Posted March 4th, 2012; Last Updated: October 14th, 2014
Historically, a condition known as neurathesia in the nineteenth century. Suddenly people would find that they could no longer function owing to a list of weird symptoms…fatigue, strange pains, dizziness, passing out and so on. Doctors of the time understood them as being a result of a ‘weak nervous system’. Patients were confined to bed. It was mysterious, but nonetheless the condition was taken seriously.
Neurathesia then, known as dysautonomia now.
‘Dys’ meaning abnormal. Appropriate, as the condition is a result of a dysfunctional autonomic nervous system (ANS).
The ANS is in charge of any process in the body which is automatic. All the ones we just don’t have to think about because they happen by themselves. Heart-rate, pupil dilation, gastrointestinal processes, constriction of blood vessels to keep blood getting to the heart, to name a mere few.
These days, not many doctors are very aware of this condition. Or how it presents, what other things can go awry, or what kind of referrals are required from them for their patients to get a diagnosis and, as much as is possible, treatment.
Symptoms can come on very slowly over a period of time, or very suddenly.
Medical investigation into symptoms can show that the affected body-parts appear to be fine. The patients can even look fine when they are experiencing the symptoms. Even standard blood tests can return unremarkable results. This, along with a presentation of symptoms such as tiredness and just generally not feeling very well, often results in medical staff misinterpreting patients as being anxious, depressed, stressed or even, if female, ‘hormonal’. But dysautonomia conditions are very real. The problems, however, are not intrinsic to the body parts being tested, but to the faulty signals to the brain about those body parts, which is why it is so often missed.
The ANS is a handy biological system that controls the automatic processes in our bodies. It is wired up through the whole body and it sends information about what’s going on in our bodies to the lower brain (limbic system), and brainstem, so that the brain can order an appropriate response.
So if the ANS says we’re too hot, the brain tells the body to sweat; if the ANS says we have an injury, the brain tells the body to inflame the area to protect it while it heals; and so on.
Of course, if the ANS becomes faulty, then some of the information it sends to the brain is incorrect, which then results in inappropriate internal responses. And that is what causes us difficulty living with the condition – our bodies are reacting wrongly.
Some patients have dysautonomia as their primary disorder.
Various types of primary dysautonomia have been pinned down with a list of symptoms and a name of their own. These names include:
Postural Orthostatic Tachycardia Syndrome (POTS) also known as Orthostatic Intolerance (OI)
Neurocardiogenic Syncope (NCS) also known as Vasovagal Syncope, (syncope is pronounced sin-cuh-pee, just thought I’d mention it as I got a funny look from a doctor for mispronouncing it the first time!)
Pure Autonomic Failure (PAF)
Multiple Systems Atrophy (MSA)
Familial Dysautonomia (FD)
Chronic Fatigue Syndrome (CFS) and
Inappropriate Sinus Tachycardia (IST)
….as examples of the most common ones.
But other patients have dysautonomia as a secondary part of another pre-exisiting condition.
And the secondary dysautonomia can eventually become the dominant problem. For example, those with diabetes or fibromyalgia can develop autonomic dysfunction or, in my case, the development of the (initially localised but with potential for spread) dysautonomia pain condition CRPS was also the event of my ANS becoming faulty.
2014-10-14 UPDATE: Or perhaps not in my case… I have always been rather hypermobile (not full-on ‘double-jointedness’ as it’s often known, but very flexible) and was recently diagnosed as still being partially hypermobile despite working on my muscle strength over the years to try and reduce the negative impact of the condition. What I didn’t know at the time is that hypermobility also affects the ANS. So for those fellow patients with hypermobility the onset of ANS issues could potentially be related to that. In my case my pre-existing hypermobility was a potential predisposition to developing other autonomic problems such as CRPS. So perhaps CRPS is actually my secondary condition after all. We live and learn eh?!
Autonomic dysregulation in the areas affected by CRPS can also result in other autonomic issues in the same areas. For example, a recent research study has shown that patients with CRPS, particularly those of us whose CRPS started in the lower body, are prone to one of the more impairing symptoms of dysautonomia – fainting and near-fainting. This is as a result of impaired vasoconstriction of the blood vessels which allows pooling of blood, leading to low blood pressure and increased heart-rate, as well as impaired cognition often referred to by patients as ‘brain fog’. Such developments are not definite, but it helps to understand how the condition can sometimes develop apparently unrelated issues that actually relate directly back to having a faulty ANS and also require specialist support.
