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
Very informative and well researched! :o)
Thanks hon’, 🙂
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Love your style! Love your blog! Thank you. I have dysautonomia also , diagnosed 2 yrs ago. now have concerns that it may also be MSA. How would I know? Thanks , Wanda
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There are some natural food supplements that can help improve low blood pressure like Licorice. ^
My web page
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Hi Elle, I too have been diagnosed with crps nearly 4yrs too late but heyho. I adore what you are doing by helping so many of us out there with the information & much needed help & contact lists. I also believe I have dys too but will have to wait for a proper diagnosis but all the symptoms are there 😦 You have inspired me to want to join facebook just so I can talk to you on there & others like us in our condition because I feel very lonely & isolated & in the dark about so much about my condition, I have had to find everything out myself so far on the internet.
Anyhoo keep up the great work & i’ll hopefully be sending you a friend request soon on FB x
Hiya, I’m sooo glad you have a diagnosis now because it helps doctors take us seriously even though we usually have to train them up in the subject first! There’s some links over on my ‘Useful Links’ page which includes some research papers in case there’s anything on there that would be helpful for you to print off for your doctor to read. Be forewarned that quality of health info’ on the internet varies, which is why I list my sources (particularly for CRPS stuff as the knowledge is always growing and changing). There’s some info’ websites also listed on that ‘Useful Links’ page as well, one of which is accessible through Fbk and posts new research. There’s a link to my Fbk blog page on the sidebar of theis blog’s homepage, and there’s various support groups on Fbk too, it’s a case of trying them out and finding the one with the atmosphere and approach best suits and supports you. Thanks ever so much for the positive feedback, it is always much appreciated to know that what I’m trying to do is actually making a bit of a difference, 🙂 xx
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This has been the most helpful information that I have ever read. I am a nurse and can understand healthcare’s complicated language, but, it is much more helpful in having this information presented in a matter-of-fact way that is not so scary. I am so glad that I am not having issues as violent as you do. But, I am very frustrated in fighting on a daily basis, up and down like a yoyo. I am particularly frustrated with weird symptoms that Physicians see as app psycology. I am tired of being a professional person, but the word finding/recall makes me sounds like an idiot. I can’t even come up with simple words like orange, or my husband’s name. I finished one Masters Degress and had to stop with my second masters/Doctorate degress because I have a major exacerbation after a major dose from an epinephrine pin. I would love to finish my education, but the stress kickes everything off and after about a year of school I can’t think or function. Can’t remember anything from all the studing that I have done. Anyway. I guess the bigest frustration is getting anyone to believe me, to find a doc that will work with me in an effective manner. I have the same complaint that I have heard above–I have to train and educate my physians on Sjogrens’ Syndrome and Dysautonomia. There is no one around here, including specialists that know anything about it. I am going to look at the references that you have provided and see if I can get additional information to share with my physicians, and try to figure out which type of Dysautonomia that I have. Maybe that will lead to finding a way to cope with all this weirdness.
Hi Gayle, I’m so glad that this has been useful to you, thanks ever so much for the positive feedback 🙂
The word problems are so annoying eh? Last time I went to the doc’s I took written info’ with me on what I needed to update her on because the appointment before that I couldn’t remember the word for ‘heart’! I find that written info’ is awesome, as long as it’s clear and in easy to read sections/tables/etc (coz then even the doc’s who don’t want to read it quickly see the point 😉 ), and as a nurse you’ll be awesome at knowing what info’ to highlight.
Here’s a link to an older post about what I took to my doc’ (who’s since retired) to show him the severity of the autonomic issues I was trying to talk to him about. Pictures speak louder than words it seems coz it made an instant difference to his understanding and response. What I take with me to my doctors appointments
I always take back-up with me when I see new medical practitioners too. I’ll pick a few info’-filled research papers (as doc’s generally give more weight to research than expert patients) that relate to my conditions in both a broad sense as well as stuff that relates to their specialist area.
One of my friends and fellow bloggers (also an ex-nurse) has written some great stuff about what to put in writing. A couple of her recent posts specifically addressed this and they’re really good so here’s the links if you fancy a read…
1) Documentation – a picture’s worth a thousand words
2) Documentation – Long Time? – Timeline!
