Towards the end of 2001 Vera rang me, wanting my help with her health problems and the distress they cause. She had obtained my contact details from the Contacts Register of AvMA, which at that time was known as Action for Victims of Medical Accidents. Vera finds her GP unhelpful and patronising and feels misunderstood and misjudged. We talked for some time and I tried to help her with suggestions.
Vera’s difficulties began because of negligent/incompetent treatment by a dentist. She was left with a very damaged and painful mouth and consequently she has physical difficulties in speaking clearly and being understood. Because of this I later thought that a letter about her health problems would be helpful for her to show/send to people and I sent her several copies of the letter I composed for her.
[Vera is not her real name, and Elaine is not the real name of her daughter.]
I later updated the letter a bit and here is the updated letter which I sent to Vera at the end of 2001, with copies for her children:
I thought it might be helpful if I wrote to you with a few ideas about how to get feeling better, because as you are tired and weak and in pain it may be hard for you remember all that I said.
I am a former elected Vice-President of the College of Health and for over 12 years, on my own, I have been providing, in my area, a free help-line for people in pain and people damaged by doctors and dentists. I am listed in the city’s ‘Help Yourself’ book, which is compiled and published by the city libraries. There are copies of it in branch libraries and GPs’ waiting rooms and hospital waiting rooms. I call my help-line PAUS (Patients Against Unnecessary Suffering). I have helped hundreds of people.
Obviously I cannot cure you. But I am sure that if you follow my advice you will feel a bit better.
You have been in pain for such a long time that the pain is now only a part of the problem. There are many other problems that have developed as a result of the pain.
Constant pain is very tiring; it takes away your energy and it disturbs your sleep. It makes you less able to take proper care of yourself. It naturally dominates your thoughts and you give less attention to your eating. The tiredness makes it harder for you to think of suitable meals and harder for you to prepare them, and the tiredness and pain in your mouth make eating a difficult very painful procedure. So for all these reasons, you tend to eat insufficient food and you tend to rely on bread and butter to a large extent. This is not a good idea and it results in an increase in the pain.
Here are some of the reasons:-
Insufficient food causes you to have even less energy and this leads to you bothering even less about proper meals and so you are on a downward spiral of less and less energy and less and less suitable food.
Eating mainly bread and butter means you are getting insufficient protein and this is one of the reasons for skin getting thinner and more sensitive, and for muscles losing their strength and you getting weaker. It also means that you are eating salt (because of the salt the manufacturers add to bread and to butter) and this is bad for your heart and your blood pressure and many other systems in your body.
You need to eat foods containing some iron or you become anaemic. You have been avoiding meat because you find it painful to chew. Red meat is a very good source of iron. I’m pretty certain that you are anaemic from a long-standing shortage of iron in your diet. Anaemia makes you more tired and more weak. It also makes it harder for you to think as clearly as you need to.
Most old people do not have enough calcium in their diet and I think this has been the case with you. This is particularly so because people in pain need more calcium than people who are not in pain. Calcium helps us to relax. As a person in constant pain, you need all the help you can get to relax! Pain makes you tense. Calcium is also helpful when you are wanting to go to sleep. I have advised you to drink more milk, especially if you are feeling particularly tense, and especially in the evening to help you to get some sleep when you go to bed. Getting some sleep helps you cope with the difficulties and pain of the day ahead. If you get up from a night of no sleep you are beaten before you start.
The tiredness, the anaemia, the pain and insufficient food lead to insufficient exercise. This inactivity, and the salt, and the shortage of calcium all lead to some demineralisation of your bones, especially, perhaps, of the wrist bones and the spine. This makes it more possible for a fall to result in a fracture. So if you drink a pint of full cream milk a day (my personal opinion is that full cream milk is better for you than skimmed milk because it tastes nicer and it is more soothing) and try to to be a little more active, this will help to protect you from further unnecessary bone weakening. A very simple exercise that is good for wrist bones is to squeeze a rubber ball several times a day. If you haven’t a rubber ball I’m sure you can find something similar and softish to squeeze in this way.