2014-10-14 UPDATE: As CRPS involves a faulty autonomic nervous system, potential additional autonomic issues are not limited to the CRPS-affected area however. The system itself is faulty and that system is throughout the body so that it can carry messages to the brain. A faulty system means that a trigger event could potentially cause any messages from any aspect of autonomic behaviour to be compromised. (Though please do not worry that this ‘will’ happen, it is one aspect of possibilities in CRPS and the sooner it is addressed the better for long-term functionality regarding the new hiccup).
There is no one symptom or key aspect that results in a diagnosis of dysautonomia. Although the fainting and near-fainting is perhaps the most striking aspect, and is often what pushes us to visit our doctors in the first place. But it is actually the collection of symptoms which highlights the ANS as being at the root of the problem. (I’ll include a list of symptoms lower down, for your reference).
Any automatic processes can become compromised. And there are a lot of automatic processes. Just think of all the things that happen naturally in our bodies without us having to even be aware of it.
So for one patient a faulty ANS could mean respiratory problems, and for another – heart-rate issues, and for another – no proper body temperature regulation, or blood pressure variation (causing lots of near-fainting experiences)….and so on.
However, patients don’t necessarily just have one process which is affected.
In fact they often have a collection of various faulty processes.
Separate processes can become faulty because of separate triggers at separate times. In such cases, they are each as a result of the faulty ANS, but have been triggered independently of each other. For example, I developed a tendency towards low blood sugar within a few years of developing CRPS, and another year or so later I lost my body temperature regulation.
But sometimes one fault can initiate another. For example, respiratory issues can initiate heart-rate and adrenaline problems. As I found out through personal experience 11 years after the initial CRPS-inducing injury.
And because we are all unique…. often our collection of symptoms is, too.
So, dysautonomia is a bit of an ‘umbrella’ heading for many different conditions and faulty processes that all stem from the same underlying problem. Some are grouped under a condition name as being part of a specific type of dysautonomia. Some have not been grouped under any condition name, but are still the result of autonomic dysfunction and just get referred to as dysautonomia, or general dysautonomia. It all gets a bit confusing if you start looking for names for everything. I’ve come across some fellow dysautonomia patients who have fallen between dysautonomia-related diagnoses and have ended up remaining undiagnosed for a time. As we are all so different, it’s just not always that neat and simple, and so misdiagnosis is common.
The bottom line is…..faulty ANS….results in faulty automatic processes.
Those of us with dysautonomia have to pay close attention to what’s going on in our bodies in case something else has started to go wonky. If we get to see a specialist quickly enough there are some processes which we can consciously affect, (like breathing patterns, for example). In these cases we can attempt to retrain the ANS back to a more appropriate default pattern of behaviour. Physiotherapists that specialise in certain areas (such as respiration) can help us with this. But the longer the inappropriate default behaviour has been in existence, the harder it is to change it.
So… time is of the essence.
And if there are any viable physio’ exercises for the wonky process in question, they are really important.
Symptoms of Dysautonomia:
(Patients do not necessarily have all of these, these are as a result of aspects that can go wonky, but often patients do have multiple issues from this list)
- Tachycardia (very fast heart-rate)
- Bradycardia (slow heart-rate)
- Chest pain or discomfort
- Dangerously low blood pressure
- Sudden drops and irregularities in blood pressure (as a result of inappropriate dilation and contraction of blood vessels)
- Blood pooling (on standing up the blood vessels do not constrict as they should, gravity naturally causes the blood to then pool in the legs, reducing returning blood flow to the heart).
