Hi,
I have written a short synopsis of my experience with R/A. I know that there are many people that despair when confronted with their initial prognosis but my tale may offer a ray of hope that if there is a will there is a way.

Kind regards,
Dennis.

Living with rheumatoid arthritis

Very few people are fortunate enough to get through this life without a little sorrow or some degree of misfortune and this is a short story of how one day in August 1994, at the age of 46, daily life as I then knew it was to change forever.

It all began with an innocuous pain in the balls of my feet and stiffness in my neck. The pain gradually worsened to the point that I made an appointment with my G.P. to whom I was probably a complete stranger because of my general fitness and good health I had not been to see him in years. As soon as I described to him the location of my aches and pains he knew immediately that these were the classic symptoms of rheumatoid arthritis. (R.A) it was as if he had hit me with a sledge hammer. He may as well have said that I had cancer and 24 hours to live. To say that I was in shock was an understatement. My future was flashing in front of my eyes. A life in a wheel chair, crippled and disfigured, staring at four walls or worse still watching brain-numbing daytime T.V. I would have to quit my job, my wife and children would be homeless because I would be unable to pay the mortgage. I would not be able to send my three daughters to university and on and on. My imagination was running wild. Desperation and despondency descended in equal measures and because I was a trifle insular and introverted, I kept all these concerns to myself. I deliberately did not tell my wife how I felt about the whole bloody mess going on in my head. What was the point of both of us panicking?

I knew nothing then of self-help groups or were to turn to for help or advice and there was certainly no Internet were you could access all the info you needed at the click of a mouse. The computer age was still an infant and the Internet was unknown to me. Besides it would not have mattered much because I didn't have a computer anyway.

I now realize that that when you are first told you have a chronic and lifelong disease and that it will get progressively worse with time and there is no cure, that the psychological effect can be as bad as the illness itself and it is how you cope with it mentally as well as physically will greatly determine the future. In the event I was not offered any counselling by my G.P. Perhaps it was just not available in N.Ireland at that time. So I was left to my own devices. Sink or swim.

All sorts of thoughts were running through my head. My imagination ran amok. How could I be so fit and healthy and yet get such a debilitating disease? Why had it happened to me? I felt a terrible sense of guilt because I had failed as a provider for my wife and children. Was it my lifestyle that had contributed to my condition? But I ate all the proper foods. When I went to the pub on a Saturday night I only had a few pints because I had to be up early on Sunday morning to join the bike club. I was a clocking up 600/700miles a month during the summer and playing handball in the winter months (an Irish game played in an indoor court, similar to racquet ball but without the racquet) at county level. I competed in 24 hour cycle events were you covered up to 250/300 miles practically non-stop. A typical Sunday would have me cycling 80 miles with the club in the morning and then in the afternoon I would drag my wife and kids up mountains and go on long rambles. I was a bundle of energy and also a workaholic. Besides working full time as a factory manager I also had a joinery workshop where I made furniture and kitchens. My worst fear in life was being idle and now I was faced with a future of no work and no play. How idle could you get? Later on I discovered that arthritis ran in our family and my R.A. was most likely genetic. It was almost a relief that the whole scenario was not of my own making.

There was a six month waiting list to see a consultant but the onslaught of arthritis waits for no man not even a Godly consultant. My knees and wrists became swollen like balloons as the R.A began attacking and destroying my joints. My body had gone into self destruct mode. Work was impossible as I was in constant pain and practically immobile. My ability to earn a living had evaporated in a few short weeks.

When I did eventually get to see the consultant I was like the walking wounded. I was immediately put me on a variety of medication and my knees and wrists were drained and injected with steroids. The medication at this initial stage is hit and misses as the consultant tries to find out which combination of drugs is best suited to you. The main reason for this is that patients respond differently to the medication so a formula has to be found that meets your particular needs. Meanwhile the damage being done to your joints goes on unabated during this trial period.

The practice then was to start you on the lower strength medication and if that does not work over a period of time they progress to the next stage and stronger medication until they get your R.A under some sort of control. Now that has changed and the general practice now is to reverse this procedure and administer the higher strength drugs immediately in an attempt to stop the R.A in its tracks because it is in the initial stages that the most damage is done to the affected joints. And so began the countless trips to clinics and hospitals and mind numbing hours spent in waiting rooms watching the clock tick away my life.

To give you some idea of the rapid onset of R.A. in the first month I had a steroid injection to my elbow, a pint of fluid drained from my left knee and my both hands and wrists x-rayed. Sadly this was to set the pattern for years to come with most joints regularly requiring draining /cortisone injections or surgery. Meanwhile my wife was giving me twice weekly injections of steroids for pain relief just to keep me working so my arms began to look like a dartboard. And the problem with that was my wife can't play darts so the needle didn't always end up in the right place. Meanwhile the consultant struggled to find the combination of medication to bring my R.A under control but with little success.