Amitriptyline is sometimes prescribed for mouth pain and it has occasionally been found to be helpful (but not to anyone I’ve ever encountered!) but if it hasn’t helped after three weeks then it isn’t going to help - and you’ve been taking it for more than three weeks. It does help a bit with the sleep problem but it does so much harm in so many other ways that I am certain you will be better without it. It causes some sodium and water retention, which you know as oedema. (And water retention in the blood stream causes extra strain on the heart so it becomes enlarged and this causes breathlessness, and you have told me you have an enlarged heart and breathing difficulties.) The drug also causes constipation. And it slows you down a bit, especially your thinking processes. There are many, many bad results from taking this drug. In my opinion, it is best regarded as a cheap and nasty poison which doctors would never dream of taking themselves. In my experience, they usually prescribe it to people they want to label as ‘just a depressive’ rather ‘an equal human being’. The very top man in the whole world on the subject of pain was Professor Patrick Wall of University College, London. He died a few months ago. In a personal letter to me in the 80s, he wrote that it wasn’t worth trying this drug for more than a short time. He wrote that the trouble is that most doctors and dentists are simple-minded (his exact words). His opinion was that they tend to want and look for simple explanations for pain and so they decide to call it a psychological problem and to prescribe drugs like Amitriptyline, which have an effect on the brain, rather than understanding that pain is entirely physical and is also very, very complex. He said that pain is the most complex matter he had ever studied. Unfortunately very little time is spent learning about pain in medical training, and the little that medical students do learn about pain tends to be about acute pain, which is quite different from chronic (i.e. long-standing) pain. He also said that doctors don’t read enough. I haven’t met even one who is familiar with Wall’s research findings.
Wall says that the most important thing for people in pain is to be BELIEVED. I agree with him. Pain is hard enough to cope with, without the additional problem of people assuming that you are imagining it or exaggerating or that it is psychological or any of those pejorative judgements.
But equally important in my opinion is concentrating on good nutrition – like high quality protein, like the recommended 5 portions of fruit and vegetables a day, like at least a pint of milk a day, and avoiding salt as if it is poison.
You also need to be able to talk about your problems. Elaine sounds very nice and she realises the importance of good food and we agree that lamb’s liver and tinned tomatoes would do you good and not be too difficult for you to eat. Eggs are also good for you (preferably not more than 4 a week) and are also easy to get hold of and easy to cook. As I have said, you are welcome to ring me any time. I’ve found your phone number now – in the AVMA stuff – so if you ever ring when I am out, leave some sort of message on my answer-phone and I’ll call you back.
Doctors don’t allow themselves to think about the practicalities of your situation. If they did, they would be able to deduce, as I have done, that you are suffering from:-
Severe and constant pain both in the mouth and elsewhere
Anaemia from shortage of iron and shortage of vitamin B12
Breathing problems, ……and many more!
All of these problems are physical. They have all taken a long time to get as bad as they are. They are complicated and interrelated. Anything at all that helps one of them will, hopefully, help something else as well. There’s nothing like a bit of help, a bit of improvement.
Concentrate at the moment on food. Look on eating proper meals as the most important activity of your day. Think of it as your job. Even if you do nothing else, you must do that. Your body and your brain cannot serve you well if they have insufficient nourishment.
I think you would also find it helpful to get some multivitamin/multimineral tablets from Boots or Holland and Barrett or somewhere like that and to take whatever dose is recommended on the pack (do not take more than the recommended dose). They just have a bit of all the vitamins and all the minerals in them and it helps to prevent you from being short of any particular nutrient. Always take tablets with a good draught of water. Your appetite should improve as your nutrition improves.
I hope you will let me know how you get on.
[Vera found my suggestions helpful, especially improving her nutrition and cutting down on salt. She continued to ring me for further help and encouragement for some years.]
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