- Trouble staying upright (orthostatic intolerance)
- Weakness and excessive fatigue (not the same as depression. Minor activities can lead to extreme exhaustion)
- Fatigue after reading or concentrating
- Heaviness of lower limbs
- Unsteady gait
- Slurred speech (aphasia)
- Cognitive impairment – memory problems
- Cognitive impairment – ‘brain fog’
- Cognitive impairment – comprehension difficulty & confusion (understanding individual words but not making full sense of the overall concepts or context of the words in a sentence)
- Cognitive impairment – concentration, losing focus when conversation takes an unexpected turn
- Cognitive impairment – speech disturbances (inability to finish a sentence, losing train of thought)
- Cognitive impairment – word recall
- Intelligence normal when blood flow is sufficiently normal
- Adrenaline issues with over-activation of ‘fight or flight’ mode
- Fainting (syncope)
- Near-fainting (near-syncope)
- Exercise intolerance and syncope
- Gastrointestinal problems [DINET says these are very common] (including Irritable Bowel Syndrome, constipation, diahorrea, abdominal discomfort)
- Bladder related issues (e.g. overactive, neurogenic – lacking control, different at night)
- Blood sugar issues
- Pupil dilation issues
- Nausea, sometimes vomiting, bloating
- Sleep disturbance
- Needing more sleep to function
- Blurred, tunnelled or dimmed vision
- Migraines and headaches
- Inability to regulate body temperature
- Heat intolerance
- Cold hands and feet
- Decreased sweating
- Increased sweating
- Joint or muscle aches
- Myofascial (muscle) pain
- Nerve pain
- Neuropathic pain (amplified pain signals to the brain)
- Tremulousness (tremors, shaky etc)
- Sexual dysfunction (impotence, loss of libido, dry or retrograde ejaculation)
- Bowel dysfunction (intermittent diarrhoea, night-time diahorrea, rectal incontinence)
- Increased emotions
- Noise sensitivity
- Generally feeling unwell on a daily basis (severity of symptoms can vary day-to-day)
- Temporomandibular joint problems (TMJ), also known as myofacial pain dysfunction, and Costen’s syndrome (can include stiffness, pain, headaches, ear pain, tinnitus, neck pain, bite problems, clicking sounds, restricted jaw motion or locked jaws)
- Panic attacks – induced by faulty ANS responses (including dyspnea – breathlessness, palpitations, chest pains and discomfort, sensation of being choked or smothered, dizzness/vertigo/unsteadyness, paresthesias – abnormal skin sensations e.g. burning/prickling/itching/tingling with no apparent physical cause, hots and cold flashes/sweating/faintness, trembling/shaking, fear of dying/going crazy/uncontrolled behaviour)
Sadly, there is no cure for dysautonomia.
Some faulty processes can have their impact reduced by medication, whereas others cannot. For example, heart-rate variability is a particularly tricky one to medicate for as the med’s can’t be changed as regularly as the heart-rate varies. (Which for some patients is literally moment to moment). Whereas other aspects, such as spasmodic forms of IBS pain, can be rather successfully medicated for.
Patients who have dysautonomia as a secondary part of another condition may be able to experience some reduction of symptoms through treatment of the primary condition. But it depends on the primary condition. For example, my CRPS is not very treatable, other than carefully controlling daily activity to reduce overall pain levels and continuing with breathing exercises.
Similarly, some dysautonomia symptoms can be reduced if they are a result of other treatable dysautonomia symptoms. In my case, as my heart-rate and adrenaline issues were initiated by a faulty breathing pattern, I have been attempting to retrain my ANS to learn a healthier breathing pattern. Doing so could possibly have reduced the extent of the adverse heart-rate and adrenaline effects. It hasn’t worked for me, in fact they’ve actually got worse, which highlights that they have become separate issues in their own right even if they were part of the original triggered whole. It was many months before I got diagnosed and received subsequent treatment, though, so again…time is of the essence.
Hydration is useful with regard to under- and over-sweating, as well as fainting and near-fainting. In fact hydration is very strongly highlighted by the experts with regard to reducing symptom levels. So this is definitely something to remember through each day. Drink plenty of fluids, water especially.
Lying down, and lying down with the legs elevated, are ways to relieve the near-fainting experience. Being horizontal reduces the symptoms while we are lying down, but doesn’t necessarily fix the problem. So when we go to get up again the symptoms are often still lurking. So there are times when we just have to remain horizontal, which promotes some interesting creativity on our part to set up ways in which we can still do things from the horizontal!
Other suggestions to reduce near-fainting include avoiding standing for too long, cooler temperature baths/showers, avoiding hot scenarios (saunas, hot tubs, lying on a hot beach), avoiding alcohol (because it dilates the blood vessels thus diverting blood from the central circulation) and reducing caffeine. Also, don’t change position quickly, don’t skip meals – avoid hunger, avoid stress wherever possible, turn your whole body and not just your head when looking around.
