctor?

 

[Dainty]

This back ache is getting worse, it started in one place on my left 5 months ago and was more an annoyance than painful, it hurt if i slouched forward and sometimes at the end of my breath. It's now also hurting everyday in my left arm at the top if i lift it and now my left ear, teeth and left side of my head are paining too. If i twist my torso it's really painful all down my left and across my left ribs. Even if i am sitting now all my left aches off all day.It's wearing me out and getting me down now, i woke up this morning shattered and waves of adrenaline every few minutes which i know is anxiety but i am really anxious because of this constant pain and worrying it's my lung/heart etc. If i lay on the floor on my back it hurts on the left of my middle/upper back in the place that hurts when i breath or slouch over.

This sounds structural to me.

I have a re-occurring strain pattern when stressed where a rib in my back gets slightly dislocated. This gets worse and worse until I cannot slouch forward at all. If i don't get it treated, it escalates so that even when I'm not moving it's in agony. I saw a chiropractor for it who could do absolutely nothing. Was never even able to figure out what was going on there. Massage therapists (several) have never been able to relax that area of my back. The only thing that helped me is cranial osteopathy (NOT craniosacral therapy) and the relief was both immediate, and lasting. Now, it only rarely happens once every couple years, during extreme stress, instead of every other month or so.

The things about structural stuff is it starts to pull everything in the body out of whack. That's why they tend to refer to a "strain pattern", because if one part of your body is strained by an inappropriate amount or direction of tension, then the surrounding parts will also be pulled differently, and then the parts connected to THOSE will be pulled differently, and so on and so forth. It tends to have a ripple effect throughout the entire body.

This is one reason it's important to see someone who's skilled at recognizing the pattern so they can pinpoint the source of things. For example, my osteo talk about how it's very common to get new patients with neck problems, who have been going to chiropractors for years who work on their necks and experience little to no relief. He traces the issue to their lower back, works there, and gives them some simple exercises to do. They complain "You didn't even touch my neck! You didn't help me at all!" he says "do those exercises and call me in two weeks." Two weeks later all symptoms have resolved, no need to come back. Because, you see, the origin of the issue was not in the neck at all.

So when you go to anyone who does a structural work, their level of expertise and extensive knowledge of anatomy and how different strains affect other parts of the body is essential for getting to the root of the issue.

I used to be in pain 24/7. And let me tell you, I have never experienced a pain that my cranial osteopath cannot feel the structural factor causing the pain, explain to me what's contributing to the problem, and immediately provide some measure of relief for it. With the problems you're experiencing, I'd expect you would know during the very first appointment whether it's helping you.

If interested, here's where you can find more info on the modality, and here's a good starting point to find a practitioner. I'd recommend only going with one who practices it on 100% of their patients. I genuinely think it'd be the direction most likely to help you. Good luck!

 

[Mohawk1995]

Combined with the general lack of support for central sensitization theories, you're really grasping at straws.

We can argue about scientific theories all day and night. But I don't really want to. You will think what you think. I will what I will. If you have no trust in Empirical Science, then I will not be able to persuade you of what I have seen in the thousands of patients with pain I have treated over the past 30 years. They all had pain of differing types and in varying parts of their bodies. I know what I have seen and the patterns of pain "behavior" that consistently speak to either peripheral neuro-physiological factors and/or central factors at play.

Pain is processed and expressed in the brain (central centers) of the nervous system. Otherwise complete Spinal Cord injury patients could feel pain in their feet and amputees would not have phantom limb pain.

Because of this central processing and expression, any factor impacting the function of the brain has the possibility of influencing the type and level of pain the person "feels". Most likely to be at the non-conscious level, but how we think can change physiology. I am not saying our thinking is the cause nor am I saying it is even the major factor in healing. I am saying that it can have an influence however. I also know that no matter of will power, positive thinking or pushing through the fatigue will help heal any ME/CFS patient. It did not do so in my son's case I know.

 

[Valentijn]

I will what I will. If you have no trust in Empirical Science, then I will not be able to persuade you of what I have seen in the thousands of patients with pain I have treated over the past 30 years.

If you think your anecdotal observations, do feel free to publish. But your observations, even if accurate, say nothing about central sensitization or anything else regarding causation.

Otherwise complete Spinal Cord injury patients could feel pain in their feet and amputees would not have phantom limb pain.

You're fixated on a favored explanation and ignoring more plausible ones. Such as there being damage on the nerve itself. The brain does not need to imagine the pain.

Most likely to be at the non-conscious level, but how we think can change physiology.

There's no evidence of either assertion.

