POTS (postural orthostatic tachycardia syndrome).

I see the Daily Mail ran a story recently saying that POTS could be the 'cause' for 1 in 3 people with CFS. Having heard the woman who heads the research team at Newcastle university talk a couple of years ago I remember thinking at the time she is never going to work out the neurology of this because she's too narrow in her focus. She spent the first 20 mins of the talk (to University Researchers) justifying that CFS is a real disease and not just malingering (presumably the medics that she normally lectures to have that belief). Then when she got to the heart of her presentation and described how they put people on a 'tilt' table to measure their responses (this apparently is how they diagnose it). sounded barbaric and very unpleasant! However, my main bone of contention and one that has been repeated by the Daily Mail is that this is somehow the 'cause' of CFS when clearly it is just another result of autonomic dysregulation (mediated by the limbic system). A client of mine has pointed me to a training programme called DNRS (Dynamic Neural Retraining System) which she uses - I noted they had an article on POTS too. http://www.dnrsystem.com/POTS.html. They say;

Symptoms can include but are not limited to:

• Increase in heart rate, dizziness, fainting, headache, sweating, shakiness, nausea -  mostly worse with standing
• Poor concentration and memory
• Discoloured hands and feet
• Sense of anxiety
• Chest pains
• Nerve pain
• Hyperacusis (sensitivity to noise)
• Photophobia (pain/relapse on exposure to light)
• Changes in taste and smell

I can remember having most of these symptoms when I was ill 15 years ago - however, no-one seemed to be able to link all of these symptoms - they were all treated separately. The first thing I was given was tablets for the dizziness which made no difference at all. However, had I been diagnosed with CFS or POTS for that matter it wouldn't have helped as it is still a descriptive diagnosis of exclusion (i.e we don't know what it is but it's not something neurological/structural, it's characterised by these things so we'll call it CFS/POTS, etc). So, given a diagnosis like that people are left to manage the symptoms with no idea that the limbic system controls all of these things and that ongoing subconscious stress is triggering the limbic system into sympathetic dominance or vagal freeze. Without understanding what is behind it all people are left powerless and controlled by a medical system that then feeds them expensive drugs and surgery as the answer. It would be quite criminal if it wasn't legal...

Medical contributions to psycho-genic pain

Further to my first blog on reading The Hidden Psychology of Pain by Dr James Alexander, I thought I'd add some more thoughts. I thoroughly agree with his contention that the medical establishment contributes in no small part to the perpetuation of the notion that pain can only have a physical cause. The idea that emotions can cause pain is dismissed in the main, especially since both physician and patient make the mistake of thinking that this means the pain is 'all in the mind' and therefore not real!. Psychogenic pain is completely real - it has a physical manifestation - which can be due to lack of oxygen supply to the tissues or over-contraction (spasm) but the over-riding cause is an emotional memory which has not been released and continues to replay the motor action that was in place at the time that the encoding traumatic event first occurred. So, in simple language the body holds the trauma in memory and, as this is never discharged, chronic pain ensues.. This may take the form of back pain, shoulder pain or in very severe cases, fibromyalgia and other chronic fatigue-related syndromes. There is usually complex childhood trauma at the heart of these syndromes.

The brain is able to create physical symptoms via the combination of limbic system (deep brain) which triggers the Hypothalamus, Pituitary, Adrenal (HPA) axis mediated by the autonomic nervous system; the body is flooded with stress chemicals (mostly cortisol from the adrenal glands) and the stress cycle begins. Cortisol will cause most of the symptoms seen, especially if it is released continuously.

Unfortunately, when a person is misdiagnosed with a physical cause of this (via increasingly sophisticated technological scans which reveal 'pathology' of the various tissues), the belief that there is indeed something physically 'wrong' is corroborated. What you are not told is that many people who are not in pain have the same 'pathology', but since they do not consult their doctors, this is rarely appreciated. However, there are many reliable studies that have confirmed this, it just does not fit the current model. If the pain was caused by the structural abnormalities then why doesn't everyone who has these abnormalities have pain? It just doesn't make sense.

With some chronic pain/fatigue syndromes like CFS/ME the symptoms are so varied that it is hard to see how they relate at all. They can range from cognitive disorders, digestive issues, cold hands and feet, postural hyptension (low blood pressure when standing up), etc, etc. The brain lies at the heart of all of these symptoms via, as we have said, the HPA axis and excess cortisol but for someone suffering it is hard to believe this.

I recently had  a client tell me that she has finally got a diagnosis of Menieres disease, a disorder of the inner ear that affects hearing and balance. It causes sudden attacks of vertigo (a spinning sensation), tinnitus (a loud ringing in the ears), and a temporary loss of hearing. She seemed relieved that at last there is an explanation for the very disabling symptoms she has been experiencing. However, I am not convinced that this 'disease' is not simply another manifestation of the autonomic nervous system imbalance. Sadly, it is hard to contradict the medical view as it is so supported in our culture, and, for someone in pain, they need to have an explanation or they fear that people will think they are making it up or 'swinging the lead' as it used to be called. Being told by a doctor that you have 'x disease' and then, worse, being told it is bad enough to merit investigation, usually by tests (in this case MRI), further traumatises the patient and ensures the symptoms will continue and usually get worse. For traumatisation to occur requires that the person be helpless. There is nothing like being subject to medical investigation with complex interventions by 'experts' to make a person feel helpless. They are totally disempowered from their bodies, their self-determination and become stuck in the anxiety loop.

Unless they are able to work with a trusted holistic/mindbody practitioner who can demonstrate the real meaning of these symptoms and give them tools to alleviate the stress, the likely prognosis is poor. We have seen people die from these chronic fatigue related diseases, and most live a thoroughly reduced quality of life. It takes a lot of courage to break free of the medical model, with its round of tests and specialists who each corroborate the view that this is lifelong and nothing much can be done. And the social care model, that only pays disability payments to those with defined conditions simply adds to the burden that these people feel. If they then get better does that mean they never had it in the first place?? how will they live while they are recovering but are still not well enough to work? This places such a pressure on people that they are unlikely to step outside the system, especially since this means losing the little certainty they had.

It is a very challenging field in which to work. But I have no doubt medical science and psychology will eventually unite and prove that this psycho-genic model is the correct one. We will in the future be able to understand our emotional fallibility without blame - and have a collaborative healthcare team to work with us to re-write the programme and release us from pain.