Study-wise… how about distance learning? I don’t know which country you’re in but from my UK studies I can highly recommend the Open University from personal experience, plus various ‘bricks and mortar’ uni’s have distance options now too. I can’t do anything full-time anymore and even with my part-time, as-and-when-I’m-able, approach to studying I still lost my higher critical brain functions for a few months, but the contact with and support from the OU helped me battle through the last masters module. And if you’re in the UK, definitely ask about ‘Disabled Students Allowance’ (I wrote a post about that too if you want more info’, x) and remember that we’re at a disadvantage and the DSA is simply to help us try and study a bit more like we would and could have if we were healthy. It meant that I could do my research and dissertation whilst lying on the bed or sofa whilst drinking loads of fluids and I was somewhere safe when my brain and/or body packed in for the day.
Oh and definitely check out DINET’s list of physicians (inc. in what you’ll find on the ‘Useful Links’ page) to give you some idea of where the experts are, and ask a local neuro’ or two if there is anyone with these skills if you need to find someone closer as not every autonomic / neuro’-vasc’ spec’ is on their list.
Congrats with your masters and all that you got through of your second masters so far before you had to take a break. Tipping the hat at you, that’s awesome 😀 Give me a yell if I can be useful in any way, xx
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Sharing this with my Living with RSD facebook group (again). Thank you for all of the good work you do to help inform our community. Spoonie hugs.
Good luck with Verticality today!
I’m so glad that you find this useful, I’m sending Spoonie hugs your way in return 🙂
Today I am partly vertical (sat on the sofa with my legs up), I have decided that this totally counts! X-)
Wow, it’s been a while coming here compared to two years ago when I used to check in and read a lot! I’ve learned from even your simple daily blogs. This Marie is beyond compare I’m psyched that you put it all together!! Awful lot of work for a busy girl like you! I’m proud of you keep it up this is something people can’t find information on
Thanks Marge! 😀
There’s still so much that I intend to write about and to add here, plus there are other things in the pipeline to help to raise awareness and to help fellow patients too. So I’ll definitely keep on writing here, don’t you worry – my heart in in this ❤ xox
Thank you for this article. I’m having my table test next week. I’ve been living with these crazy symptoms, that have gotten worse recently, since I was in my teens. I’m currently 39, healthy & active. The past two weeks have been hell. I’ve lost yet another job for what people think ate illnesses that are in my head. Yesterday after my home workout, I became extremely disoriented & felt like I might pass out or die. I managed to scoot my body horizontally overto reach for mg phone to call 911. My arms both were white & my hands purple. Felt like no blood was getting to them. I was treated poorly by the life squad because I had been drinking an energy & endurance supplement and they felt it was the caffeine in it giving me a anxiety attack. The ER nurse told me to get up & walk to the waiting room when my iv had finished. She was a nasty lady. All my test came back normal, so I guess that & the appearance of my hardly there home workout clothes (I’m also very tattooed) made her like me less. I was humiliated, I never go out in public half dressed. I didn’t even have .y shoes with me. It was an emergency situation, to me anyway. I asked if I could wait till my husband arrived, that he was just 13 minutes out. She firmly told me I could “get up and walk to the waiting room.” I almost fainted in the hall just outside the door & began crying uncontrollably. I’m not a public display of emotion kind of girl. I was so humiliated. Another staff member saw my unsteady gate & yelled at me to be still while she got me a wheelchair. The positive of this is the ER doctor said he believed I had POTS. Well he gave me the long medical name, research gave me the abbreviated form. He acted like it was no big deal & I was ridiculous for coming to his ER. What will happen to me if I do faint one of these days? Will my body start functioning normal when I’m out? It really feels like I’m going to die. I get incapacitated after it happens. This last one was the worst yet, I’m still recovering. Can’t do anything but lay around & search on the web for answers. I’m an optimist, a fighter, have overcome many obstacles in my life. I’ve learned to dance around when I have to stand for long periods of time so I don’t faint. I won’t be stopped, but I need some help. I’m not a person to ask for it, but this is changing that part of me. I feel like if I don’t I may die. I’ve been in the car and blacked out. The life squad again thought it was an anxiety attack. By the time they got to me it was. I didn’t know how I got where I was & was scared to death that it happened while I was behind the wheel. I don’t know much & like I said my table test is next week. I’m pretty sure this is what is happening to me. I wish all of you out there the very best. I plan to make it my mission to raise awareness, why is there so little known about this? I’m in the healthcare field as an LPN. This is the first time I’ve ever heard the term. God bless everyone!