Let me explain what the Day Procedure Unit in the R.V.H was like in the early 90s. The surgical ward where patients received there cortisone injections or had their inflamed joints drained of fluid was similar to a scene from the popular T.V series M.A.S.H. It was located in an old dilapidated Victorian out building which had not changed much since nurse Nightingale roamed the wards. There was loud classical music playing in the background as the Consultant, bedecked in spotted bow tie danced his way from bed to bed talking loudly to his interns in-between humming an aria from La Travita. He was so engrossed in chat with his subordinates that you were never as much as given a second glance as he performed the medical procedure before he danced off merrily to the next patient. When he did eventually retire it was most definitely the end of an era. The mantle was passed over to a young doctor who brought a modern approach to the rheumatology department. The day procedure unit is now housed in a newly built hospital. But I must admit that I did enjoy the music.

Because of my frequent visits to hospital for treatment and the time I had to take off work the company I worked for decided eventually to give me the old heave ho. In a way I suppose they had no choice really. So after 12 years of rising at 6am to cycle 10 miles to work and 10 miles back, summer and winter it was all over. In a way I was not all that sorry because I hated my job anyway.

I would now have to fall back on what was my other part-time job of furniture making. I was now self employed which while not guaranteeing a wage every month at least gave me the freedom to have time off when required for hospital appointments. My wife was also working part time so between us we managed to keep a roof over our heads and pay most of the bills. My furniture making business by its nature was heavy work, lifting and handling large and heavy timber and using industrial saws and wood working machinery. By this stage I had no strength in my hands and my wrists were useless so lifting of any sort was a real pain and dangerous around fast cutting equipment were one slip could mean losing a few digits in a flash. I had a friend who lost most of his right hand in a spindle moulder and he had all his faculties. I had a few near misses due to the inability to grab hold of things and on one occasion was dragged into a planer and lost the top of my finger. It was not the first time that I came home to my wife with a gaping wound and rather and go sit in a hospital waiting room for hours she would stitch it up with needle and thread. She always wanted to work in a hospital so in between giving me steroid injections and doing some handy crochet work to my cuts she had her own hospital at home.

1999 was a particularly bad year with constant visits to the hospital to receive treatment in an attempt to keep well enough to continue to work and as if this was not bad enough I was also getting numerous infections, ear, mouth, scalp, toes but I just accepted this as just part of my overall condition. It was really a low point both physically and mentally. But a chance remark by a nurse in the clinic where I had my blood checked each month changed all that. She mentioned that my R.A medication was to suppress my immune system and therefore I was more susceptible to infections and that personal hygiene was very important especially hand washing. Now this was information that the doctor/consultant failed to tell me and the fact that they were simply content to treat the symptoms infinitum was worrying. Now I don't know if it was because of their heavy workload but I began to look more closely at my medication. Anyway, after the chat with the nurse I bought a gallon of Hibiscrub, similar to the hand wash used by hospital staff and began to use it every day. I have not had an infection since and that is 10 years so now I had only the R.A. to cope with which was enough. If that particular nurse had not given me that simple bit of advice I would still be attending the doctors with infections and getting pumped with antibiotics. Another incident concerning my medication occurred which could have been detrimental to my health. I had decided to change the chemist were I filled my monthly prescription and the newly appointed chemist noticed that I was being proscribed quite a large dose of a certain medication. He queried this and rang my G.P. who admitted the dosage was excessive and he lowered it to a more acceptable level. The moral of these incidents is to take a keen interest in your own well being and that G.Ps are not infallible.

Shall I tell you a similar story? Early in 1992 I was diagnosed with audio sclerosis. A condition that renders you deaf. After numerous tests to confirm my symptoms I was fitted with two N.H.S hearing aids which helped to a degree. They enabled me to hear if I was talking to an individual in a quiet room up close but were useless in a crowded environment because everything became one big noise. So I began to avoid crowded places such as pubs, concerts, theatres etc, anywhere were there were crowds. It affected me deeply as I loved music and the highlight of my summer was to attend an outdoor opera. Now I had to be content with locking myself in my own little studio and turning the volume up full blast and hoping the neighbours didn't complain. I accepted that this was to be my life.

Every year I would attend the local clinic to assess my condition to see if I required a new hearing aid and it was during one such assessment that the audio technician asked had I not considered a stapedectomy. The stapes is one of the three bones in the middle ear. It transmits sound from the incus to the inner ear. In a disease called otosclerosis it becomes fixed and does not transmit sound as it should. A stapedectomy is a procedure which removes a portion of this bone and places a prosthesis to transmit the sound. Now this was the guy who put you in a booth give you a set of head phones rang some bells and recorded your response. I had never considered a stapedectomy because I had never heard of it either from my consultant or G.P. When I enquired about this procedure my G.P. explained that it was a simple operation that replaced the stapes with a metal substitute and required only an overnight stay in hospital. I was subsequently put on the waiting list for the operation.

Six months later. Halleluiah. I could hear again. The hearing aids were confined to the bin. Thanks to a chance remark by a hospital technician I had my hearing restored. Shortly afterwards I went to my first opera in 6 years and I got a seat right up close to the orchestra and the occasion was so moving I almost shed a tear. You can decide on a moral for this story yourself.

