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- Type of diabetes
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A letter from my friend to a well known medical journal
Living with autonomic neuropathy
25 November 2005
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
xxxxxx xxxxx
No longer with us God Bless........
Living with autonomic neuropathy
25 November 2005
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
xxxxxx xxxxx
No longer with us God Bless........