 

[Dainty]

@Mohawk1995 you've come in here spouting theories without offering suggestions that have any practical help to @Fuzzyhead. If you were to have suggested some method that you think might help, regardless of the reason it helps, it would probably be much better received. Something along the lines of "Well I know this sound like psychobabble but I've seen X method genuinely work for a lot of different kinds of pain in a lot of people." And then just leave it at that. What you've given us here is a theory that the OP's subconscious is causing the pain, without any recommendation for what steps they might be able to take to relieve the pain.

I know a few meditation techniques that have helped immensely with pain - pain caused by structural and nerve issues that needed treatment. Did they make it go away entirely? No. Did they fix what was wrong? No. But they did make it easier to cope before I found treatment, and provided a good fallback option when treatment wasn't immediately available. I have shared those techniques around PR in the spirit of "hey I know this sounds like woo woo but it helped me" and no one has had a problem with it. You know why? Because many here - myself included back when I was severe - are DESPERATE for anything that might help and are happy to find out something works for someone, even if it's weird stuff.

But come in here victim-blaming by saying "it's your subconscious!" without even referencing what tools you think might help? Nope. Not cool.

 

[Mohawk1995]

But come in here victim-blaming by saying "it's your subconscious!" without even referencing what tools you think might help? Nope. Not cool.

@Dainty I have no intention of saying that the pain that you or anyone else feels is caused by the sub-conscious mind or can be cured by it either. I am not blaming the victims of ME/CFS or I would have to point my finger directly at my son who I personally know was victimized by this disease. He did not choose to have it, he did not have any prior mental health issues and he was not able to overcome it with sheer will, pushing himself more or "thinking more correctly".

At the root of the misconceptions of what I am proposing is the notion that the Brain is primarily consciously controlled or that the "sub-conscious" is really just the conscious mind thinly veiled. My contention and that of many neuroscientists is that the brain is primarily (90%) controlled by what I will term the "Non-conscious". To me sub-conscious means "below the conscious" mind so it is also not directly controlled by the conscious mind (so read non-conscious).

So it really comes down to whether one thinks that anyone can control what is going on in 90% of their brain (nervous system) or not. Applying the notion that a brain/nervous system nearly completely dominated by non-conscious functions can become more sensitive to input, naturally means that it is beyond that person (or any person for that matter) to control. The power that this non-conscious process exerts on the nervous system and the body is enormous and in my way of thinking completely explains why CBT, GET, PACE programs and the like are unsuccessful and are even more likely to be unsuccessful the more power and control it exerts on the body.

My thought is the lack of respect for the power of this non-conscious response/activation process is why Wessely and his cohorts have failed to help ME/CFS patients. In my line of thinking it is this powerful response/activation which initiates and maintains the cascade of metabolic, bio-chemical, immune, hormone, inflammatory, fatigue and pain related issues seen in ME. All of which have my heart break for those who are victims of this process.

I can definitely provide what is now emerging as the current state of the art in pain treatment: virtual reality, graded motor imagery (not Graded Exercise Therapy), Therapeutic Neuroscience Education, Scrambler/Calmare and PoNs Device (the last two not as substantiated by evidence but showing promise). These are not my opinions. These are from the real pain experts and are much smarter than I.

In addition, the most effective other pain treatments are too difficult for most with ME/CFS to gain benefit from because the nature of the disease does not allow them to (not because they would not want to). These include cardiovascular/aerobic exercise, productive/restful sleep and minimizing negative stressors. That is why pain in ME is so difficult to treat as you well know (because they can't work for those with ME)

I know that many have suffered at the hands of those who have pushed an agenda that a few on PR have associated with me. I can assure you I have no contact with them, do not support them and have no intention of ever saying that CBT, GET and PACE will ever help treat someone with ME/CFS.

My thoughts on Pain come from years of reading volumes of research, attending educational training sessions, collaborating with other professionals and treating (successfully for the most part) patients in pain with a very compassionate and encouraging manner. The reason why I unknowingly stepped into the Sensitization debacle in the manner I did was out of ignorance as to what has been done in taking a concept I have found to be very helpful in treating pain and applying it in very inappropriate ways to ME/CFS patients.

Please forgive me for my ignorance and lack of awareness in that regard. To everyone with ME that has been inappropriately treated with CBT/GET and then blamed for it not working, that is scandalous and quite possibly the worst medicine I have heard of in modern times. You may not believe it, but I am on your side. Really.

Sorry for the length of the response. I just felt the need to explain my thoughts in detail in hopes that they help you and others better understand my (differing) viewpoint.