How Autonomic Neuropathy Can Negatively Affect The Quality Of Your Life

Today's short post from bmj.com (see link below) is a patient's letter to the British Medical Journal concerning her life with autonomic neuropathy (that form of nerve damage that disrupts all your involuntary functions - breathing, digestion, blood pressure and many more). The value of publishing it is twofold:- a) to promote awareness of this increasingly common form of nerve damage and b) to reassure current patients that what they are feeling, whatever the original cause of their neuropathy, is shared by millions of others. Whether this makes you feel better or not is the question but knowing that your own symptoms are not unique may help you learn to live with them a little better and not feel so isolated. Even doctors sometimes fail to appreciate how difficult autonomic neuropathy can be and because it tends to affect all areas of your life, you need that professional empathy and most importantly, professional treatment. Of all neuropathy patients, the quality of life with autonomic (polyneuropathy) neuropathy can be the lowest and for that reason, patients deserve the best of attention from friends, family and above all, doctors. This letter is very powerful and although your own details may be slightly different, you'll be able to identify with this patient's experiences.

Living with autonomic neuropathy
BMJ 2012


Dear Madam

I am writing this in hope that it may be published in your personal
column where it may be brought to the attention of both diabetologists and
neurologists. I will start by giving a brief description of my medical
history and present condition.

I am now 37 and was diagnosed with type I diabetes 25 years ago. I
was, no doubt, a typical rebellious teenager, and used my diabetes as a
means of losing weight before my eating disorder developed fully. I had
very soon the first signs of neuropathy in my feet and this was rapidly
followed by what was later diagnosed as autonomic neuropathy in my stomach
and bowels. I lost the sense of feeling in my legs below the knees and the
autonomic neuropathy in the gastrointestinal tract worsened. Sweating on
eating certain foods, postural hypotension, lazy bladder syndrome (before
kidney failure) became more serious. I am now very much aware of these
symptoms but when all these things were happening, it really took a long
time for my specialists to recognise them. Ten years ago I developed
retinopathy and lost my sight totally over the relatively short period of
nine months and two years later I went into end stage renal failure.

Having been on haemodialysis for only ten months under the care of
the renal team at St Mary’s in London, I had a double kidney and pancreas
transplant by the renowned surgeon Mr Nady Hakim. Three and a half years
later my kidney failed and I am now back on haemodialysis. After six and a
half years however my pancreas is still functioning. To my surprise, most
of the classic complications of diabetes have improved markedly since my
transplant and I can actually feel my toes although I lost two of them
earlier through infection.

That is my medical history to date and now I would like to tell you
briefly what it is actually like living with autonomic neuropathy.

I still suffer today from sweating when I eat. Even the smell of food
can trigger the sweating. It is usually all over the head, down the neck,
and the front of my chest. It varies with the foods I eat but in an
average meal there will be something that will trigger the sweat glands
and not my salivary glands, which should happen. This is a most unpleasant
feeling. Obviously spicy and hot foods are to be avoided but there are
often hidden triggers in most foods. I did think that after the transplant
this problem would have improved slightly but this has not however been
the case with me. Obviously the problems with the lazy bladder changed
with the advent of dialysis.

My main problem now is therefore my blood pressure. Sitting blood
pressure for me will usually be around 80/50 mmHg. This can quite easily
fall to 60/30 mmHg on standing, which of course means that I faint. In
fact the higher my blood pressure is to begin with the greater the drop
when standing. This can be a daily occurrence and on really bad days it
can happen more than once. Over the last six years I have fractured my
shoulder, elbow, ankle (I was in plaster for five months), my knee and
little finger. This latter is still giving me a lot of pain down that side
of my hand. Now that I am back on dialysis the problem has been
exacerbated and the lowest recording to date was 25/19 mmHg. On this
occasion I was unconscious and indeed after many of my thrice-weekly
dialyses I faint when I come off the machine and usually I have to wait
for up to one hour until my blood pressure rises to 70/40 mmHg before I
can leave the hospital. It really makes life very difficult and
unfortunately leaves me with no other option than to use a wheelchair for
most of the time. Having to use my wheelchair so much is causing problems
with the muscles in both my back and legs.

I feel very strongly about the lack of awareness of autonomic
neuropathy, which can be so debilitating especially for someone who is
blind. I do see a leading consultant in this field at the National
Hospital for Neurology and Neurosurgery although I do not seem to have any
alternative other than to tolerate the situation. I have tried several
medications for this condition without success and the side effects have
been quite serious. At the moment I dread going to dialysis as the feeling
of losing consciousness whilst being dialysed lying down seems to be far
worse than simply fainting. A situation from which I will come round
almost straight away, stay on the ground for a couple of minutes and then
slowly get up. Since I have been hypotensive for many years my body has
adapted to standing with an unusually low blood pressure at which most
people would be unable to stand.

I am wondering if any other specialists have come across such severe
cases of this problem and if so how do they manage it. As I have already
said it is very debilitating and has restricted my lifestyle as an
independent person.

May I also bring to your attention the problems of having autonomic
neuropathy in my entire gastrointestinal tract?

This can start high in my oesophagus after swallowing where certain
foods will not descend by normal peristalsis and after taking a drink the
food is brought back up in a bolus. Going further down the tract food or
liquid will then remain outside the stomach, which leaves me distended
until it eventually enters the stomach where gastroparesis occurs. At
times the food will begin to ferment, which leaves me with sulphur
smelling eructation from the stomach. The usual pattern after this will
lead to either severe constipation or nocturnal diarrhoeal incontinence.

As with the eructation, the wind can also be of an unpleasant odour.
Living with all these eating difficulties has never been easy. I am sure
this has been made worse by my history of an eating disorder; a condition
which is now becoming more common and more often recognised in female
adolescent diabetics. I now eat very little so as to try and avoid the
digestive problems and not to worsen the hypotension.

I would like to think that this letter might be of some use to both
diabetic specialists and neurologists. I have to live with my problems but
this is not made any easier with the demands that dialysis makes on my
fluid restriction and the special renal diet. When all my symptoms first
presented it took a long time for a diagnosis to be made, as there was so
little known and there are still few effective treatments although the
tests to obtain a reliable diagnosis are now effective. Having had
however, many internal investigations of my digestive tract with no
abnormalities other than fermented food, one can at least rule out any
additional issues.

I have learnt to live with these problems but as you can gather it is
neither easy for me nor for those around me due to my constant fainting. I
hope that my letter has made it clear how difficult it is to live with the
complications associated with autonomic neuropathy. I learnt very early
about my diabetes and yes, I did suffer with nearly all the complications
except those associated with the cardiovascular system, despite being a
smoker for several years (I have not smoked for three years) and never
having drunk alcohol.

I shall end this letter here in the hope that at least part of it
will be published so that those concerned with the treatment of diabetes
can have a clearer picture of some of the problems of having to live with
this dreadful condition.

Yours faithfully

Johanna Cheetham

Competing interests:
None declared

https://www.bmj.com/rapid-response/2011/10/31/living-autonomic-neuropathy