If you do have to stand awhile – shift your weight from one leg to the other, try standing with your legs crossed and thighs pressed together (to try to reduce blood pooling), flex your leg muscles or, better still, walk around a bit while you wait. I used to shift my weight from one foot to the other without actually moving my feet, but my Tai Chi teacher suggested actually stepping side-to-side so that there is more movement and muscle flexing, and I’ve found that to be a better way. (It also is better for controlling my CRPS pain when standing).
There are also compression socks,stockings and tights available which put pressure on the legs when worn, and so help to reduce blood pooling. In my case the autonomic consultant advised me which Clinical Grade of compression I need.
If you feel faint, suggestions include lying down (the only thing that works for me), sitting with your head between your knees (this doesn’t help me at all, but we’re all different so give it a try and see what works for you).
If you have to sit for a long time… you could try squatting, sitting in the knee-chest position, putting your feet up or sitting in a low chair to try to reduce the near-fainting effects of blood pooling, too. Just see what works for you, because you’ll have your own selection of symptoms, so some suggestions may not work for you as they could aggravate another aspect. For example, if you have to sit you could also try leaning forward with your hands on your knees, but I can’t do this as it would set off my whiplash migraines. We’re all different!
Some tools exist to help avoid near-fainting by helping to regulate blood pressure. They include hypnosis, deep breathing, relaxation techniques, acupuncture and biofeedback. The biofeedback refers to patients using monitors to see physiological information that we wouldn’t usually know about, and using the info’ to adjust our ways of working to try to reduce symptoms. (I’m working on the breathing and relaxation techniques, but don’t have personal experience of the others with relation to fainting).
Exercise is really important in reducing near-fainting symptoms, but initially it will have the opposite effect. So you need to start really slowly and carefully and build up activity bit by bit, over time. Many areas in the UK have a G.P. referral scheme that can get you assessment, support and an exercise programme designed specifically for you and your condition. (This helped me enormously with my CRPS pain levels, and I now attend Tai Chi classes, so I highly recommend talking to your doctor about this option).
I was excited to find out that leg strengthening can help to reduce blood pooling as the increased muscle mass also helps to reduce blood pooling. It improves circulation, the amount of blood returning to the heart, and therefore it improves standing ability. Right, that’s a good enough excuse for me to carry on with the Tai Chi, then!
There are even ‘cooling vests’ out there for purchase which apparently can help to reduce overall body temperature.
I was also advised by my cardiologist that slightly increasing the level of daily salt intake can be helpful with regard to the near-fainting as well, and the autonomic consultant actually recommended salt tablets for me after running various tests, but it must be paired with a decent fluid intake and discussed with our doctors before making any significant changes. Our recommended daily allowance (RDA) for sodium is a little higher than that of the non-dysautonomic person, but talk to your doctor about this, as it may need some extra thinking about if you have high blood pressure.
DINET advise that anyone with POTS should avoid:
- Excessive heat
- Holding arms above head (this constricts veins, restricting blood flow to the heart even more)
- Too much travelling
- Climbing stairs
- Standing for long periods of time (moderation is the key)
- Ablations (removal of a body part or the destruction of its function, by surgery, disease, or noxious substance)
- anaesthesia (unless necessary) (there are apparently adrenaline/epinephrine-free anaesthetics, though, I will look into this)
- Bending up and down
- Blowing up balloons
- Certain foods (though what they are I do not yet know, I will research this also)
- Doctors who don’t know much about dysautonomia
- Eating large meals
- Energy drinks
- Giving blood
- Lifting objects
- Certain medications (hence need a knowledgable doc’)
- Over-stimulating environments
As you saw from the list of symptoms, dysautonomia affects the body in such a way that patients don’t just have adverse physical effects, but also direct effects of the faulty ANS on their emotions and cognition, too.
So really, having dysautonomia is about working out which aspects of the condition can be managed. Like lying down to reduce the symptoms of near-fainting, for example. And, as we are all different, this has to be worked out for each individual with their own array of issues. But as life cannot be lived in the same way from the horizontal, it is mostly about what can be worked around, and knowing when to stop trying to fight it and have a rest. Not exactly what we had planned for our futures. But the first thing is to get our heads around the hand we’ve been dealt, and the second step is to find coping mechanisms to help us get through.