After your tilt table test perhaps they could refer you on to an autonomic (neuro-vascular) specialist who can run far more specific tests. The tilt table test is renowned for both false positives and false negatives and so it’s really helpful to get the extra testing to pinpoint the issue if possible.
I would definitely recommend keeping a diary of symptoms and events though, plus a scale of 1-10 of near syncope to full syncope would really help to point out to the staff what your day-to-day quality of life is like. If they can see that you are compromised as much as you are then they should be more likely to refer you on to a specialist, x
With regards to fears about passing out in tricky circumstances I find that there are certain symptoms which are now my cues to take notice of. I personally feel vague and my facial muscles become a strange combination of both tense and yet drooping, whatever your key symptoms are there should hopefully be some there which can help you to spot the onset much sooner. Doing so at least allows us to find a chair or ask someone get some water or to sit with us etc.
As far as medical training goes it’s the anomaly of being in the wiring in the body rather than in the viscera itself which doesn’t get covered in any detail at all. Standard tests all look at the health of the organs so they all come back fine. It takes a savvy doc’ to wonder if perhaps it’s the wiring, and for many of us it takes many years before anyone even thinks of this so it’s a little known and under-diagnosed condition but one which is not actually that rare in real terms.
You’re not alone hon, there are more like us out here, x I’m glad that you have your LPN experience as you’ll have some good skills for dealing with doctors 😉 You can do this. And if I or anyone else in our informal network of patients can help then just let us know, xx
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I said to my doctor after my thyroid tests came back yet again as being fine, that I had so many of the symptoms of Dysautonomia and checking your list I strongly have at least 22 of the symptoms! – My doctor agreed that I could well have ‘it’, but that even if I did – he would not know how to treat same. So that was the end of that! He was nice and cheery and factual – so I left it at that!
I have tried a gazillion treatments to try to get well over the last 36yrs and spent thousands upon thousands of £’s. I never knew why I found standing so tiring and exercising and got ill constantly from chills.. and sweat buckets when I get hot! I never knew why I seem to have to regulate my body temperature from outside.. I can’t do so inside as it were. I have bowel and blood sugar problems and ‘name recall’ problems etc etc BUT thanks to your blog I have now diagnosed myself and as having Dysautonomia.. the only thing I don’t seem to do is get very faint on standing (although my monitored blood pressure drops) but only when my blood sugar is low! I feel relieved that I DO have an illness with a name and that it is not ‘in my mind’.. or M.E. as I was diagnosed as having. I kinda felt that I was going to have to live with these health challenges as best I can. In the past, I have tried to wiggle and squiggle out of this ill health and to cure same for decades!.. Now I feel at peace in a way 🙂 There is so much in life to be grateful for and to enjoy! Thank you for this most informative and well written and very enlightening (for me) blog.. You are doing a great job and rendering a wonderful service to ‘Auto Gnome’ folks, diagnosed and self-diagnosed like myself! :)))
That’s a wonderful message to receive Lynette, thank you xx
My daughter is 21 she has been living with this since diagnosis age 9
I’m so afraid to let her drive by herself
Do you drive?
Yes I do. I had to change to an automatic as the CRPS in my legs would go nuts over having to depress the clutch to change gears in a manual car. My accelerator leg doesn’t get set off so much as the pressure required is less severe but I have to avoid busy town traffic with lots of stopping and starting because the repetition and lengthened time in that position raises the pain levels. So I have to take into account the act of driving and the impact it will have on my symptoms as part of planning my paced physio activity across the length of the day. I won’t drive if the pain is too high because if there is a chance it could affect my reaction time there’s no point in risking myself or others.
The Dysautonomia symptoms also affect driving viability because of the processing and near-fainting issues in particular and I also prep for driving and plan in advance in a similar way although the symptoms can be set off by all sorts of things I simply can’t control so if it downslides I raincheck my plans. I find I can’t drive anywhere near as far as I used to but enough to get to local physio’ classes, hospital appointments, occasional coffees with friends etc.
The DVLA in the UK have no issues with me having and keeping my driving licence as I know when I am safe to drive or not and make the decision responsibly. So it’s all been founded on developing skills of managing my condition and learning to recognise when I am not safe to drive (so I have to accept when I shouldn’t and I had to learn how to assess my ability even when my processing was being impaired by pain or Dysautonomia).
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