In July 1999 I was prescribed methotrexate, a very potent drug with God only knows what side effects and used primarily for the treatment of cancer among other things. If this one did not do the trick then there was no more alternatives. But thankfully it did work and after 5 years of trials and tribulations I was able to get some pain relief and increased mobility. Over that period of time I had to give up a few activities and past times. I could no longer play my guitar, which pleased my wife immensely, because the knuckles on my left hand had developed bony growths and my fingers were all going in different directions. My handball days were over also because by this stage I needed a new right elbow but ironically if I had the replacement joint I would have to quit work because it would not stand up to a great deal of physical use which my job demanded. Needless to say I put the operation on the back burner and suffered on with the old one. 10 years later I am still using it and although the cartilage is completely gone and its bone grating against bone, me and my elbow are coping well. I have no doubt that having a high pain thresh hold has been an advantage. But there was one thing that I was unwilling to give up and that was my cycling. From day one I was determined come hell or high water that one way or another I would get on my bike and I did. There were times I must have looked like someone who had escaped from a hospital ward after a bad car accident with my wrist supports, bandaged knees and neck brace. Needless to say I did not go out with the cycling club but cycled alone along the back roads well out of sight of prying eyes. Again it was the ability to endure a little pain and perhaps this along with the determination not to give up that kept me cycling which prevented my inflamed joints from completely seizing up.

Now at this point I must admit because I was fanatical about being fit to work I put tremendous demands on the N.H.S I could not be idle. I had to have a reason to get up in the morning. I had operations and surgical procedures ad infinitium. I felt that I had to repay the system that had kept me from taking a long walk on a short plank. I can't really remember how it occurred but I answered an ad in the local newspaper asking for volunteers for the N.H.S Patient's complaints panel. I replied and was accepted. The function of the panel was to mediate between the hospital and the patients grievance or as was common their family. During this period I had a brief glimpse into the inner working of the N.H.S. As a rank outsider it was intriguing to be mingling with doctors and consultants and having a say on the panels procedures and decisions perhaps affecting the outcome of what was on the agenda at that particular time. Now I was giving a little back to the system that had helped me through the bad years.

Slowly I came round to the idea of perhaps I should think more about taking more control of my R.A. through diet and exercise and take a more holistic approach to things. I had nothing to lose and things couldn't get much worse. 10 years of accumulated medication was sloshing around in my system. But were to begin. And what better place to start than at the bottom. I decided on the drastic step of attempting to flush all the years of toxins from my body through a course of colonic irrigation and drastic detox. Not recommended for the faint hearted. This procedure, Colon hydrotherapy, or irrigation is a gentle infusion of warm, purified water that helps eliminate mucus, stored waste matter and toxins from the bowel. I wanted to start my new course of action with a clean slate as it were. In retrospect this may have been as much psychological as physical. As unpleasant as it was I had a great feeling that I was ridding my body of years of toxic accumulation. My liver and kidneys had taken a hammering from the side effects of years of pill popping and I was determined to reduce my medication and the first item on the agenda was to quit all steroids and gradually reduce the other numerous medications. I began to check on the Internet regarding medical reviews about which foods would be beneficial to my condition and which to avoid. Exercise was important but that was the easy bit I just increased my cycling miles and I also started doing 30mins of exercise each morning. I began to keep a daily log of my diet, weight and exercise. This way I could look at my chart at the end of each week and high light my progress or lack of. It does require a certain amount of honesty to log all of what you eat and the amount of exercise you do. Obviously junk food went out the window replaced by fruit, fish and vegetables and I scanned food labels for additives and E numbers and avoided them like the plague. I firmly believe the old adage that you are what you eat. If I was to win this battle then I had to make sure I was in the best possible condition.

Porridge, yogurt, red rice extract, foods rich in omega 3 and amino acids, flaxseed, lignans, nuts, pulses all are part of my daily diet. All the info regarding the above can be had on the Internet. Beer was replaced with green tea (almost). Within 6 months I had lost 14lbs. and weighted 10.st. 7lbs. My waist size went from 34ins to 32ins. My energy and endurance levels increased dramatically. I was as fit as I had ever been post R.A and I was gradually cutting back on my medication. I was back to cycling with my club and regularly cycling 300 miles in a weekend. I had gradually weaned myself of my medication until the time came when I was able to quit completely. I must admit it was a little scary. During my holidays this summer I was eaten alive by mosquitoes and had to go to the local chemist for anti-histamine tablets. He asked if I was on any medication and for the first time in 15 years I was able to say no. It felt great. I had finally beaten R.A...

It will take years for my vital organs to return to any form of normality but at least for now I can enjoy swinging from the trees with my grand children and leading a normal active life. The only evidence of my R.A. is when I look at my disfigured joints but other than that it is just one bad memory.

Advice, none because I realize that how you deal with your own problems is unique and that my approach may not be attainable to everyone but if you have faith in your ability to overcome your R.A then you are half way there. I will be 63 this year.

Cheers.

Dennis