How to live with arthritis

 This tweet led me to dust down two articles I wrote about 15 years ago. The first is a letter to a young boy with childhood arthritis. Hope they help.

Darinstrauss Darinstrauss

by cllrsharonhowar

My 3-yr-old son was diagnosed with Rheumatoid Arthritis. Anybody know someone w/experience in juvenile RH? pls let me know

 

 1994

Dear Ieuan,

You asked me how it all started. I fell over and I did not know why.

Getting out of bed was a painful experience. That was 68 years ago when I was 9. What was then called rheumatism, now arthritis, has been a companion to me ever since.

‘Arthur’s’ at worst has inflicted years of pain. But it has become more bearable each year. Like everything else our bodies and brains gets used to the constant nagging. The best ‘medicine’ I know is work. Any work or activity that occupies our full attention.

My good luck is to have had a very full life with many interests outside of the jobs that I have done. The anxiety of keeping up with tasks, writing to deadlines and organising for meetings are wonderful distractions. They push pain into the background of our minds.

In my my thirties the pain got nasty - especially in my hands. I devised tools to drive the car. Techniques were learnt to avoid using my hands. Doors could be opened by leaning on them with my shoulders. Staplers could be operated by elbows. There were no alternatives to some tasks - including many in my job as a chemist in the steel industry.

Problems were spreading all over my body, feet, knees, hips, hands, arms, shoulders and neck. The prospect of increasing infirmity was a worry.

In 1974 my hands were closing and I could not fully open them. Arthritis nodules appeared on the backs of my hands and elbows. My consultant insisted on injecting steroids into my hands. The pain was excruciating and I bellowed like a stuck pig. Mercifully he did one hand only and asked me to return for the other one to be perforated in six months time. A few months later I could not remember which hand he had treated. There was no noticeable difference.

I declined further injections. The consultant suggested that a ‘wheel chair’ was a real possibility in 'six months time’ if I persisted in refusing steroids. He was, and remains, a convinced believer in the value of modern anti-arthritis treatment. ‘Years ago’ he told me ‘ There were dozens of wheelchairs in the waiting room. Now there are none.’

He may be right. There are many enthusiasts for treatments especially for some of the new drugs that are now available. I have had the good luck to manage without them.

My main problem when I became an MP in 1987 was that my walking gait was irregular. I limped and stumbled. At worst I ricocheted from one side of a corridor to the other. If I had the slightest smell on alcohol on my breath, a fair conclusion was that I was ‘staggering drunk.’ Such reputations are easily gained in Parliament. I announced the real reasons was arthritis. Soon everyone understood why I walked in that funny way.

Probably over-compensating, I had always been hyperactive, with a record-breaking parliamentary workload. Standing at receptions for periods of ten minutes or so was impossible. But receptions can be avoided.

In 13 years I have been absent only two days for sickness - not once because of arthritis. In August the members of my local party in Newport unanimously selected me as their candidate for the next election. It was very kind of them.

I am looking forward to passing the age of 76 working hard as an MP. Arthritis will certainly still be nagging away, but I will among a group of MPs with a special knowledge and sympathy with others whose lives are similarly affected.

You will not grow up to be a David Beckham, but life can still be great.The lesson is that we must strive to make the disease our servant not our master

Good Luck

Paul Flynn

 

 

From the Independent 1995

Two weeks ago, Stewart Andersen wrote of the success of his hip replacement operation and celebrated his relief from pain. Here, the Labour MP for Newport West relates a very different experience.

"For chrissake. Don't do it. We're doctors. We kill people."

It was an extraordinary statement from a Harley Street surgeon as we sipped tea in the House of Commons Strangers cafeteria. He had come along to advise me on hip operations for an adjournment debate I had been granted in June 1993.

He had asked me about my own staggering gait. "That's why it's tea, not drink," I explained. "I don't use the bars here. When my fellow MPs see me ricocheting from wall to wall down the corridors, they know it's not the booze, it's arthritis."

Rheumatoid arthritis has plagued me since childhood, and 14 years ago I was forced to retire as a chemist because my hands were not obeying the messages from my brain.

Selected as candidate in 1986 for the then Tory seat of Newport West, my family cheerfully decided that PPC (Prospective Parliamentary Candidate) in my case meant Poor Pathetic Cripple.