From my years with the underlying dysautonomia condition of CRPS I have inadvertently gained plenty of training about living with a chronic and severely restrictive pain condition, and how to keep going despite it. The latest dysautonomia symptoms have rendered me even less useful and even more restricted than before in totally new and unexpected ways. The neurological aspects crept up on me and upset me more than any other. However, I’m too flipping stubborn to give in! And too darn creative to not find things that I can still do despite the dysautonomia!
So yes, I started blogging, I still practice Tai Chi (sometimes in a very wobbly manner), I have learnt that I can still read during my less ‘brain foggy’ moments, and even that I can still study (as long as it’s ‘distance learning’ so I can do it at home, and only whenever my body and brain happen to be up to it)!
I love it when the sun shines, I adore being in the countryside and just listening to the greener world go by. I still love listening to music, although I rarely get to do so these days because the noise and processing is usually too much, and still… nothing beats a nice cup of tea!
Pleasure in the simple things always makes me smile! And I think that is what keeps me going. That, and having some achievable goal to work towards so that I feel like I’m moving forwards with something.
There’s always something good out there to keep me going.
I live with, what I have referred to elsewhere as, the ‘Auto Gnome’, because fighting it is fruitless and unhelpful. I have to find ways around the symptoms during the better phases, to still find ways to be me and to live my life.
It’s all about finding what works for each individual.
But despite the uniqueness of each of us, there is an overall community out there, most easily accessed online. There are several online groups for fellow CRPSers to support and inform each other, there are also dysautonomia groups which are often specific to a kind of primary dysautonomia (like ‘POTS’ for example), as well as quite a few dysautonomia bloggers out there and now (2014-10-14 update..) quite a few CRPS bloggers too.
So, find what works for you, but know that you are not alone. Your fellow CRPS and Dysautonomia patients are out there, and we have a habit of all pulling together when times get particularly rough, x 🙂
Comprehensive Cardiovascular Care Group http://www.cccgroup.info/neurosyn.asp
Dysautonomia Information Network: DINET. Their POTS information video can be accessed via You Tube at http://www.youtube.com/watch?v=8UPMYNkm6Bc&feature=youtube_gdata_player (This is a programme about 45 minutes long and, as many dys’ symptoms overlap the condition types, I would highly recommend giving this a viewing, and maybe even getting your doctors to watch it if they need training).
Fight Dysautonomia.org http://www.fightdysautonomia.org/Default.aspx?tabid=61
Hartee, N. (2009) ‘Temporomandibular Joint Dysfunction and Pain Syndromes’ in patient.co.uk http://www.patient.co.uk/doctor/Temporomandibular-Joint-Dysfunction-and-Pain-Syndromes.htm
The Autonomic Disorders and Mitral Valve Prolapse Centre at mvprolapse.com http://www.mvprolapse.com/symptoms_testing.php
National Dysautonomia Research Foundation (USA) http://www.ndrf.org/
National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm
NCBI Resources http://www.ncbi.nlm.nih.gov/books/NBK400/
Russel, R.O., ‘What is Dysautonomia?’ in mitrvalveprolapse.com http://www.mitralvalveprolapse.com/whatisdysautonomia.html
Schwartzman, R.J., (2012) in ‘Systemic Complications of Complex Regional Pain Syndrome’, Neuroscience and Medicine, Vol. 3, pp. 225-242
Shiel, W.C., ‘Temproromandibular Joint Disorder (TMJ Disorder) in medicinenet.com http://www.medicinenet.com/temporomandibular_joint__disorder/article.htm
Smith, J.A., Karalis, D.G., Rosso, A.L. et al (2011) ‘Syncope in Complex Regional Pain Syndrome’ in Clinical Cardiology, Issue 34, pp 222-225 (http://onlinelibrary.wiley.com/doi/10.1002/clc.20879/pdf)
The Free Dictionary (medical) http://medical-dictionary.thefreedictionary.com/dysautonomia
Zieve, D., & Eltz, D.R. (eds) (2010) ‘Syncope’ in The University of Maryland Medical Centre http://www.umm.edu/altmed/articles/syncope-000059.htm