So my interest in the subject was personal as well as professional. I was a few weeks away from a planned hip operation in my local Newport Gwent Hospital, to be followed by a knee replacement six weeks later.

My visitor shook his head sadly. "Can you do your job as an MP adequately?" he asked. Probably over-compensating, I have always been hyperactive, with a record-breaking parliamentary workload. "Then cancel the operation. You're too young at 58." I phoned the hospital and called it off. It was the best decision I ever made.

As a chemist I pride myself on knowing something about medicinal drugs. A good rough guide is that there are two categories: those that have nasty side-effects, and those that have nasty side-effects we have yet to discover. For this reason, for decades my body had been a drug-free zone.

The greatest sickness of our society is our belief that there is a drug for every pain, grief and shock. Our bodies are miraculously resourceful in creating their own painkillers. Very recently, we learnt that the brain creates a chemical identical to the active substance in cannabis. Our random highs of unexpected pleasure are free and legal.

Like millions of others, pain has been my constant companion, sometimes treacherous, sometimes merciful. You can take a painkiller and the pain might last an hour. It can also go away in 60 minutes of its own accord. It is my belief that the relief from pain is more to do with the body's own internal defences than with the external effects of a drug. In addition, pain is subjective and people perceive it in different ways.

For centuries, humankind has withstood the onslaught of pain without drugs or surgery; in recent years, drugs that produced multiple side- effects, such as Opren, have been withdrawn.

Drugs should be our last, not our first, resort. My hero is the man who underwent a vasectomy without anaesthetic, or discomfort. It is not stoicism or courage, simply a technique we can all use by playing mind tricks that deny pain the attention it does not deserve.

In a dentist's chair, I maintain my peace of mind by mentally composing my next speech. When sleep is blocked by pain, always magnified by the small hours, rest comes by imagining I am listening to a speech by John Major.

Later, when I had cancelled my operation, I saw the surgeon again professionally for a formal second NHS opinion. "While we would take every care of you at the operation," he said comfortingly, "there are risks associated with the surgery." There was a danger of a pulmonary embolism and always a chance of infection. He used the word "amateurs" to describe some of the non-specialist surgeons carrying out operations to boost NHS production targets. That might explain the increasing number of operations that have to be redone. As many as one in 10 has to be "revised" or, as he quaintly put it, "the wreckage has to be cleared up".

The object of my debate had been that the NHS has become obsessed with through-put figures at the expense of quality control. There is no way we consumers of hip operations can discover the success record of the surgeon, the infection rate of the operating theatre or the failure rate of the prosthesis. In Sweden, they have a complete record of all the protheses they have ever used. One type was put into 5,000 patients. They all needed revision operations within four years. The Swedes stopped using it.

The same thing might have happened here. There is no way of finding out. There are more than 30 different replacement hips hawked around by profit- greedy companies. One is different from the others because it is blue. The surgeon's personal advice to me was to work out when I planned to die and have a new hip installed 10 years before. He assumed my condition would continue to deteriorate.

For no reason I can fathom. my health has mysteriously and wonderfully improved. I have been almost pain-free for two years. My limp has gone. In the past month I have run for the first time in 15 years.

Like the seasons, the pain and infirmity will certainly return. The experience of a recent writer on this page prompted him to advise readers to seize the chance of a hip replacement operation and, of course, I wish him good health. But my advice is to stop taking the tablets and say no to the men with knives.

 

Comments

[DePuy Pinnacle Lawsuit]

I know exactly you feel. Rheumatoid Arthritis is definitely painful as it stiffness increases starting in the morning.

[Golealafronee]

Не умеет молчать тот, кто не умеет говорить.

[Ellen Vader]

Am touched by your article and like to share the experience of our neighbour in France, a 95 years old opthalmologist. He studied the case of his niece condamned to a wheelchair and found out with the assistance of professor Dr. Jean Seignalet from the Montpellier university that arthritis can be avoided by a dieet without any wheat or corn (except spelt) and no milk products.
He has written a small booklet in French that I can sent if people can read it.
The niece of our neighbour is living normally now avoiding above mentionned products in her food; not easy but she is pain and wheelchair-free.
The theory behind the Seignalet study is that the macromolecules of nowadays wheat/corn and milkproducts are for some people very difficult to digest in the first part of the intestins and then deposited in the articulations leading to arthritis and pain.

Hope it is helpfull to some people

regards
Ellen Vader